Reality Check: How much longer might new therapies be expected to keep us alive?

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OK.  Let’s get real.  Readers are asking, “How long will access to the new myeloma therapies featured at ASH help me live?

Tricky question.  Answering is like trying to hit a moving target.  Complicating things are combination therapies.  Even after a new myeloma drug is approved, experts still won’t know how combining the new drug with existing therapies might work. Earlier posts about how surprisingly well Kyprolis is working in combination with a number of different drugs is a prime example of this.

It also highlights the difficulties in figuring out what works best.  As we’ve learned from following some maintenance therapies, slowing myeloma down at first doesn’t always translate into improved overall survival (OS) statistics.

Difficult or not, I’m going to try!  There are some consistent numbers to work with.  For example, Onyx’s Kyprolis, Celgene’s pomalidomide and Millennium’s MLN9708 all show a median progression free survival (PFS) benefit of between 8 months and a year.  As single agents, Kyprolis helps around 25% of relapsed, heavily pretreated patients, while pom and 9708′s numbers are a bit higher, between 40-50%.

BUT Kyprolis is already matching or exceeding those numbers when inserted into some combination therapies.  My guess is the same will also apply to the other two.

So…  Let’s play the odds.   If your current combination therapy is failing, and you have become resistant (refractory) to Velcade and/or Revlimid, here is what a reasonable patient might have a right to expect.

Remember, median means one half of patients fall below that number and one half above.  And don’t forget we are comparing PFS numbers, not overall survival stats, because reliable OS stats aren’t readily available yet.  I’ll try and convert PFS to OS in a bit.  So here goes…

I’m going to make the assumption that the relapsed patient I describe above has a 125% chance at least one of them will help; Meaning most patients should respond to at least one of these drugs.  Considering different combinations–and that a patient is working with a specialist that has access to them and is willing to try them all–I’m going to assume that two of the three drugs will show at least some benefit in our make-believe patient.

Sticking with the numbers, we need to concede that although both drugs may work, one of them probably won’t work very long.  So I’m going with one drug works longer than the median PFS and one less.

Based on my shaky and arbitrary assumptions, I believe a heavily pretreated, refractory patient can reasonably expect to live between one and two years longer now that Kyprolis, pom and 9708 are available.

A year and a half doesn’t sound like much, especially when you are THE patient!  But that is a HUGE gain by oncology standards.  And I’m not done.

Combinations.  It’s all about combinations.  Recalculating!  One or more combo therapies should add some additional time.  So let’s add-in an additional six bonus months, bringing our patient’s total PFS up to two years.

Now remember that PFS isn’t overall survival.  But unless something unexpected happens–which can and does in long-lived myeloma patients–our subject isn’t going to die while their cancer is under control.  Which means they should/could live even longer, right?

One reason median numbers aren’t better is patients do die from (but not limited to) pneumonia and other infections, blood clots to the lung, heart and brain, heart attacks and heck, old age.  These unfortunate events drag-down the numbers.  In this case, I would think using median numbers actually favor our patient.  If he or she can stay otherwise healthy–and they make it to the median two years–our test patient could live for for years longer.

Let’s add it all up.  Based on what I just described, two years is a conservative expectation.  It could be a lot more.  Sure beats the current 8-10 months!

Confused?  Depressed?  Never going to read one of my posts again?  Don’t be!

Remember what I said about hitting “a moving target?”  If you can live an additional two+ years, chances are several other new combination drugs will be available by then.  And several of those may help the new drugs  work longer.  Heck, they may even allow a drug that used to work (Velcade and/or Revlimid or Thalomid) come back into play.

Get the idea?

Yes.  At some point our patient’s immune system may not be able to recover and/or their myeloma may mutate into an aggressive type that proves unstoppable.  But like Jim Bond, a well known, long-lived myeloma survivor, our patient may recover from a number of close calls and live 20 or more years, too!

I’m not the first to try and figure all of this out.  As a matter of fact, I believe that most of this is already baked into the stats many oncologists quote a newly diagnosed patient today when they tell them, “You could live a decade or more.”

That said, please remember that we aren’t statistics!   (I think I’ve heard that affirmation here before!)  After all, numbers like these are nothing more than logical guesses, based on what has happened to others in the past, and what someone thinks could happen to you in the future.

