30 Eylül 2012 Pazar

Hoist a Pint

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Thursday, August 23, 2012: 

At the end of the 58th 28-day cycle of the pomalidomide (CC-4047) study, my myeloma markers remain stable. IgG went up 8% to 1180 mg/dL, but M-spike remained constant at 1.0 g/dL (1000 mg/dL). Lambda free light chains increased a little, while kappa chains decreased a bit, but both were well within the range that we have observed in recent cycles on the study. Basically, the measurements are all within their recent envelopes, so there is no change.
Oatmeal underneath

I recently heard from a woman who just lost her husband to myeloma. He and she had done their best, trying every possible therapy before his myeloma finally overwhelmed them all. In celebration of his life, she said "Raise a pint for George."

I have done that. Tonight I've raised another pint to celebrate one more month that my own tiger remains in its cage. If you are inclined to hoist one too, please be my guest.

Most-Recent Test Results:

Test  May 29   Jun 29   Jul 26   Aug 23    Remarks
M-spike g/dL1.11.01.01.0\ Tumor marker no change
IgG mg/dL114099810901180/ Tumor marker up slightly
Lambda mg/dL2.533.112.302.72L free light chains
Calcium mg/dL9.710.29.79.6Great
Creatinine mg/dL1.21.01.11.0Kidney, OK
HGB g/dL15.714.714.514.5Hemoglobin, OK
RBC M/uL4.374.154.054.09Red cells, a little low
WBC K/uL4.64.94.94.3White cells, OK
ANC K/uL1.802.302.201.90Neutrophils, OK

Related Links:

My Myeloma    A discussion of my myeloma, not very technical.
My Treatment HistoryNot technical.
My Test ChartsGraphic displays of several key test results over time.
My Test Result TableSomewhat technical. Best with a wide browser window.
My Supplement RegimenWith links to where I buy them.

59 Cycles, Still Stable

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Thursday, September 20, 2012:

Dr. James Berenson, well-known myeloma doctor, has said that "there is little difference between complete response and stable disease." I believe that, and I'm really quite happy with continued stable disease. I've been in the pomalidomide (CC-4047) study for four and a half years now, 59 cycles, each 28 days. IgG went up 3% from 1180 to 1210 mg/dL, but M-spike remained constant at 1.0 g/dL (1000 mg/dL). Lambda free light chains dropped slightly, while kappa chains increased a bit, but all markers were well within the range that we have observed in recent cycles on the study. Basically, there is no change. It's all good - hoist a pint with me.

Pomalidomide:

Nine years ago, at age 62, my primary doctory called and said "I have made an appointment for you with an oncologist." Fortunately my myeloma was only smoldering then, with no symptoms. Five years later though, after two therapies had failed to halt the cancer's upward climb, a PET scan revealed lesions (holes) in my bones, Stage I disease. A better treatment was needed. Dr. L suggested the trial, 2 mg pomalidomide (CC-4047) daily, with once-weekly dexamethasone (DEX). After the first four cycles, both IgG and M-spike had dropped by more than half, to levels not seen in years, and they continued downward. The DEX was gradually reduced to zero over a year and a half, and M-spike has been stable at about 1.0 to 1.2 g/dL on pomalidomide alone for three years. PET scans and X-rays suggest that the bone lesions are inactive and have probably been repaired.

My family and I attend support group meetings at least once a month, and I know how incredibly lucky I have been, to escape for nine and a half years with no disabling injuries or significant drug side effects. We are still running marathons (see Make It A Masterpiece), almost one a month lately, and have only three states remaining in our quest to run a marathon in each of the 50 states. That has all happened since diagnosis, mostly in the pomalidomide years. By December we hope to run marathons in New Hampshire, New Mexico, and Hawaii, finishing the 50 states.

The credit goes to pomalidomide, of course. I do take very good care of myself, with plenty of excellent food, exercise, and sleep, but those two little milligrams of "pom" are most certainly the key. Not only is pomalidomide keeping me alive and thriving, but it's a very easy therapy to take, just one little pill every day. Life is full and I feel blessed. Not everyone's myeloma responds to pomalidomide as mine has, but it is my miracle drug. Happily, it has been submitted for FDA approval and may be widely available next year.

