To contact us Click HERE
False starts:
After 2 false starts I am now on the Rev-lite clinical trial for relapsed myeloma.
False start #1 was a lytic lesion suddenly detected in my right femur requiring hospitalisation for intramedullary reconstruction nailing.
False start #2. 14 days after discharge I could not put any weight on my right leg and it was very painful. An x-ray showed there was now a fracture in the lesion, in hospital for 8 more days.
Clinical trial summary:
My Rev-Lite trial commenced on Wednesday 28th April 2010.
Study title: Phase II trial of low dose Lenalidomide and dexamethasone in relapsed or refractory multiple myeloma (Rev-Lite) in patients at high risk for myelosuppression.
The purpose of the study is to see whether a lower dose of Lenalidomide in combination with dexamethasone is effective in treating multiple myeloma which has not responded or relapsed to prior treatment, while producing fewer side effects in comparison to the higher dose used in previous trials.
Brand name = Revlimid. Generic name =Lenalidomide.
Treatment for first 4 cycles of 28 days is:
Lenalidomide 15mg dose on days 1 to 21, then 7 days free.
Dexamethasone 20mg dose on days 1-4, 9-12, 17-20, and then 8 days free.
Aspirin daily.
After 4 cycles the status of my disease will be reassessed. If my disease has shown improvement or remains stable I will continue on the study. If my disease has become worse my participation in the study will stop.
There are the normal warnings of many side effects.
Funding:
In New Zealand we have a public health service. Unfortunately the funding agency Pharmac does not fund Valcade or Revlimid. They are approved for use in NZ and applications for public funding are in the system. We have to compete for the Pharmac dollar along with all the other cancers and illnesses. If we want it we have to fund it ourselves. Currently 6 months of Revlimid costs about NZ$50,000. The Rev-lite trial is at no cost to me.
Private health insurance for cancers is a recent development in NZ that is gaining popularity though the cost is alarming. Previously we had believed that the health service would be the provider. I did not qualify for the Valcade trial but do for the Rev-lite trial.
My myeloma journey continues.
25 Haziran 2012 Pazartesi
Loss of independence
To contact us Click HERE
When I was in hospital recently for my myeloma lytic lesion right Femur rodding and lytic lesion right femur fracture LINK I was bed ridden.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
I could not use or put weight on my right leg. This left me dependent on help from other people, my independence had gone. My independence stopped at my finger tips.
It became evident what my essentials were: cell phone, radio, diary, pen, lip gel, hand wash, clean underwear and bathroom bag. All were kept in 1 drawer that I could reach or in a plastic container on top of that drawer.
Non essentials were in another drawer and cupboard out of reach to me.
I had to learn to ask for help and press the help buzzer. The nurses were good, as they said their job is to help the patients.
Physio gave me a range of exercises to do in bed several times a day mainly to get the leg working again. Towards the end of the bone fracture stay they encouraged me to get out of bed to use a walker. This was a struggle as I needed increased short term pain relief to cope with the leg bone pain. My pain relief is controlled release oxycontin tablets, 40mg morning, 30mg evening.
When I was discharged from hospital to home I was still in hospital help mode. The occupational health team inspected our home, gave me a wheel chair and a big walker, put in a ramp at the door step, increased the height of my bed and 3 seater with packers, gave me a bath board, shower chair and commode.
Myra had a serious talk to me about self help and that she could not do everything for me. She had taken 4 weeks leave from work to help me through the first cycle of the Rev-lite trial and during leg recovery. I was in a wheel chair, in pain from myeloma and the bone fracture; both gave me restricted movement. I was not helpless so we discussed what I could or could not do and set some new achievement goals.
It is now 3 weeks since discharge. The myeloma and bone pain has reduced; I can move my leg sideways where previously I could not. I am using the walker more walking 30 minutes 3 times a day along with the walker exercises. There is less restricted movement; I can get in and out of bed by myself, showering myself, drying the dishes at the sink and back in charge of the TV remote. There has been a big step forward.
I am regaining my independence.
Lytic lesion right femur update 2
To contact us Click HERE
Update 2 on lytic lesion right femur from myeloma.
Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.
The rod and pins are all stable.
The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.
Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.
I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.
Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.
Now I’m getting all excited!
Last week I had an appointment with orthopedics to discuss bone progress and to x-ray the leg.
The rod and pins are all stable.
The myeloma lesion has not reduced; it seems to have increased slightly. As I am only 3 weeks into treatment for myeloma (Rev-lite trial) there is some catch up on lesion/myeloma reduction to go there. I did not expect the lesion to reduce the day treatment started. The bone doctor is reporting back to my Haematologist on this.
Next week I have an appointment for the completion of the first cycle of the Rev-lite trial where I can quiz my Haematologist on all those matters.
I am making good progress with leg strengthening and walking around the home with the big walker. I can put more weight on the leg now.
Next goal is to drive the car. To qualify I have to get in and out of the car, start and run the car (it’s an automatic) and be able to walk a reasonable distance.
Now I’m getting all excited!
Rev-lite trial: end of cycle 1.
To contact us Click HERE
Tuesday 25th May 2010 I completed my Rev-lite trial cycle 1 (28 days).
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
It was good news, the test results indicate that I am responding well to the new treatment. Because of the positive results I now start cycle 2 which again is 28 days.
Link: Rev-lite clinical trial. Commenced 28 April 2010. (Opens in a new window)
Test results:
IgG, globulin, total protein etc are all heading downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) during the 3 weeks of Lenalidomide still puts them within the "normal" range.
Side effects:
I have had no big reaction or side effects.
There has been fatigue in the afternoon and some tiredness. Some mornings I have a powernap of 20 to 30 minutes which sharpens me up. If I have a fatigue rest I usually sleep and/or doze for 1 to 2 hours in the afternoon.
There has been some dry skin so we split the body into 3; arms, torso and legs, moisturising one part daily giving total body moisturising of 3 times a week. Face, feet and top of hands seem to be the worst.
Day 9 Myra noticed a rash appearing in two spots on my back middle left, not itchy. We contacted the trial nurse who said to monitor. By the next day the rash had reduced disappearing on day 11. We think it was a heat rash.
Day 15 my mouth started to feel “furry” and the bottom lip became tender. My doctor talked me through saline solution, mouthwash and regular teeth cleaning which has helped. I have always used lip balm, just had to increase the use.
Dexamethasone gave me hiccups during the first few days (1 to 4) usually during and after food. No hiccups after the second or third lot of dexamethasone days 9 to 12 and 17 to 20. Sleep was good with only a couple of days of dexamethasone sleep disturbance.
Myeloma:
The 3 soft tissue plasmacytoma on my skull have reduced about 70% in 1 cycle. (70% that’s incredible, way to go Sid, calm down, calm down.) All my myeloma friends know the feeling!
At day 1 I had bone pain at my sternum extending to my left side. Coughing was painful. That pain has reduced.
I still have rib pain middle back both sides, left side worse and general back pain, reducing just a little, still work in progress.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days.
Myra makes sure my meals include plenty of fruit and vegetables, drink 2 Litres of fluid a day and eat Kiwifruit (Kiwi gold).
I take the constipation seriously and record my Laxsol and motions in my diary. The aim is one motion a day.
Right femur, Lytic lesion and fracture:
My leg continues to improve.
A bone fracture usually takes about 6 weeks to heal. It is 5 weeks since fracture so I can now use the leg more.
My new goal now is to be "walking" with one walking stick then move to walking normal.
Currently I am walking with the big walker so the new goal is achievable.
The other goal is to drive the car but first I have to walk.
One fear I had with my right leg was cramp from the Lenalidomide. I take a calcium and magnesium vitamin to assist that, so far no cramp.