All of this is a good reason to follow news about experimental therapies.  One or more of them might just help save your life someday.  You wouldn’t be the first patient to suggest something new to their oncologist and have them look into it and exclaim:  “The numbers look pretty good.  Let’s give it a try!”

Feel good and keep smiling!  Pat

NOTE:  I have corrected math from my original post while conceding that 125% isn’t a real number.  Just a figure of speech – a way to help explain why I think many of us could live several years–or more–thanks to the development of these three new myeloma therapies: Kyprolis (carfilzomib), pomalidomide and MLN9708.

 

My impatience and frustration emerge near end of ASH

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It’s no secret that I become impatient and frustrated from time to time over the slow progress being made by researchers to understand how myeloma cells develop drug resistance.  Here are notes I took at ASH in an oral session late on the last day of the meetings:

Slow progress is being made across the board.  But where is the bombshell?  The magic bullet?

Doesn’t mean these therapies might not help–or it isn’t interesting following all of this.  But I’m tired of hearing about an 8-10 month median PFS and similarly dismal OS numbers once patients become refractory to Rev and Velcade.    Let’s stop messing around and kick this thing’s butt!

OK.  I feel better!  This is interesting.  A Phase I study of lorvotuzumab mertansine (LM) (IMGN901) in combination with Revlimid and dex for high risk patients.

Apparently, CD56+ is expressed on the surface of 78% of myeloma cells, but not healthy plasma cells.  Researchers here say they can now identify patients with CD56+.  The new drug is designed to bind to myeloma cell, allowing Revlimid to work better and myeloma cells to be destroyed more easily.

Heavily pretreated patients had an OS of 56% at the end of the study.  A clinical response was observed in 4 out of 5 Revlimid refractory patients.  Numbers are “bumped-up” a bit,  because there were some patients that hadn’t used Revlimid.

I want to take a step back and define what it means to be refractory to a novel therapy.  I wrote about how difficult it is to define refractory when using living, breathing patients yesterday.  My myeloma specialist, Dr. Melissa Alsina, addressed that with me just before Christmas.  I will share how she–and other myeloma experts–define “refractory”  Tomorrow.  Their thoughts may surprise you.

Feel good and keep smiling!  Pat

 

Hopeful affirmation and refractory myeloma defined

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Before I get started, did you happen to read Danny Parker’s comment yesterday in response to Mark’s hope that myeloma researchers can and will focus more on new ways to attack myeloma cells, instead of ways to make more of the same a bit better?

We need some new classes of drugs that hit different pathways. That’s why the ARRY-520 drug (MEK pathway) may be more important.

Same with the Dana Farber JQ1 effort (bromodomain inhibitor- MYC pathway).

My guess is that the MM magic combo will come from a mix of hit several pathways at once which evades the MM cells’ ability to mutate around it.

That may make a difference in our life expectancy that is not measured in months, but in a decade or more.

Hard to argue with that.  Thanks, guys!

Yesterday I wrote that “I want to take a step back and define what it means to be refractory to a novel therapy.”  I promised to reveal what the word, refractory, should mean to us.  To help me, I had the opportunity to discuss this with my myeloma specialist, Dr. Melissa Alsina.

Like I hope most of you can, my specialist meets with me every two or three months.  But I always take things one step further, asking Dr. Alsina a wide variety of questions that I get from readers or need answered for upcoming projects.

Lost is all of this is what Dr. Alsina had to say about me and my progress.  I will fill-you-in after I return home from watching the Rose Bowl parade and game on Tuesday.

At last week’s appointment, Dr. Alsina surprised me when she specifically addressed what refractory really means.

I had just shared with how I was experiencing an alarming increase in the severity of my peripheral neuropathy at the end of my six week, four weeks on/two weeks off Velcade cycle.

If that continues, Dr. Alsina suggested we substitute Kyprolis for Velcade.  “Carfilzomib (Kyprolis) isn’t FDA approved for use as a maintenance therapy, but I have already had good luck using it with several patients.  And so far, insurance hasn’t been an issue.”  She said.