Most-Recent Test Results:

Test   Jun 29   Jul 26   Aug 23  Sep 20    Remarks
M-spike g/dL1.01.01.01.0\ Tumor marker no change
IgG mg/dL998109011801210/ Tumor marker up slightly
Lambda mg/dL3.112.302.722.61L free light chains
Calcium mg/dL10.29.79.69.7Great
Creatinine mg/dL1.01.11.01.1Kidney, OK
HGB g/dL14.714.514.515.1Hemoglobin, OK
RBC M/uL4.154.054.094.22Red cells, a little low
WBC K/uL4.94.94.33.7White cells, low
ANC K/uL2.302.201.901.70Neutrophils, OK

Related Links:

My Myeloma    A discussion of my myeloma, not very technical.
My Treatment HistoryNot technical.
My Test ChartsGraphic displays of several key test results over time.
My Test Result TableSomewhat technical. Best with a wide browser window.
My Supplement RegimenWith links to where I buy them.

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







29 Eylül 2012 Cumartesi

Is it “all about the money?” Depends how you spin it…

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In case you missed it, the U.S. Food and Drug Administration has set a date for an advisory committee meeting to review the company’s application for approval of pomalidomide:  November 8th of this year.

The agency is expected to make a decision about pomalidomide’s (New trade name, Actimid) application sometime early in February, 2013.

Pomalidomide is an analogue of thalidomide–the next, best member of an oral chemotherapy family that also includes Revlimid.  Like its cousins, pomalidomide is an oral immunomodulatory agent (IMiD™).  It looks very promising–possibly  the best of all the “new” myeloma drugs.  I will keep everyone updated on the new drug’s progress.

Which leads me to this:

“Multiple Myeloma Drug Market Will Reach $9.9 Billion in 2015″ Predicts Visiongain Report

A new report by Visiongain predicts that the world market for multiple myeloma drug sales will reach $9.9 billion in 2015.  That revenue forecast and others appear in World Multiple Myeloma Drug Treatment Market 2012-2022, published in September 2012.  Visiongain is a business information provider based in London, UK.

That’s a lot of CASH!  Is this a big deal?  YOU BET!  The more money involved, the more likely additional companies and start-ups are going to try and get involved.  More money for clinical trials and patient support programs.

Innovation tends to follow the almighty dollar.  That’s one way to spin it.

Now, if we could only do something to help encourage drug companies to be truly innovative.  “New” myeloma drugs?  The next generation of Thalomid/Revlimid?  That’s the best that Celgene can do?  How about  “new” Velcade?  Kyprolis and soon MLN9708?  All proteasome inhibitors.  Where’s the creativity?

None of these drugs are cures.  Not even close.  Too bad that these companies–  the ones expected to gross 10 billion dollars in one year–can’t set aside 10% of that money to do some creative and meaningful research moving forward.

Better yet?  Take 10% of the 10% and spend it on ways to help improve a patient’s quality of life!  Don’t just forget about us and move on.

Investigate new ways that we can all live better while taking one or more of these drugs for decades at a time.  Individualized dosing.  Combining drugs at lower doses in order to achieve the same–or even better–results.  Studying what using these drugs for years at a time really does to our bodies–and then find ways to help minimize the fallout.

A guy can dream, right?

Feel good and keep smiling!  Pat

Acrylamide and Myeloma (Part One)

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Danny Parker is back!  This week, our myeloma nutritional guru focuses on the dangers of acrylamides in our food:

Acrylamide and Myeloma

You haven’t heard from me in a while, and its because of what I have to write about today. I was hoping it would go away. I was hoping that as I dug deeper, it would disappear.  Alas, that’s not the case.

Acrylamide. Just what is that?

If you are a myeloma patient, then it might be useful to find out.  Why?  Because the evidence is accumulating that this chemical substance, found in fried foods, baked goods and roasted coffee (yes, coffee), has been linked statistically with the likelihood of developing multiple myeloma. That might be important for patients in remission or a low level of disease where exposure high levels of acrylamide might trigger unwelcome changes.