Pain relief:
When I left hospital my dominant pain was the right femur fracture and general leg pain from the operation.
My pain relief was Oxycontin slow release capsules, 40mg morning, 30 mg evening and Oxynorm immediate release capsules. This was reduced on day 17 and 18 to 30mg and 20mg and is about to be reduced again. The dominant pain now is myeloma back and ribs. I have not used Oxynorm since day 1.
Peripheral neuropathy:
It is recommended not to take alpha-lipoic-acid on days one has Valcade.
I have some peripheral neuropathy from previous thalidomide treatment and take alpha-lipoic-acid capsules and vitamin B to reduce the symptoms. My haematologist said alpha-lipoic-acid has no interaction with Lenalidomide that he is aware of but just in case I reduced my alpha-lipoic-acid capsules from 1200mg a day to 600 a day. My decision, on reflection it should have been all or nothing. Day 23 I started to feel numb and cold feet. I have since resumed the alpha-lipoic-acid back to 1200mg per day, again my decision.
General:
Myra has returned to work after taking 4 weeks off to look after me. I certainly needed her in the first 2 weeks as I recovered from the leg rods and fracture. The second 2 weeks became a game of “what can Sid do for himself today”, a gradual process of regaining independence.
My myeloma bloggers and Lenalidomide web information have said if any problems or side effects arise from Lenalidomide it will be during the first cycle. Now I have completed cycle 1 I anticipate the worst is over and look forward to progressing through to the end of cycle 2 without incidents. That leaves me to focus on getting my right leg and walking back to normal.
Links: (Links open in a new window).
Lytic lesion right femur. Occurred April 3 2010.
Lytic lesion right femur update. April 8 2010.
Right femur fracture. Occurred April 14 2010.
Loss of independence. May 16 2010
Lytic lesion right femur update 2. May 23 2010
It's been two tough months
To contact us Click HERE
April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.
All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.
Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.
Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.
All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.
Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.
Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac
24 Haziran 2012 Pazar
It's been two tough months
To contact us Click HERE
April/May 2010 have been 2 tough months for me in my myeloma journey.
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.
All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.
Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.
Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac
Myeloma returned back to me last year with a relapse. Treatment failed to put me into a plateau stage, my hopes lay in new treatment available in a clinical trial.
Qualifying for the trial became the easy part, getting through 2 setbacks to commence the trial was more of a challenge. My trial started with one day to spare.
May bought with it the passing on of 4 myeloma friends, 2 bloggers and 2 local myeloma friends. There may have been more bloggers while I was in hospital.
One myeloma friend in particular left me grieving deeply. A 6 year myeloma friendship is difficult to end.
All is not lost, it is now 9 years since my initial diagnose with prognosis at that time of 3 to 5 years. My positive attitude, pro-active stance, interest in gaining myeloma knowledge and being willing to fight for myself remain. I will never give up. The love and support from my wife Myra has been huge, could not have got to where I am with out it.
With myeloma being a series of treatment and plateau I have always tried to get back to “normal” after treatment as soon as possible, living a normal life with myeloma pushed into the background.
There are now new generation treatments not previously available to me, combinations of old and new treatments and stem cell transplants giving us longer plateau periods along with trials for more new treatments underway now.
New treatments not available to me in 2001 include Thalidomide (Thalomid), Bortezomib (Valcade) and Lenalidomide (Revlimid).
Unfortunately Bortezomib and Lenalidomide are still not available in New Zealand through our public health funding service Pharmac.
Support for frontline treatment, relapsed disease, clinical trials and supportive care is far more advanced now.
The future looks promising, the search for a cure continues.
Since beginning blogging 18 months ago I have found a new source of help and inspiration, an international family of myeloma support on the internet. To all you folks who read blogs, comment or email to myself and other bloggers a very big thank you.
Links:
Revlite clinical trial
Coping with death of a myeloma friend
Treatment example
Pharmac
The Pine cone man
To contact us Click HERE
During myeloma relapse 1 recovery (2007) from myeloma treatment I had to devise ways to regain my fitness and strength.
About 3 blocks from home is a very large park with walkways, trees and seats. My initial goal was to walk to the park and return.
That was accomplished fairly quickly. Soon I was adding walking in the park extending the walk as fatigue reduced and I became fitter.
In the park are a large number of pine trees which shed pine cones good for home fire burning.
Ah ha I thought, there is another fitness idea.
My left humerus had just been rodded due to a plasmacytoma destroying the bone at mid shaft. The arm and shoulder needed strengthening. On my park walks I would now take an eco bag to fill with pine cones. I used the left arm to carry the bag flexing the arm along with other exercises as I walked along. Over time it all became stronger.
Then Myra dropped a bomb shell. She said, “We use electricity for heating. The pine cones will have to go.” After negotiations with her (I won) it was decided after drying out I would store the pine cones in rubbish sacks and place outside and cover with a rain proof cover ready to give to those who needed them over winter.
A bag full of dry pine cones on a cold, wet winter’s night is a welcome surprise.
I still continue collecting pine cones on my walks and have found some more parks with pine trees that I drive to. My two grandchildren have become expert pine tree finders.
Best time for collecting pine cones is after strong winds or a storm.
About 3 blocks from home is a very large park with walkways, trees and seats. My initial goal was to walk to the park and return.
That was accomplished fairly quickly. Soon I was adding walking in the park extending the walk as fatigue reduced and I became fitter.
In the park are a large number of pine trees which shed pine cones good for home fire burning.
Ah ha I thought, there is another fitness idea.
My left humerus had just been rodded due to a plasmacytoma destroying the bone at mid shaft. The arm and shoulder needed strengthening. On my park walks I would now take an eco bag to fill with pine cones. I used the left arm to carry the bag flexing the arm along with other exercises as I walked along. Over time it all became stronger.
Then Myra dropped a bomb shell. She said, “We use electricity for heating. The pine cones will have to go.” After negotiations with her (I won) it was decided after drying out I would store the pine cones in rubbish sacks and place outside and cover with a rain proof cover ready to give to those who needed them over winter.
A bag full of dry pine cones on a cold, wet winter’s night is a welcome surprise.
I still continue collecting pine cones on my walks and have found some more parks with pine trees that I drive to. My two grandchildren have become expert pine tree finders.
Best time for collecting pine cones is after strong winds or a storm.
Rev-lite trial: cycle 2, day 18.
To contact us Click HERE
My cycle 2 of Rev-lite trial is at day 18 with some good achievements in the last 2 weeks.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
There have been no problems with the trial treatment of lenalidomide and dexamethasone, less fatigue, sleeping well with the occasional extra nap when tired.
First achievement is with my fractured right femur where I have moved from using the big walker for support to using one crutch to using no crutch. I can now bear weight on the leg and only use the crutch in public to protect myself. A 30 minute walk each day is now a regular event.
Being able to walk means I can now drive the car which gives me more independence.
My main problem in showering has been fear of falling. This was overcome once I was able to bear more weight on the leg giving me confidence to shower and dry myself.
My pain relief has been reduced again, most myeloma bone pain has gone allowing me to spend time sleeping on my sides rather than only my back. To roll over from side to side in bed is bliss.
The big achievement is being able walk the stairs at home. Yesterday we moved from the single beds downstairs back to the master bedroom upstairs and into our Queen bed. The bed upstairs has a Woolrest woollen underlay between the mattress and bottom sheet. I missed the warmth it gives. Waking overnight to turn over I could feel warmer especially where my body was in contact with the underlay compared to no underlay. Best of all was sleeping with Myra next to me again.
Next achievement will be to maintain my Rev-lite trial progress, continue regaining strength and fitness and a return to work part time.