I responded by reminding her that I didn’t want to stop using an important drug like Velcade as long as it still worked, regardless of the side effects.  “I sat listening to presenters at ASH talk about how being refractory to Revlimid and Velcade leaves relapsed patients with an 8-10 month median overall survival (OS) rate…”

Dr. Alsina stopped me mid-sentence. “You aren’t refractory to Revlimid.”  She said, firmly, and went on to explain that just because someone stops using a drug, doesn’t mean it has stopped working.  She added that those doctors are dealing with patients where nothing works anymore.  And that a patient who is truly refractory to both Revlimid and Velcade has most always developed a form drug resistant disease that rarely responds to anything else.

Here is how the Mayo Clinic website has to say.  If you read between the lines, it provides a lot of insight into this.  I have highlighted a few key points in BOLD:

TREATMENTS FOR RELAPSED OR TREATMENT-RESISTANT MULTIPLE MYELOMA:

Most people who are treated for multiple myeloma eventually experience a relapse of the disease. And in some cases, none of the currently available, first line therapies slow the cancer cells from multiplying. If you experience a relapse of multiple myeloma, your doctor may recommend repeating another course of the treatment that initially helped you. Another option is trying one or more of the other treatments typically used as first line therapy, either alone or in combination.

Remember that relapse does not necessarily mean your myeloma has become drug resistant.  Increasing the dose and/or frequency of the drug or drugs that had been working may stop or slow the relapse.  Going back to drugs that worked in the past may help.  Different combinations could also do the trick.

My autologous stem cell transplant 17 months ago didn’t do much to help, except it seemed to hit a re-set button for Revlimid, which had stopped working following over four years of continuous use.  I will write more about this later, including why Dr. Alsina recommended I drop Revlmid at our appointment.  “But that doesn’t mean it has stopped working.”  She asserted.  “The same with Velcade.  Just because we stop using it doesn’t make you refractory to it.”

Dr. Alsina added that  “You aren’t refractory to either one of these drugs.”  Now that’s reassuring!

Today Pattie and I are preparing for tomorrow’s long, exciting day.  First, up at 5 am to claim our spot on the curb so we have front-row seats for the Rose Bowl Parade.  Then a two mile walk to the game, where our Wisconsin Badgers will face Stanford.

Its a good thing we have been able to rest-up here in San Diego while staying with our old friends, Ed and Michele.  We visited the waterfront and drove out to Coronado Island to eat and shop a bit, but we were back early and have now had two good nights sleep.  We are heading up to L.A. in a few minutes.  Can’t wait!

All reason enough for me to feel good and keep smiling!  Pat

 

Brock's Ice Cream Parlor-Blast From My Past

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Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

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

ARRY-520 and another pomalidomide study

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I haven’t written much about ARRY-520, this year’s rising myeloma star at ASH.

ARRAY Biopharma is developing ARRY-520, a potent, selective KSP inhibitor; its mechanism of action is distinct from other drugs used to treat multiple myeloma.  I have written about it before and featured ARRY-520 a number of times on MyelomaNews.com.

I attended an oral presentation at ASH, involving a two cohort Phase II study of this novel KSP inhibitor.  My notes remind me that patients were very, very heavily pretreated.  Cohort One included the normal range of relapsed, refractory patients.  Patients in cohort Two averaged 10 previous therapies and were 100% refractory to Velcade and Revlimid.

Toxicity levels were very, very good.

Cohort One OS was 16% (no dex) with PR or better.  Average response of 8.6 months.  Cohort Two involved more heavily pre-treated patients.  Also, dexamethasone was added to dosing regimen.  Cohort Two had a 22% PR rate, with a 5.4 months median response rate.

Sounds like another promising complimentary, combo drug.   Like tabalumab,

Interview with Dr. Noopur Raje: new antibody therapy, tabalumab

ARRY-520 adds little toxicity to the mix, and seems to do much more.  My take on ARRY-520 is this drug may be approved some day.  I rate it a step below impressive.

Next, well known myeloma specialist, Sundar Jagannath, presented a Phase II pomalidomide with low dose dex study.  The next generation IMiD, pomalidomide (Actimid) is the drug that marathoner Don Wright has been on for four years.

Patients in the study all had experienced at least two cycles of both Revlimid and Velcade, and they needed to be refractory to their last therapy.  Two thirds of the patients had used Thalomid and/or undergone at least one SCT.

An impressive number of 80% of the patients responded.  Response was fast but didn’t seem to be very durable.  Dr. Jagannath found that adding dex late didn’t help much.  Better to use it up front.

Safety data was just OK.  Neutropenia was common.  Peripheral neuropathy (PN) was not.  13% experienced grade one or two PN.  Aspirin helped prevent clots.

Pomalidomide has enough single agent action to garner fast approval by the FDA.  But like most other myeloma drugs, pom’s numbers soar when used in combination.

Tomorrow I’m going to go out on a very, very long limb to try to interpret how what I learned at ASH might actually help us live longer.

Feel good and keep smiling!  Pat

CANCER BENEFITS IN ONION AND USES

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Cancer Prevention

One way the antioxidants in onions can protect you against cancer is by reducing the DNA damage in cells caused by free radicals, studies reveal.
All onions and onion relatives (garlic, leeks, chives and scallions, or spring onions) are rich in organosulfur compounds shown to help prevent cancer in lab animals.
In fact, an onion extract was found to destroy tumor cells in test tubes and to arrest tumor growth when tumor cells were implanted in rats.
The onion extract was shown to be unusually nontoxic, since a dose as high as forty times that of the dose required to kill the tumor cells had no adverse effect on the host.
In addition, shallots have been shown to exhibit significant activity against leukemia in mice.

 MORE BENEFITS OF ONION

Never mind the tears they bring on—onions are an ace ally in your fight against disease. A prized member of the lily family, they lavish you with health benefits while adding oodles of taste to your food.
A quick glimpse at their incredible health benefits:

• The phytochemicals in onions improve the working of Vitamin C in the body, thus gifting you with improved immunity.
• Onions contain chromium, which assists in regulating blood sugar.
• For centuries, onions have been used to reduce inflammation and heal infections.
• Do you enjoy sliced onions with your food? If yes, rejoice! Raw onion encourages the production of good cholesterol (HDL), thus keeping your heart healthy.
• A powerful compound called quercetin in onions is known to play a significant role in preventing cancer.
• Got bitten by a honeybee? Apply onion juice on the area for immediate relief from the pain and burning sensation.
• Onions scavenge free radicals, thereby reducing your risk of developing gastric ulcers.
• Those bright green tops of green onions are rich in Vitamin A, so do use them often.

My favorite way to enjoy onions is to slice them really thin, squeeze some lemon juice on top and add a little salt. Sprinkling a few freshly washed cilantro leaves adds fragrance and flavor to this simple, quick salad, without which no dinner of mine is complete.

Benefits of neem in cancer - a common tree in india

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Benefitsof neem a common tree in india
margosatree possesses the sheet (cold) virya potency. It contains tickt and kashayarasa, it possesses the laghu (light) gunna (property). Combination of thesemakes neem a unique herb. Due to tickt rasa it suppresses kapha and dueto sheet virya potency it suppresses pitta dosha. Chemically neem containscomplex compounds called triterpenes, limonoids, nonterpenoids,hexanortriterpenoids, and pentattriterpenoids. The most important activeingredient of neem is azadirachitin, which makes neem possess the power, whatit projects in its usage. Every part of the plant is used i.e. flower, leaves,bark, seed, oil, branches and the excludant called neera, which flows out ofthe bark
· Neem act as anti bacterial, anti parasitic, anti fungal, anti protozoaland anti viral thus helps in protection from all the microorganisms, whichare always ready to invade in our body causing serious ailments.

· Local application of neem powder or neem oil has miraculous results. As it isa famous anti microbial herb, it renders all the microorganisms inactivetherefore helping in proper healing of wound without causing any infections andseptic conditions. · Taking bath of neem leaves water is a very common sight inIndian homes that helps our body to counter mild infections, which our bodymight get in day-to-day activity.
· Its tropical application makes us relieved from acne, eczema and evenringworms

· In skin related diseases, neem works as blessing of God on mankind. It has anaction on almost every kind of skin disease thus making its indication ineradicating every kind of itch, rash, infection and allergy.