As I get better I am thinking less of myeloma, illness and myself. Now it is other things as well, signs of getting back to normal.
Rev-lite trial: end of cycle 2.
To contact us Click HERE
Tuesday 22nd June 2010 I completed my Rev-lite clinical trial cycle 2 (28 days) for myeloma.
Test results:
The test results available indicate that I am responding well to the new treatment.
Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Side effects:
I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.
Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.
Myeloma:
My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.
Right femur, Lytic lesion and fracture:
The fracture in the lytic lesion of my right femur is healing.
I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.
All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.
Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.
Pain relief:
My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.
Peripheral neuropathy:
I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.
During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.
As a test I missed the drink one evening and yes, the cramp was there the next morning.
I have now added some magnesium vitamins as well.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.
General:
We have moved from the single beds downstairs to the main bedroom upstairs.
I am now driving the car.
Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.
I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.
Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.
The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.
If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite trial: end of cycle 1.
Rev-lite trial: cycle 2, day 18
Test results:
The test results available indicate that I am responding well to the new treatment.
Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Side effects:
I have had no big reaction or side effects. This cycle 2 has been better than cycle 1 with minimal fatigue, not so sleepy, no rash, less dry skin. In cycle 1 my mouth started to feel “furry” and the bottom lip became tender about day 17. A similar thing occurred in cycle 2 but not as bad.
Dexamethasone has given me an increased appetite on some of the days I have it resulting in a 1kg (2.2 lbs) weight increase. There has been some sleep disturbance, nothing extreme enough for a sedative.
Myeloma:
My myeloma bone pain has nearly disappeared indicating to me that the treatment is working. I can now sleep on my sides, roll over in bed and see where I am going when I reverse the car. During the next cycle I will be eliminating the pain relief. That will help identify any myeloma that is remaining.
Right femur, Lytic lesion and fracture:
The fracture in the lytic lesion of my right femur is healing.
I am now walking with no crutch, walking 30 minutes regularly for exercise and walking stairs.
All my support equipment has been returned except for the crutch. I only use that if people are around me, there are stairs to climb or if the ground is unstable.
Next Tuesday I have an appointment with orthopedics to x-ray and sign off the leg.
Pain relief:
My pain relief of Oxycontin slow release capsules has been reduced during cycle 2 to 20mg morning, 10 mg evening. During cycle 3 I hope to stop the Oxycontin. Any pain relief will then be paracetamol.
Peripheral neuropathy:
I have some peripheral neuropathy from previous chemotherapy and thalidomide treatment. To reduce the symptoms I take alpha-lipoic-acid capsules and vitamin B.
During cycle 2 there has been a small increase in my peripheral neuropathy in my feet, mainly a numbness of the feet especially the soles. In week 3 I began to experience foot cramps in the morning starting about an hour before waking. An evening drink of tonic water containing quinine was recommended. The taste was Yuk so I added orange juice. Good advice as the drink eliminated the cramp.
As a test I missed the drink one evening and yes, the cramp was there the next morning.
I have now added some magnesium vitamins as well.
Constipation:
I have some constipation originating from Lenalidomide, dexamethasone and Oxycontin. To control constipation I use Laxsol laxative at morning and evening meals varying the dose as required taking more during dexamethasone days or if there is no motion for 2 days. During the fourth week of cycle 2 I used no Laxol.
General:
We have moved from the single beds downstairs to the main bedroom upstairs.
I am now driving the car.
Myra has observed that the hair loss at the two previous radiation spots for soft tissue plasmacytoma on my skull (Jan 2010) is starting to regrow. This is a pleasant surprise.
I am aiming for a return to work, initially 4 hours a day, after the right leg has been x-rayed and orthopedics say go.
Rev-lite clinical trial cycle 3 commences Wednesday 23rd June 2010.
The goal now is to continue the treatment through to end of cycle 4 when we redo all the initial tests, bone marrow biopsy, x-rays etc again to compare the beginning of treatment with the end of 4 treatment cycles.
If there is no change I get dropped off the trial. If there is improvement I can stay on indefinitely. So far there has been improvement.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite trial: end of cycle 1.
Rev-lite trial: cycle 2, day 18
Lytic lesion right femur update 3
To contact us Click HERE
Update right leg:
Update 3 on lytic lesion right femur from myeloma.
This week Tuesday 27th July 2010 I had an appointment with orthopedics to discuss bone progress at the lytic lesion on my right femur and to x-ray the leg
The rod and pins are all stable.
My treatment for myeloma (Rev-lite trial) is at cycle 3, end of week 1. I also have monthly infusion of Aredia.
X-ray showed the myeloma lytic lesion has not increased; it seems to have decreased and there is evidence of bone healing. I did not expect the lesion to reduce the day treatment started, the evidence is it is now working, starting to look like a real bone again. Because of good progress we will not have any radiation at this time. Radiation would have interfered with the trial protocol and the trial may have had to stop.
There is no pain in the right leg, I have more movement and strength is returning.
Left leg:
My left leg has minor myeloma deposits in the femur identified on previous x-ray. We are hoping the Rev-lite trial of Lenalidomide and dexamethasone will treat that.
Last Sunday I started to feel pain in my left femur about an hour after a long walk. This pain was similar to the lesion pain I originally felt in my right femur. Next day I had the right leg x-rayed and compared with the x-ray of 2 months ago. There was no change between x-rays, no fine cracks or fractures visible. It was difficult to determine the cause of pain so decision was to increase pain relief, stay off the leg for 2 to 3 days and monitor. So far the pain is reducing; today the leg is feeling better. The cause may be muscular or nerves.
Links: [Link opens in a new page]
Saturday 3rd April 2010: Lytic lesion right femur
Thursday 8th April 2010: Lytic lesion right femur update
Sunday 22nd May 2010: Lytic lesion right femur update 2
Tuesday 22nd June 2010: Rev-lite trial end of cycle 2
Update 3 on lytic lesion right femur from myeloma.
This week Tuesday 27th July 2010 I had an appointment with orthopedics to discuss bone progress at the lytic lesion on my right femur and to x-ray the leg
The rod and pins are all stable.
My treatment for myeloma (Rev-lite trial) is at cycle 3, end of week 1. I also have monthly infusion of Aredia.
X-ray showed the myeloma lytic lesion has not increased; it seems to have decreased and there is evidence of bone healing. I did not expect the lesion to reduce the day treatment started, the evidence is it is now working, starting to look like a real bone again. Because of good progress we will not have any radiation at this time. Radiation would have interfered with the trial protocol and the trial may have had to stop.
There is no pain in the right leg, I have more movement and strength is returning.
Left leg:
My left leg has minor myeloma deposits in the femur identified on previous x-ray. We are hoping the Rev-lite trial of Lenalidomide and dexamethasone will treat that.
Last Sunday I started to feel pain in my left femur about an hour after a long walk. This pain was similar to the lesion pain I originally felt in my right femur. Next day I had the right leg x-rayed and compared with the x-ray of 2 months ago. There was no change between x-rays, no fine cracks or fractures visible. It was difficult to determine the cause of pain so decision was to increase pain relief, stay off the leg for 2 to 3 days and monitor. So far the pain is reducing; today the leg is feeling better. The cause may be muscular or nerves.
Links: [Link opens in a new page]
Saturday 3rd April 2010: Lytic lesion right femur
Thursday 8th April 2010: Lytic lesion right femur update
Sunday 22nd May 2010: Lytic lesion right femur update 2
Tuesday 22nd June 2010: Rev-lite trial end of cycle 2
23 Haziran 2012 Cumartesi
Another Special Mother's Day
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It's been way too long since I last posted a blog. Life has gotten busy! Which is a good thing. Most of our free time these days are spent on the soccer and baseball fields. I feel like I am being pulled in a million different directions. Every night I plan on sitting down to write, but usually collapse on the couch and fall asleep!