· Neem water is extensively used in burn injuries, thus to protect them fromany kind of infection and also promote healin. Neem oil is extensivelyused in hair fall and early graying of hairs with very satisfying results. Italso find its application in dandruff and in licegrowth

· Its local application on arthritic conditions like rheumatoid arthritis,gout, Osteoarthritis, lower back pain, and musculo skeletal pains is highlyrecommended with good results .internal action:

· Due to presence of tickt rasa it is beneficial in indigestion, constipationand restoring taste of mouth.

· It helps in fighting with the intestinal worms there by act as a dewormingagent

· It is highly recommended in hyperacidity and epigastric pain as it suppressespitta that is the main culprit in the aggravation of such illness.

· Good results have also been seen in gastritis

· Widely and extensively used as blood purifier as it possess the propertieslike tickt rasa which helps in detoxifying any toxins floating in our bloodstream which may lead to illness.

· It gives wonderful results in diabetes incipidus and diabetes mellitus due topresence of tickt rasa.

· It is very helpful in curing urinary tract infection

· It stimulates liver for proper functioning therefore helps in maintainingproper secretions of liver

· It acts on all kinds of skin disorders and provides great relief.

· It works as an anti inflammatory and pain relieving agent

· It also helps in suppressing extra heat generated in body due to any reasonthus helps in maintaing normal condition in hyperthermia. Very useful insuppressing fever.

· Anti malarial action of neem has also been seen

· Since old times neem leaves have been used as an agent that helps inincreasing vision as it helps in suppressing kapha disorders thus releasingcongestion on eyeballs caused due to mucus accumulation in sinuses.

· Coughing is relieved by use of neem water

· It helps in reducing excess micturation

· It has given very good results in diseases like gonorrhea and syphilis

· It works as an immunoboosting agent therefore making our immune system verystrong and efficient to fight against any foreign invasion making our bodystrong and disease free .
neem leaves and uses
These are opposite and pinnate from medium to dark green in color. Color ofyoung leaves is purplish to reddish. Petioles are short and leaves haveasymmetric shape.

Neem leaves in the form of paste can be directly applied to skin. You can usethe neem leaves for bathing in water. This cures the skin related problems.

Neem leaves are very good in treating chickenpox.

If you are diabetic and will consume neem leaves empty stomach in the morningthen surely you can cure your diabetes.

An inflammation can be subsided with neem leaf paste.

These are great detoxifiers so given to purify blood.

If you suffer from excessive hunger then eat the fine paste neem leaves with brownrice. This is has curative properties.

Drink its juice to cure excessive thirst.

To cure any kind of skin infection mix turmeric with neem leaves paste andapply it on your body for at least three months.

Get a glowingskin by consuming this.

Increase body's natural immunity with neem leaf juice.

If you have pimples on your face then apply the neem leaf decoction.Even this can be used to treat minor wounds as this reduces the chance ofgetting further infection. You can also cure dandruff and hair loss with this.
But neem doesn't promote resistance in bacteria.Antibiotics are over-prescribed and are becoming blunt as a weapon in our fightagainst diseases. Neem is an interesting alternative, and one that will neverstop working.Neem isjust about anti-everything:

• anti-bacterial
• anti-viral
• anti-septic
• anti-diabetic
• anti-fungal
• blood-purifying
• spermicidal

Yes,spermicidal. Neem also shows great promise as a natural meansof birth control. Amazing,isn't it?Oh, and oral care and periodontaldisease is a big one, too. You can't beat neem when it comes to caring foryour teeth and gums.The rangeof diseases that has been traditionally treated with neem, or where research isbeing done, is huge:Aidscancer, malaria, diabetes, hepatitis, duodenal ulcers, kidney disorders, fungalinfections, yeast infections, STDs, all kinds of skin disorders, periodontaldisease, mononucleosis, blood disorders, heart diseases, nerve disorders,allergies... and the list goes on.

Brock's Ice Cream Parlor-Blast From My Past

To contact us Click HERE
Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

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

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

Brock's Ice Cream Parlor-Blast From My Past

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Wednesday, June 25, 2008

Today the Cancer Center seemed to be having some scheduling issues, I think the machine was "down" and needed some repairs.  So after rescheduling us twice we finally made it over there around 3pm.  It screwed up my day a bit with plans to go to the grocery store and make dinner for everyone and so on.  But like many plans that go awry, something cool and wonderful occurs.

Since the day was shot, on our way home we stopped at Brock's Ice Cream parlor in Yuba City.  Long before Baskin Robbins 31 Flavors, for me, there was Brock's Ice Cream.  When we lived at Beale AFB, we would come to town a couple times a year for school shoes and clothes.  It was a BIG DEAL for my sister and I and the best part was always stopping at Brock's for a cone!  I couldn't believe it was still around and except for a small change on the interior to accommodate folks to sit inside, it had not changed a bit.  They make their own ice cream and it is wonderful.  It brought back such wonderful pleasure moments for me - in the midst of the tornado, it was a lovely respite.  Not too mention getting to share a childhood experience with my husband.

When Dan got home, I did manage to get to the grocery store and make some Beef 'n Barley Stew.

If you find yourself going through difficult times, whatever it is, don't underestimate the value of small joys like this.  Its an old story... we take these things for granted.  Well maybe we do, but maybe we are lucky enough to not have a reason to view them in a deeper way.  I don't know... its an interesting and old concept.  But I will say, it had a dual meaning for me.  I used to go there with my father and thinking of him always makes me smile.  Now, here I was, in a little ice cream place sharing it with Dave in the middle of our crisis, and both he and I had a moment, just a moment, of something pleasurable and peaceful, mundane, normal.  I have found that these "little" things really can recharge me and sustain me.  When my mother was dying, at my home, and my life gradually and appropriately got smaller and smaller as her needs got greater and greater, I would sit out on my stoop in the backyard with a cup of coffee on a sunny morning and watch the squirrel antics, the birds at the feeder and the baby fox romping around on their way back to the den.  I found it filled me up somehow and gave me the strength to easily and fully enjoy my mother's company and care for her as she deteriorated.  It can all be such a mishmash really.  But I felt very strongly it was important for me to embrace the small beautiful things in the world - it uplifted me somehow, and that viewpoint was serving me well now with Dave.  It was familiar to me and something to share with Dave.

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

Let's Hear It For Marty And His Cure For Cancer Tour!

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Tomorrow morning we will be all leaving the house early to cheer on Marty Perlmutter who has traveled on a 1,400 bike journey from Jacksonville, Florida to York, Maine.  He is riding to honor his best friend, Roy Gross, who lost his battle with Multiple Myeloma in March, 2012.  Marty has set a goal to raise $20,000 for the Multiple Myeloma Research Foundation.

Marty is staying in Nashua, NH tonight after traveling 100 long hot miles today.  Tomorrow morning my husband Mike will be joining Marty, as he completes his journey to Maine.  Mike was so inspired by Marty and asked if he could join him for a few miles. During the last couple of years, Mike has taken up cycling.  He has participated in several sprint triathlons and charity rides.   After talking with him, Mike convinced himself to ride the 80 plus miles with Marty tomorrow.  This will be Mike's longest ride to date.   I am so overwhelmed with love and pride for my Mikey.  There truly exists nothing that man will not do to support me.  As I sit to write this blog, my eyes are filled with tears.  He is the hardest working man I know, yet he always makes his family a priority in his life.  And now he is going above and beyond riding along with Marty supporting the fight against Multiple Myeloma.  Everyday Mike shows me how determined he is to support me in every way to continue to fight this crappy disease that robs the lives of so many people everyday, like Marty's best friend Roy.  I don't know how I got so lucky that June '92 back in UNH!  Mikey, you are my one and only one and you continue to give me butterflies everyday!


I will be sure to take lots of photos tomorrow.  The kids have packed up our cow bells, pom poms and signs.  We will all be leaving early tomorrow morning to give them a fun send off as they hit the pavement.  Of course, then the kids and I will go home and chill for about 4 hours and we will travel to York to see them get to the finish line at the beautiful Nubble Light in York, Maine!s


If you would like to view Marty's blog please click on the link below:
2012rideforcancer.blogspot.com   

Also Marty's web page for donations is:
www.active.com/donate/2012mmrfYor/MartyCure

I'm In Remission, So What's Wrong?