Well, tomorrow is the big day. Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA! Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for. So he registered us for the triathlon. I had participated in it last year. Swimming is definitely not my strength but the race itself was so exhilarating. Just being surrounded by so many people (of all shapes and sizes) all participating in the same event. It is amazing to be there and especially to be a part of something so great. For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future. I can remember last year Mike telling me that he had no desire to do one. And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks. I am so proud of him. I know initially he signed up for me, but you know what, he really is excited about doing it!
I have not physically trained for this race all that much. Although my running is stronger than ever, Thursday was my first time in the pool since last year. I managed to swim the 16 laps necessary for tomorrow. It is not pretty and not fast, but I can get from point A to point B. Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run. I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!
It's funny I can feel the anxiety from many of my friends doing the race tomorrow. And all of them have been training for it. I am probably the one who is least prepared for it! Yet I am so excited to do it. You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma. Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma. I can remember swimming in the last triathlon and struggling with the pain in my sternum. Little did I know what was really going on with me. The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!! In the last year I have felt so close to death. I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday. I feel so happy and so incredibly blessed for how my life is today. It's funny so many people tell me that I should move on. That last year was last year and this is now. But you know what? Every day I do reflect about the past year. But I also think of where I am today. I feel stronger than ever. In fact I am up to running 10 miles! I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am. As we all know today is all we have. Life can change on a dime as I have experienced firsthand. So everyday I feel great, I get out there and run and enjoy it fully. I beat this cancer this time and I only plan on getting stronger from this point. So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF. Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live. Today she is still in a "Complete Response". I am so grateful for all of her efforts with the MMRF. The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years. These treatments, now the standard of care for multiple myeloma patients have helped to almost double the life expectancy among some patients. Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People. Tomorrow I am dedicating my race to Kathy Giusti. I feel strongly that I am here today largely because of her efforts. It is my way of thanking her for all that she has done for the Multiple Myeloma World. Her strength and perseverance to be there for her daughters, her refusal to give up hope, and her dedication to finding a cure, has truly been such an inspiration for me. So on this Mother's Day, I will be thinking of one very special woman. Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line, I will be thinking of you!
Happy Mother's Day to all the mom's out there. To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie
Well, tomorrow is the big day. Mike and I are competing in a Mother's Day Sprint Triathlon in Sudbury, MA! Before I went into the hospital in November before my transplant, Mike wanted to make sure that we both had something BIG to look forward to and to strive for. So he registered us for the triathlon. I had participated in it last year. Swimming is definitely not my strength but the race itself was so exhilarating. Just being surrounded by so many people (of all shapes and sizes) all participating in the same event. It is amazing to be there and especially to be a part of something so great. For so many it has been a fitness goal or on their bucket list, for others, it is a training triathlon for a bigger race in the future. I can remember last year Mike telling me that he had no desire to do one. And now today, he has gotten in the best shape of his life, he has become a great runner and he has been swimming for the last 12 weeks. I am so proud of him. I know initially he signed up for me, but you know what, he really is excited about doing it!
I have not physically trained for this race all that much. Although my running is stronger than ever, Thursday was my first time in the pool since last year. I managed to swim the 16 laps necessary for tomorrow. It is not pretty and not fast, but I can get from point A to point B. Yesterday Mike, my friend Shayna and I did a brick. We did a 9 1/2 mile ride followed by a 2 1/2 mile run. I forgot how challenging the transition is from riding to running. My legs felt like tree trunks!
It's funny I can feel the anxiety from many of my friends doing the race tomorrow. And all of them have been training for it. I am probably the one who is least prepared for it! Yet I am so excited to do it. You see, it is coming up on my one year anniversary since I was diagnosed with Multiple Myeloma. Last year at this time I was still struggling with a healing sternum and I had a strange bump on my chest which was later confirmed to be a plasmacytoma. I can remember swimming in the last triathlon and struggling with the pain in my sternum. Little did I know what was really going on with me. The fact that it is one year later, a stem cell transplant later..... I can't freaking believe it!! In the last year I have felt so close to death. I honestly was doubting whether or not I was going to make it to see my kids begin school last September, let alone be running again or participating in a Triathlon!
As I explained to Mike on the soccer field this morning, I feel like I need to pinch myself everyday. I feel so happy and so incredibly blessed for how my life is today. It's funny so many people tell me that I should move on. That last year was last year and this is now. But you know what? Every day I do reflect about the past year. But I also think of where I am today. I feel stronger than ever. In fact I am up to running 10 miles! I think reflecting on the last year helps me really appreciate today and how lucky I feel and how happy I am. As we all know today is all we have. Life can change on a dime as I have experienced firsthand. So everyday I feel great, I get out there and run and enjoy it fully. I beat this cancer this time and I only plan on getting stronger from this point. So when it tries to attack again I'm ready to put up a good fight!
As I was running the other day, reflecting on all that has happened, a special person came to mind, Kathy Giusti, Multiple Myeloma Survivor and founder of the Multiple Myeloma Research Foundation, MMRF. Kathy was diagnosed in 1996 and at the time was told that she only had 3 years to live. Today she is still in a "Complete Response". I am so grateful for all of her efforts with the MMRF. The MMRF has played such a big role in bringing four new treatments for myeloma in the past four years. These treatments, now the standard of care for multiple myeloma patients have helped to almost double the life expectancy among some patients. Kathy Giusti was just recently named one of Time Magazine World's 100 Most Influential People. Tomorrow I am dedicating my race to Kathy Giusti. I feel strongly that I am here today largely because of her efforts. It is my way of thanking her for all that she has done for the Multiple Myeloma World. Her strength and perseverance to be there for her daughters, her refusal to give up hope, and her dedication to finding a cure, has truly been such an inspiration for me. So on this Mother's Day, I will be thinking of one very special woman. Kathy, as I am struggling in the pool swimming my last lap, pedaling to the transition area, and running to the finish line, I will be thinking of you!
Happy Mother's Day to all the mom's out there. To my mom, I love you and miss you so much and I am counting the days until you and dad come out to visit!
Love-Jeanie
Reassuring news about bisphosphonates and ONJ
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Whenever I travel to speak to support groups, I get asked about Zometa and the risk of developing osteonecrosis of the jaw (ONJ). I saved this article from MedPage Today to help reassure those of you with concerns:
ASCO: Low Rate of Jaw Disease with Bone Drugs in Myeloma
By Ed Susman, Contributing Writer, MedPage Today
Published: June 06, 2012
Reviewed by Dori F. Zalenznik, MD;Associate Clinical Professor of Medicine, Harvard Medical School, Boston and Dorothy Caputo, MA, BSN, RN, Nurse Planner
CHICAGO – Osteonecrosis of the jaw remains a relatively rare event among multiple myeloma patients treated long-term with bisphosphonate therapy, researchers said here.
“Overall cumulative osteonecrosis of the jaw was low at 5.8 years,” Gareth Morgan, MD, PhD, of the Institute of Cancer Research at the Royal Marsden Hospital in London, said in an oral presentation at the annual meeting of the American Society of Clinical Oncology.
The rate was 3.7% in the patients on zoledronic acid (Zometa) and 0.5% (P<0.001) with clodronate, with most events occurring in the 12-to-36-month time window, Morgan said. However, he noted that if patients were also receiving thalidomide therapy to battle myeloma, the overall rate of osteonecrosis of the jaw dropped to around 1% of the patients.
He discussed updates to the MRC Myeloma IX study, in which 1,960 patients were assigned to different treatment strategies that included stratification by type of bisphosphonate assigned.
In the overall study that has been previously reported, treatment with zoledronic acid was associated with an overall survival benefit (P=0.03), overall increased progression-free survival (P=0.01), and a reduction in skeletal events.
This year, Morgan focused on how treatment affected adverse events including renal disease and osteonecrosis of the jaw. Renal disease emerged in about 5% to 7% of patients on either zoledronic acid or clodronate, in either treatment strategy over the long-term study, he said. At 2 years, cumulative renal failure events occurred in 5.2% of patients on zoledronic acid and in 5.8% of patients on clodronate.
“Renal impairment is common in patients with multiple myeloma,” Morgan said in his oral presentation. He said renal disease can be caused by myeloma itself as well as patients’ susceptibility to infection. Anti-myeloma therapy and anti-resorptive therapy with bisphosphonates also may increase kidney risks.
Similarly, Morgan said, osteonecrosis of the jaw has emerged as a disease/treatment adverse event troubling to doctors and their patients. He defined osteonecrosis of the jaw as exposed bones in the maxillofacial area that occur in association with dental surgery, or occur spontaneously, with no evidence of healing.
Morgan also noted that among patients for whom recovery data was available, four of nine patients on zoledronic acid who developed osteonecrosis of the jaw made a complete recovery, and two others showed improvement. No change was observed in the other patients.
“The message of that trial is to show that osteonecrosis of the jaw is a relatively rare event,” said Rafael Fonseca, MD, professor of medicine at the Mayo Clinic in Scottsdale, Ariz. “The important message of the trial is to show that a more powerful bisphosphonate does help with bone disease. It showed that overall survival was better with zoledronic acid.”
Morgan said that to prevent osteonecrosis of the jaw, all patients should receive a comprehensive dental examination before treatment with bisphosphonates, including the removal of unsalvageable teeth. All invasive dental procedures should be completed before initiating bisphosphonate therapy, periodontal procedures should be completed, and ill-fitting dentures should be fixed prior to treatment.
Does that help?
There are lots of reasons not to use bisphosphonates (Aredia or Zometa) each month, especially after the second year; cost, exposing your body to very intense chemicals, and what looks to be a declining benefit after several years. But fear of ONJ should not be one of them.
May I suggest a compromise? If you have multiple myeloma and aren’t comfortable taking bisphosphonates indefinitely, try reducing the frequency to every second or third month.
Feel good and keep smiling! Pat
More about exciting FDA Review Committee recommendation to approve Kyprolis
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The dust is beginning to settle after yesterday’s unanimous recommendation by the FDA’s Advisory Committee to fast track Kyprolis (carfilzomib) for FDA approval for use in refractory multiple myeloma patients.
Honestly, I think the FDA’s strong support of the drug caught the folks at Onyx a bit off-guard. I know they felt the drug had a real shot at approval this summer. But now, barring any unexpected data or off-the-wall controversy, approval seems all but certain.
I excitedly reached-out to Danielle Bertrand, Senior Manager of Public Affairs at Onyx Pharmaceuticals, after I returned home from my monthly support group meeting. It was late and I’m sure she–and the entire Onyx team–were exhausted.
Still, I was disappointed by her response:
Danielle, on behalf of multiple myeloma patients everywhere, I would like to thank you and everyone at Onyx for their persistence and hard work developing Kyprolis. I know it hasn’t been easy!
My question is this: If and when Kyprolis gains fast-track approval sometime in July, how long do you expect it will take for the drug to be available for distribution? Will it only be available at larger cancer centers, or local oncology offices too?
Her answer was short and very vague, to say the least:
“If the FDA approves Kyprolis, we will be prepared for launch shortly afterwards and are committed to bringing it to patients as soon as possible.”
That’s it? I emailed her one simple question, knowing I would be gone until late…
To be fair, I’m sure the Onyx team still doesn’t want to “jinx” their application. After all, this vote was only advisory. Official FDA Fast-Track approval won’t come until sometime in July.
But I have met a number of high ranking Onyx officials over the past three years. And I can tell you this with confidence: They will be ready to launch and distribute product FAST.
So let’s back-up and I’ll share the official press releases that Onyx released yesterday about the vote:
Company to Work with FDA toward PDUFA Date of July 27, 2012
SOUTH SAN FRANCISCO, Calif., June 20, 2012 /PRNewswire/ — Onyx Pharmaceuticals, Inc. (Nasdaq: ONXX) today announced that the U.S. Food and Drug Administration’s (FDA) Oncologic Drugs Advisory Committee (ODAC) determined by a vote of 11-0 [with 1 abstention] that, in patients with relapsed and refractory multiple myeloma who have received at least two prior lines of therapy that included a proteasome inhibitor and an immunomodulatory agent (IMiD), the benefit-risk assessment is favorable for the use of Kyprolis™ (proposed brand name for carfilzomib). Onyx is developing Kyprolis for use in multiple myeloma across a variety of treatment lines.
“Today’s ODAC recommendation is an important regulatory milestone in the review of Kyprolis for relapsed and refractory multiple myeloma,” said Ted W. Love, M.D., Executive Vice President, Research and Development and Technical Operations at Onyx Pharmaceuticals. “Onyx is committed to bringing Kyprolis to patients as quickly as possible and looks forward to working closely with the FDA as the agency completes its review.”
The Prescription Drug User Fee Act (PDUFA) date for completion of FDA review of the Kyprolis NDA for accelerated approval is July 27, 2012. The ODAC provides FDA with independent expert advice and recommendations, however the final decision regarding approval is made by FDA.
The Kyprolis NDA is based on the 003-A1 study, an open-label, single-arm Phase 2b trial as well as supportive data from additional studies. The 003-A1 trial evaluated 266 heavily-pretreated patients with relapsed and refractory multiple myeloma who had received at least two prior therapies, including bortezomib and either thalidomide or lenalidomide.
So there you have it. For a company that has always been aggressive and pushed-the-envelope–For example, picking a trade name prior to FDA approval, a very confident move–I was a bit surprised that Danielle kept her comment so brief and close-to-the-vest.
Guess we are going to have to wait one more month for the answer to my question, which I will ask again!
This is good news for patients who are running out of treatment options–at least 25% of them.
Reviewing these exciting–yet disappointing–patient response numbers reminds me that I never ran the third installment of my three part series:
Immunotherapy: The good, the bad and the ugly. Part Three: The Ugly.
I will post that first thing tomorrow. Here’s a hint: It’s all about the money.
Feel good and keep smiling! Pat
Immunotherapy: The good, the bad and the ugly. Part Three: The UGLY!
To contact us Click HERE
In theory, immunotherapy is a good thing–a very good thing.
And following news at ASCO about a number of positive advances in the field–including using targeted antibodies and sophisticated drug and immuno combinations to fight everything fro breast cancer to multiple myeloma–excitement was running high in Chicago earlier this month.
I wrote three or four posts about it here, and an even more on our our sister site, HelpWithCancer.org.
For the most part, my reports were positive. And why not? This is an exciting time! But in my second installment of my three part series:
Immunotherapy: The good, the bad and the ugly. Part Two: THE BAD
I closed this way:
The “BAD!” wasn’t hard to find. It wasn’t even buried deep on page two of the story.
There it was, plain as day: “The median progression-free survival (PFS) for patients receiving T-DM1 was 9.6 months, compared with 6.4 months in the control group.” This was considered to be “statistically significant.”
3 months? Media fireworks over 3 months? Sorry, but this is “BAD!” A myeloma drug wouldn’t even get a sniff over a three month improvement in PFS!
And no overall survival data (OS) was available yet. The study is too new. Researcher’s can’t even prove that T-DM1 helps patients live longer. BAD!