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I cannot believe how many times I have wanted to sit behind my laptop and write.  This blog began for me as a great way to share with friends and family on my progress, to reach out to those affected by Myeloma, and lastly if I am being completely honest, a free source of therapy for me.  Yet time and time again I seem to find excuses for not writing.  Some days while at the lake with my kids  or while I am out watering my garden, thoughts and sometimes entire blog posts will enter my mind .  Yet, I never take the time to write or type them.  So lately I've questioned myself why I stopped.  And I guess it's because writing for me has always been about being honest and open.  And lately, that is becoming more and more difficult to do.

It easier to get up each day, and stay busy entertaining the kids, running errands, trying to keep up with the garden and lawn (which is pretty pathetic now thanks to the lack of rain), keeping up with my recent obsession with Pinterest and my new found love for restoring furniture, choosing new paint colors for every room in my house, and whatever else I keep my mind busy doing,  than it is to stop and reflect about what is really going on with me.

I feel like lately I am stuck in a temporary in-between stage.   Although I am considered "in remission", I am still on a maintenance regimen consisting of Revlimid and Dexamethasone 3 weeks out of every month, and I have monthly infusions,    My hair is slowly growing out ( I can actually make a tiny ponytail), and I have regained some of the loss muscle and weight back.  To most people I must look healthy and like life is back to normal.  In fact, most people no longer ask how I am doing.  Maybe they are afraid to ask, or just assume that is everything is fine.  Honestly, it feels good to no longer receive the gloom and sad looks I was used to receiving a couple years ago as a sick cancer patient and mother of four young children.

So what's the problem?  I know right?  That is what I keep asking myself.  Well, for those of us who read up on Myeloma daily, we know that this disease is still incurable.  That it really does not go truly in remission.  Up until a few years ago a 3 year life expectancy was the best one would have.  Fortunately with Revimid patients are living longer.  The goal is to keep it at bay for as long as possible with the hopes that when I do relapse, my body will respond to the therapy.  And if it doesn't,  hopefully a new treatment is available. Ultimately, however the Myeloma usually wins the battle.    Daily, I Google Myeloma and read up on every little piece of new news that is published.  Of course what also pops up are far too many obituaries of Myeloma patients who have lost their battle.  I follow many blogs from Myeloma bloggers and although many of their stories inspire me, there are also several that write about their struggles with relapsing.

Although I try not to think about if and when I relapse, it of course enters my mind often especially during the late hours of the night.  So although I am so very blessed to be "in remission", it is challenging at times knowing I have a ticking time bomb inside.

 Running used to help me through some of those challenging moments.  I felt strong running, almost invincible.  Crossing the finish line at The Boston Marathon was so powerful.  I had so many doubts in my mind, even putting aside the extreme of that heat that day. For well over 6 or 7 months I have watch my endurance decrease.  My body screams at me when I have passed the threshold.  Whether it is the long term effects from being on Revlimid or perhaps the disease itself, the bottom line, my body has changed.  Lately I haven't even had the desire to get out there and run, let alone hit the gym.  I know the endorphins I get from exercise help, and that my body needs to stay strong, so why aren't I out there doing it?  At the same time, Mike is training for his first marathon this fall.  This should also motivate me.  But no.  I am crazy proud of him, but I really don't feel the need or desire to join him.  What the hell is wrong with me?

 Sometimes I feel like the days pass and I can't feel passionate about much.    Also as I mentioned, my energy has been pretty low as well.  I know that a lot of that is side effects of the Revlimid and the lack of sleep due to the steroid and just being a busy mom.  But I was desperate for some change.

 A couple of months ago I talked with Dr. H about slowly coming off my anti-depressant.  I had been on a couple different drugs since my diagnosis.  I ended up staying on Effexor which also has an added benefit of helping out with the hot flashes from being put in menapause.  But the past few months I realized more and more that I was beginning to feel like I was going through the motions in life.   I don't ever really feel like I can be really happy or sad for that matter. Also my energy has felt like it has been zapped.  So after reading up on all the different side effects of Effexor, I thought I would try coming off of it and see if I felt any different,

Well the first week pretty much sucked.  My head was in a constant cloud.  I had dizzy spells and felt like my brain was buzzing.  I had a new found respect for anyone going through drug withdrawals.  Day after day I waited for that to subside.  It finally did after about 5 days.  Then it was the tears.  Once the floodgates were opened they just wouldn't stop.    This was right around the same time of Marty's ride that I previously posted.  It was such an inspirational  day.  It was a day full of emotion.  When we got home that night from Maine, my son Mitch knocked at my bedroom door.  He just looked at me with tears in his eyes and told me he was really sad. He said to me "I guess you are one of the few lucky ones who is living".  Gulp!  Yup, you try looking in your 11 year old son's eyes and come up with a quick response to that one.  I just held him and cried and said "Yes I am".