As a matter of fact, elotuzumab has produced results three or four times longer than that. And combine elotuzumab–or other exciting new myeloma drugs like pomalidomide–with one or more existing anti-myeloma therapies and this number soars to 15 months or more! Headline news, right? Nope. Not even a whimper from the mainstream media. BAD!
Gene therapies, Dabrafenib and Zelboraf also made big news. But their PFS numbers were also less impressive than elotuzumab or even daratumumab.
BAD!
Why did these two drugs create such a buzz? They’re melanoma drugs.
To be fair, melanoma is far and away the most common cancer. And both metastasized melanoma and breast cancer are incredibly difficult to treat.
It is hard to argue that T-DM1 is achieving amazing results in around 25% of advanced breast cancer patients–the mom featured in the news stories is a prime example of that. And T-DM1 is a technological marvel, no doubt about it.
But a half dozen or more myeloma therapies in the pipeline achieve better results than any of these drugs–and they are working in patients that have relapsed and become refractory to a number of existing therapies, too.
So while there was some good news coming out of ASCO, it wasn’t necessarily what was featured on TV or the Wall Street Journal. Myeloma research continues to lead the industry in every category. The average speed at which new drugs make the market. The low number of side effects experienced when using the new drugs. And the PFS numbers are off the charts, when compared to other cancers being focused on at ASCO.
That isn’t bad, it’s GREAT!
But there truly is an ugly side to all of this as well. I will conclude the third part of my three part series at the end of the week: The UGLY!
And it is very, very ugly…
As you can tell, you can spin a lot of this news several ways. And when I initially composed my outline for this third and final installment: THE UGLY, it all had to do about money.
About how money runs insidiously throughout the process, like heavy marbling you find throughout a juicy, corn fed steak. No matter how hard you try, you can’t get all of the fat out…
But that isn’t what I’m going to write about today. Does too much money corrupt? HECK YES! Do the drug companies wield way too much power and control over what is going to be researched and when? NO DOUBT!
But that’s too easy a target.
No, today I’m going to write about something that I recently learned about after meeting with a researcher at the airport before I boarded my plane headed home from Chicago. Disappointing. Discouraging. And yes, UGLY!
Gary Blau is a researcher at Purdue University. I can’t report specifically yet about his research, because after years of struggle and being dismissed off-hand by the medical community, Gary and his team has finally convinced University officials to consider backing some of their work. OK. So I guess it always does come back to money, doesn’t it!
But that’s not my point. The ugly part of all of this is how easy it would be to improve overall patient quality of life–and possibly improve the effectiveness of a large number of chemotherapy and other important drugs–if a few inexpensive changes were made in the way patients are monitored in their clinics and hospitals.
In other words, the technology exists to improve how well existing drugs work–and how well patients feel RIGHT NOW. TODAY!
The Purdue group calls it individualized medicine. And you may have read Gary’s comments here from time to time as he shares his angst over how multiple myeloma patients are treated–including me!
Gary has convinced me that by using a few, simple and relatively inexpensive tests early-on in the diagnostic process, myeloma patients could be spared the pain and frustration they endure as doctors guess which dose of what drug might help them most.
Imagine if your doctor didn’t have to guess! Imagine if he already knew which chemotherapy drug was most likely to work best–and at what dose–right up front.
The ugly? The technology exists to do this very thing. NOW!
But for some reason, the medical establishment refuses to embrace the idea. Is it resistance to cost. I’m sure it is. But a few thousand dollars up-front could save tens of thousands of dollars down the line.
Like the mutilated test subjects on Dr. Moreau’s Island, many myeloma patients are so beat-down and sick by the time a new drug is made available to them, the effectiveness is reduced significantly.
Just take a look at the test subjects used in the carfilzomib trials that were examined during Wednesday’s FDA hearing. Having already endured an average of five previous lines of treatment, 70% had heart, blood pressure and pulmonary issues coming into the trials. So it was no surprise that 10 of them died from cardiac related causes.
But had these patients been treated more efficiently and given help to stay stronger and healthy up-front, they may well have been able to withstand the rigors of this new experimental chemotherapy drug.
UGLY! Ugly that so many simple, small steps could help us live longer and better lives. No expensive clinical trials are necessary. No expensive, experimental drugs. And I haven’t even touched on how much better we would all feel–and how much better the current drugs we take now would work–if our doctors new what dose would work best for us–and what time of day those doses should be given.
Now doesn’t that sound simple–and make perfect sense? Gary calls that part of the program “individualized dosing.”
I have applied individualized dosing principles to one of my important medications. AND IT WORKS! I am going to write about that part of all of this over the weekend. Fascinating stuff. And so disappointing–SO UGLY–that such a simple change or tweak can help a drug work so much more effectively.
And help patients feel so much better, too!
Immunotherapy: The good, the bad and the ugly. All we can do is hope that these new drugs are going to be administered–not just based on the highest dose our poor bodies can tolerate–but in doses that kill the cancer while helping us live stronger and better lives.
Now THAT would add months and years to our lives, don’t you think? I know that my body feels like it is breaking-down after months and months of RVD therapy…
Should I suffer silently or share the pain?
Maybe Gary’s right. Maybe there is a better way! And if there is, how UGLY that health care professionals aren’t using it to help us NOW!
Feel good and keep smiling! Pat
Exciting new research helps prove timing can be everything!
To contact us Click HERE
Have you read my last two posts? Think the timing of when and how you use a drug isn’t important? Check-out this research development which relies on timing to help break-down myeloma cells:
Stopping and Starting Cancer Cell Cycle Weakens and Defeats Multiple Myeloma
The study, published online by the journal Blood, is the first to show that precise timing of therapies that target a cancer cell’s cycle — the life phases leading to its division and replication — disables key survival genes, resulting in cell death.
How about that? Let’s read some more:
The drug that delivers the weakening jab at the cell cycle is the experimental agent PD 0332991, which allows bortezomib, a proteasome inhibitor already approved for use in myeloma and lymphoma, to land the final defeating blow at lower than normal doses.
A new, exciting therapy that depends upon the timing of the therapy in order to “land the final defeating blow at lower than normal doses.”
Sort of makes Gary’s point about how important it can be to research the proper dosing and dosing schedule BEFORE docs experiment on live patients–LIKE US!
Here is a link to this well-timed article (pun intended!) in Science Daily:
The amazing PD 0332991, a small molecule synthesized by Pfizer
More exciting research news. Throw enough stuff at the wall and something has got to stick, right? Good luck to lead researcher, Dr. Chen-Kiang, and her laboratory colleagues!
Feel good and keep smiling! Pat
21 Haziran 2012 Perşembe
Who let the dexo dogs out?
To contact us Click HERE
Who let the dexo dogs out; they mauled me and left me with diabetes.
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.
Links (open in new page):
Oral Candina
Clinical trial
My long term use of dexamethasone was a big contributor to my diabetes; it is a dexamethasone side effect.
We had been monitoring my glucose levels; there was a gradual increase but not too alarming. I do have a family history of diabetes.
Over the last 3 weeks I was experiencing increasing fatigue and tiredness. As I am on a clinical trial I kept the hospital informed. My mouth developed what looked like thrush, white patches on the tongue and mouth so off the GP who diagnosed oral Candida. This was treated with lozogenes. I was to return in 2 days.
Candida appears on the lining of your mouth and tongue. A compromised immune system increases the risk. An underlying condition such as diabetes may be a cause.
My condition quickly progressed to increased fatigue, dizziness, light headedness, brain fog, excessive thirst and increased urinary frequency (dibetes symptoms). Next morning I could barely function, off to the hospital where tests showed I was badly dehydrated and had a very high glucose reading. Diagnose was diabetes type 2 resulting in 5 days in hospital to control it. During the 3 weeks I lost 9 kg (20 lbs), need to put back on half of that.
When I was discharged I came home with a bad attitude, I wanted to leave my diabetes at the hospital. I did not want the 3 times daily blood glucose monitoring, the twice daily insulin injections, the constant thinking about what I can or can’t eat and all the new knowledge I need to live with diabetes. It was an unwanted intrusion into my life with myeloma.
I am living with myeloma, learnt a lot about it and was coping well. The Rev-lite trial has lowered my IgG levels, bone pain has gone, Lenalidomide and dexamethasone is working. One more cycle would get me to the next stage, less dexamethasone.
There is no escape, my attitude had to change and slowly it has. I have put all my diabetes information, monitoring meter, insulin pen, and needles into a cardboard box, a one stop shop. That’s the same in my head space; the diabetes is in a box not interfering with my myeloma.
Links (open in new page):
Oral Candina
Clinical trial
Rev-lite trial: end of cycle 3.
To contact us Click HERE
Tuesday 20th July 2010 I completed my Rev-lite clinical trial cycle (28 days) for myeloma.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Test results:
The test results available indicate that I continue to respond well to the new treatment. Results from other tests that take longer to complete are not yet available. My myeloma results IgG, globulin, total protein etc continue to head downwards. The drop in my bloods (platelets, neutrophils, haemoglobin, red counts etc) at the end of 3 weeks of Lenalidomide puts them at the bottom of the "normal" range as expected. It is noted that Anaemia is present.
Diabetes:
During cycle 3 I had suffered Candida which in combination with long term dexamethasone use resulted in my blood/sugar levels sky rocketing giving me diabetes type 2.
Link: Who let the dexo dogs out?
Dexamethasone increases the blood sugars. The final dexo days (17 to 20) coincided with my hospitalisation so the dexo was stopped for those four days. During cycle 4 on dexo days I control my blood/sugar levels by eating less carbohydrates and regular exercise which for me is walking. If this does not work I then will be increasing my twice daily insulin dosage.
Weight loss:
During this month I lost 7kg (15lbs) due to the Candida and diabetes, so far 1kg has gone back on. With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Pain relief:
My pain relief of Oxycontin slow release capsules has been stopped. Any pain relief will be controlled by paracetamol. There were no side effects during Oxycontin reduction but some side effect experiences after stopping completely. Mainly difficulty in getting to sleep, waves of restlessness in the arms. This reduced over 4 days and is no longer present.
Peripheral neuropathy:
During cycle 3 there has been a very small increase in my peripheral neuropathy in my feet, mainly a numbness of the soles. This does reduce during the 4th week of no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic -acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, no sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Cycle 4 has commenced including the scheduled dexo.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite trial: end of cycle 4.
To contact us Click HERE
Tuesday 17th August 2010 I completed my Rev-lite clinical trial cycle 4 (28 days) for myeloma. Trial protocol states that after 4 cycles the status of my disease will be reassessed. If my disease has become worse the trial will stop. If my disease has shown improvement I remain on the trial.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.
Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.
Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8
Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.
Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.
Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.
My disease has improved allowing me to remain on the trial.
From cycle 5 onwards the Lenalidomide dosage remains at 15mg for 21 days then 7 days free. Dexamethasone dosage remains at 20mg but only given for the first 4 days. For cycles 1 to 4 dexamethasone was 4 days on 4 days off for 21 days; the reduction is welcomed. A daily Aspirin continues as before.
I can now remain on this trial indefinitely or until it officially ends. Reasons for me stopping the trial is complications from side effects or if there is a return of myeloma.
A skeletal x-ray has been scheduled for 2 months time.
This is very heartening news for me. After 9 years since myeloma diagnose I am virtually myeloma free again heading back to normal all thanks to Lenalidomide. For how long, can't say, that's the nature of myeloma and in the hands of God. I feel humble that I received the opportunity to participate in the trial. There are others who Lenalidomide has not worked, my heart goes out to them.
I am convinced that the lower dosage of Lenalidomide and dexamethasone is still effective and does reduce the side effects.
Cycle 4 summary:
There were no significant problems during cycle 4 other than a minor head cold and later coughing phlegm for 3 days (it is winter in NZ). During week 3 of the previous 3 cycles there was a deteriation of the mouth and bottom lip. This was not present in the mouth this time, only a minor feeling on the lip.
Bowels were generally normal, Laxol and Kiwi fruit used sometimes for constipation during dexo days.
There was only one afternoon of fatigue this cycle, though there were occasional pockets of tiredness in the late afternoon. My strength is returning after the diabetes problem allowing me to walk 30 to 40 minutes a day.
I did get some minor cramp in my feet on days 15 and 16. First time for a while even though I am taking vitamin E for cramp.
Starting in the 4th week the skin at my protaphane (insulin) needle sites became bruised or blood spots appeared. This was thought to be related to my lower platelets and the Aspirin which thins the blood. We are currently monitoring this.
There are problems with dexamethasone side effects. Refer to the dexamethasone heading below.
Overall there was an improvement on the first 3 cycles.
Test results:
Today’s results are not yet available. The test results from 4 weeks ago indicate that I continue to respond well to the new treatment.
My IgG at beginning of the trial (28th April) was 32.5 g/L (USA 3250 mg/dl) last month (20th July) 10.7 (USA 1070). Normal range is 7 to 16.
Platelets: 306 now 172.
HB: 115 now 126
RBC: 4.13 now 4.3
WBC 6.7 now 4.8
Diabetes:
Dexamethasone increases the blood sugars. During cycle 4 on dexo days I controlled my blood/sugar levels by eating less carbohydrates and walking for regular exercise. The other option of increasing my insulin did not eventuate.
To help with food shopping, cooking and eating I have created a spreadsheet which lists food item, protein, carbohydrates and sugar, a good guide.
Weight loss:
During cycle 4 my weight remained constant at 65 kg (143 lbs). With my diabetes food recommendations now in place I don’t expect to regain much weight at all.
Dexamethasone:
The accumulative effect of dexamethasone over 4 cycles and earlier in the year combined with cyclophosphomide has accentuated some side effects.
Sleep problems during dexamethasone days have become an issue, the wide awake until early morning is there. I am reluctant to take my sedative (Zopiclone) as I get withdrawl symptoms when I stop. That is sleep for 30 minutes then wake with waves of restlessness in my arms and torso for about 3 hours. I have previously used morphine based pain relief some times in high dosages: Kaponal, m-elson, and recently Oxycontin. Perhaps the Zopiclone triggers some residual Morphine still in my body creating a craving. That’s my theory.
I can be aggressive and loud in my speech, very opinionated, don’t hold back. This was a big problem during the first 2 weeks after retuning from hospital with diabetes. I was in denial and angry, not the normal me. Now that I have accepted the diabetes the anger has reduced and we have put in place some systems to down size my speech problems. There are other ways I can do stress release.
I am more emotional this cycle, the tears can flow freely out of nowhere, this maybe a combination of the dexamethasone and the diabetes trauma.
Link: Dexamethasone for myeloma.
Peripheral neuropathy:
During cycle 4 there has again been a very small increase in my peripheral neuropathy in my feet, mainly an increase in the numbness of the soles. It is present in my left hand, but not the right hand. Peripheral neuropathy does reduce during the 4th week when there is no Lenalidomide. Keeping my feet warm, using vitamins and Alpha-lipoic-acid helps reduce the peripheral neuropathy symptoms.