Mike and I were up late that evening on the patio.  Basically him trying to console me.  As always he stayed strong and tried to pick up all the pieces to put me back together again.

From that teary moment there came many many more.  In fact, I couldn't hide the tears from the kids.  It reminded me so much of those first few weeks after I was diagnosed.  One look at the kids and my eyes filled up.  Wow maybe I really didn't need to be thrown into reality?  Maybe it was good to be numb.  Well after a few days of tears, I turned into bitchy mom who had no grip on life.  My poor kids and Mike.  I didn't even get like this when I was on the higher doses of Dex a couple of years ago.

To top it off we were heading to Maine to spend a week with our closest friends and their kids.  There was going to be a total of 28 of us vacationing together for a week (divided in 4 homes).   Although we vacationed together last year and had a blast, the thought of it sent me in complete panic mode.  I have been isolating myself, avoiding big social scenes.  I couldn't handle myself, let along 28 people .

I so much wanted to stay home and just send Mike with the kids.  But deep down inside I told myself that I needed to go.  What would happen if next year I was sick again and couldn't go?  I knew how important it was to Mike and the kids.  I couldn't let them down.  I struggled for a couple of days, and then resorted to calling my doctor and getting back on my anti-depressant.  We went to Maine and had a great week.  The kids had a blast and I did have fun, especially on those fast tube rides.  When I became too overwhelmed I would just tell everyone that I was tired and went to bed early.  I am happy I decided to go, I wished that I could have enjoyed myself even more.  I guess I did the best I could do.

Last week when I was in for my monthly infusion I sat with Dr. H and the nurses and opened up to them.  They are so used to me coming in and seeing happy Jeanie telling them that everything was fine.  Well that day they got an ear full.  My favorite nurse Leslie held my hand, as her eyes filled with tears and told me that she expected this to happen.  She went on to say that some cancer patients go to therapy when they are first diagnosed and work on the mental stuff as well as undergo all their treatment.  Others like me, dive into beating down cancer with all of the chemo treatment and then expel their other energy keeping everything else in their life (ie: kids, house, marriage flowing).  So now comes the mental baggage with being a cancer patient with an incurable cancer.

I had tried therapy when I was first diagnosed, but it really didn't do much for me.  I am not sure if  the therapist was the right fit or what.  Or maybe it just wasn't my time.  I don't view therapy as a sign of weakness.  In fact, I find it to be a sign of strength.  I know I can't carry on keeping myself busy, trying to avoid at all costs any down time.  For me, the only down time I allow myself is at night.  And I know how well that goes for me.  Not!  Hence the insomnia and my nightly dose of Ativan.

So in two days it will be my 42nd birthday. Cheers to me.  A couple of years ago I never thought I would be here today.   I have decided to give myself the gift of me.  That means the good, the bad and the ugly.  It is time for me to finally do the dirty work of digging deep and facing my fears.  This time around, it is not training to complete a marathon, but rather, explore all the hidden crap of fear, sadness and anger.  I am so so tired of this in-between life.  For those of you who know me, but don't want to ask me how I'm doing.  Now you know.  Not so great.  I  struggle with this "new life" of being a survivor everyday.  So please forgive me for putting up a wall around me and not staying in touch.  I miss being engaged in life socially, trust me.  But I guess until you walked in my shoes, you really don't know.  There is no manual on how to get to try to get back that life you once had.  I know that cancer will always be a part of me.  I didn't ask for it, but it's here.  I don't want it to define me, or limit me, more than it has to.  It has sucked way too much out of me physically and emotionally and it is really starting to annoy me.

So stay tuned.  I'm hoping to start shedding a little more light in my life.

For all my Myeloma friends, I usually I take my Revlimid and Dex in the morning.  I held off and took them tonight.  I'm hoping this means I'll be be able to actually get some sleep. We shall see!

Sweet Dreams-
Jeanie