General:
The diabetes was a big blow to me, I have now accepted it. Extra work now includes a change in eating habits, learning the nutritional values of food, avoiding sugar, keeping a daily food diary, the three times a day finger pricks for blood/sugar monitoring, two times a day insulin injections and gaining diabetes knowledge. There will be a posting soon on the diabetes impact on my myeloma and what I am doing to keep it simple.
Links: (Links open in a new window).
Rev-lite clinical trial. Commenced 28 April 2010.
Rev-lite clinical trial: end of cycle 1.
Rev-lite clinical trial: cycle 2, day 18.
Rev-lite clinical trial: end of cycle 2.
Rev-lite clinical trial: end of cycle 3.
Back in Blogsville and an earthquake.
To contact us Click HERE
Back in Blogsville.
Not many postings from me recently mainly due to the impact of being diagnosed a diabetic. Diabetes has taken the wind out of my sails.
I am comfortable with myeloma, had it for over 9 years, been through several treatment/remission/relapse phases, keep up to date with myeloma news and now it seems Revlimid and dexamethasone have lowered my IgG levels down into the normal range.
Diabetes is an unwelcome invader into my body, just like myeloma was. Eight weeks on I am coping much better, accepted it and moving on to find my new normal.
Let the postings resume.
Earthquake.
Three days ago there was a major earthquake in New Zealand (7.1) causing considerable damage to a major south island city, Christchurch. I live about 1050 km (655 miles) away in the north island. All is well here.
Buildings in NZ these days are built to strict earthquake codes and seem to have survived major damage. Older buildings and homes seem to have suffered considerable damage, many are being demolished.
There was no loss of life mainly due to the quake occurring at 4.30am.
Not many postings from me recently mainly due to the impact of being diagnosed a diabetic. Diabetes has taken the wind out of my sails.
I am comfortable with myeloma, had it for over 9 years, been through several treatment/remission/relapse phases, keep up to date with myeloma news and now it seems Revlimid and dexamethasone have lowered my IgG levels down into the normal range.
Diabetes is an unwelcome invader into my body, just like myeloma was. Eight weeks on I am coping much better, accepted it and moving on to find my new normal.
Let the postings resume.
Earthquake.
Three days ago there was a major earthquake in New Zealand (7.1) causing considerable damage to a major south island city, Christchurch. I live about 1050 km (655 miles) away in the north island. All is well here.
Buildings in NZ these days are built to strict earthquake codes and seem to have survived major damage. Older buildings and homes seem to have suffered considerable damage, many are being demolished.
There was no loss of life mainly due to the quake occurring at 4.30am.
Rev-lite trial: end of cycle 5.
To contact us Click HERE
I was at daystay on Tuesday for my monthly Rev-lite trial consultation and Aredia.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That's 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn't stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.
All is well, all is stable, and test results remain in the normal zone, an uneventful medical month.
Cholesterol has returned to normal as well thanks to the diabetic diet.
The glucose reading is excellent considering what it was at diabetes diagnose. Thanks to the diet my fasting HbA1c % = 6.6
Perhaps I can now loosen up a bit and have some occasional treats.
I did have a pie on Fathers day, the local Green Bay Bakery award winning chicken and vegetable pie. I sniffed it, slowly ate it and made it last.
That ends cycle 5, now onto cycle 6.
I am now on my steroid dexamethasone 4 days a cycle which has made a big difference to quality of life. That's 23 days without it. Sleep has returned to normal except for those 4 days, the real Sid has returned. That doesn't stop me from talking to drivers who take the space between me and the next car or telling the footy referees of their mistakes.
Myeloma for me now is a series of treatment, remission, relapse etc though I hope the latest treatment is an extended remission. We use the theory when in remission do it now rather than later.
Therefore we are having a holiday in November, a 10 day coach tour of the bottom half of the South Island. We have previously seen the top half now we take in the remainder. Being a coach tour I can sit back to be taken every where and look out the window at the scenic wonders. We intend to take a scenic flight over the Southern Alps, Mt Cook and the glaciers as a big memory.
I am returning to work at Beca part time on the 20th, 3 days a week, 4 hours a day. There I am looking forward to the people contact and more brain involvement. More time depends on how I cope and work load availability, no worries about that.
20 Haziran 2012 Çarşamba
Transplant timing questions continue to top my “most commonly asked question” list
To contact us Click HERE
I hope everyone had a wonderful Father’s Day Weekend!
Apparently, families of multiple myeloma patients weren’t all relaxing at the beach. I often receive emails asking for my opinion about if and when a multiple myeloma patient should undergo an autologous (using a patient’s own stem cells) stem cell transplant–holiday weekend or not.
Questions related to transplant timing continue to top my “most commonly asked question” list.
This excerpt from May’s edition of Clinical Oncology should help shed some light on the subject.
The article references one of several new studies which seem to show that waiting to undergo a stem cell transplant until a patient relapses years down the line doesn’t affect the efficacy of the procedure:
Timing of Stem Cell Transplantation for Multiple Myeloma Studied
Early and delayed autologous stem cell transplantation (SCT) result in similar overall survival in patients with multiple myeloma, even in those cases where immunomodulatory therapies have been used, a new study has found.
It has long been known that these two SCT approaches produce comparable outcomes in multiple myeloma patients; however, with the introduction of several new therapies for transplant-eligible patients over the past decade—including thalidomide (Thalomid, Celgene), lenalidomide (Revlimid, Celgene) and bortezomib (Velcade, Takeda/Millennium)—the management of these patients has changed significantly, and some have questioned how, if at all, this would affect SCT in this setting. Traditionally, early transplantation has been favored because of the side effects associated with older-line therapies. However, this has changed with the advent of new, immunomodulatory therapies that are relatively well tolerated, even for extended periods.
In a study published in the March 15 issue of Cancer (2012;118:1585-1592, PMID: 22009602), an international team of researchers representing the Mayo Clinic and the San Giovanni Molinette Hospital in Turin, Italy, studied 290 multiple myeloma patients who received first-line therapy with immunomodulatory agents, which included 123 patients who had received treatment with thalidomide plus dexamethasone and 167 who had received lenalidomide plus dexamethasone prior to SCT. The 173 patients who underwent SCT within 12 months of diagnosis and within two months of stem cell harvest were considered “early” transplant patients; 112 patients who underwent SCT more than a year after diagnosis were considered “delayed” transplant patients. The study, led by Shaji Kumar, MD, was funded in part by the Mayo Clinic Cancer Center’s Hematological Malignancies Program and by a grant from the National Cancer Institute.
At the time the Cancer article was submitted for publication, 42 patients had undergone SCT. The estimated median time to transplantation was 5.3 months in the early group and 44.5 months in the delayed group. The four-year overall survival rate was 73% in both groups (P=0.3). Four-year overall survival also was comparable among those who received thalidomide plus dexamethasone (68% in the early group versus 64% in the delayed group) and those who received lenalidomide plus dexamethasone (82% in the early group versus 86% in the delayed group). In addition, the time to disease progression for the early (20 months) and delayed (16 months) groups did not differ significantly.
The authors concluded that these findings illustrate that multiple myeloma patients “have the option of delaying SCT and continuing with initial therapy if that is their preference.”
If you would like to read more, here’s a LINK back to the article.
I’m not going to debate the advantages and/or disadvantages of waiting to transplant. The point is, waiting shouldn’t hurt a patient’s chances for achieving remission. This should allow a patient and their family to focus on other factors involved with the timing of the procedure.
Doctors may refer to auto transplants as safe and “tolerable.” But it’s still a big deal. I am living with the affects of mine eleven months after I left the hospital.
I will share details about how I am still learning to live with my new, post transplant immune system tomorrow. Let’s just say it isn’t easy!
Feel good and keep smiling! Pat
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