The news that acrylamide could be potentially dangerous is not a new finding. In 2002, Swedish researchers found that acrylamide, produced cancer in laboratory animals. They also found that these substances were produced from a variety of carbohydrate rich foods are exposed to high heat. Chemically, acrylamide forms from sugars and the amino acid asparagine when the foods containing them are fried, roasted or baked. It also occurs naturally in some foods we aren’t likely to be eating a lot of: black olives and prunes.

But baked goods and coffee are other matters. Those have been big on my list. Alas…

What is new news is that a major study has shown that the link is particularly strong with the probability of people to develop multiple myeloma. The statistical evidence is pretty compelling. The120,852 men and women followed in a Dutch study by Bongers et al. (2012) showed a 38% – 185% increase in the incidence of myeloma in men from a diet rich in acrylamide. The finding of a 98% average increased risk was statistically significant at the 95% level. That’s major.

http://ecancer.org/publications/latest/22723843

And its not just myeloma. Although severals studies have been inconclusive, one which monitored blood acrylamide levels found evidence of increased risk for women of certain types of breast cancer.

http://onlinelibrary.wiley.com/doi/10.1002/ijc.23359/abstract;jsessionid=BA8B17215F3C8D97309AE2F62FF9700C.d03t01

In 2008, the FDA began advising American consumers on the issue. While they did not recommend dietary changes, they did provide information to consumers seeking to limit their exposure to acrylamide:

http://www.fda.gov/Food/FoodSafety/FoodContaminantsAdulteration/ChemicalContaminants/Acrylamide/ucm053519.htm

To say this news was controversial is to paint it lightly. The problem is that acrylamide is found in foods that are nearly ubiquitous in the American diet. French fries, chips, baked goods. Heck, graham crackers generally have high levels.

http://www.fda.gov/Food/FoodSafety/FoodContaminantsAdulteration/ChemicalContaminants/Acrylamide/ucm053566.htm

Thus, the FDA recommendation was met with disdain. What are they going to leave for us to eat?

Still, the finding that exposure to acrylamide is important to the risk of developing myeloma seems increasingly difficult to ignore. Earlier this summer, one of the pioneers in myeloma research, Dr. Brian Durie, wrote about the importance of the Dutch study.

 http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/2012/07/can-cookies-cause-myeloma.html

He got a lot of flak too.

Still, it seems prudent to address the largest sources of the potential carcinogen: French fries, potato chips, breakfast cereals, cookies, toast, and coffee.

While the FDA does not recommend eliminating such foods from our diet, they’ve come up with suggestions for a few of these items to help reduce the concentrations, particularly for potatoes and bread. (It is worth mentioning that the FDA stance on this issue is evolving in the direction of reducing levels in the American diet).

http://www.gpo.gov/fdsys/pkg/FR-2009-08-26/pdf/E9-20495.pdf).   

For french fries and potato chips, the answer is simple: don’t eat them. Lots of empty calories and fat and acyrlamides to boot.  Just say no.  Even the FDA seems to agree with that.

For potatoes, boiling or heating them in the microwave produces no acrylamide. However, frying leads to very high acrylamide levels. Roasting is not so bad and baking is better. Strangely, storing potatoes in the refrigerator can increase formation of acrylamide during cooking, so its useful to store the potatoes at room temperature.

For bread, if you toast it, toast to a light brown color. FDA has a number of tips.

 http://www.fda.gov/Food/FoodSafety/FoodContaminantsAdulteration/ChemicalContaminants/Acrylamide/ucm151000.htm

Go for light: Lightly toasted vs. dark toast

However, as you will see from the FDA charts below, cookies, cakes and baked goods have high acrylamide levels too. Alas cocoa and chocolate is also on the list.

http://www.fda.gov/food/foodsafety/foodcontaminantsadulteration/chemicalcontaminants/acrylamide/ucm053549.htm  

EDITORS NOTE:  The FDA data and charts are so extensive, I couldn’t reproduce them here.  Click-on the link above and you will find many of your favorite foods, listed by brand.

I think that’s more than enough information to “digest” for today.  Tune-in for part two of what I like to call, “Proof that most every food that you love isn’t good for you!” tomorrow.

It really isn’t that bad!   My take on all of this is that you should avoid processed foods that contain a lot of sugar, are fried and/or are cooked so much that they become crispy and dark.

OK–maybe it is that bad!  Head to the kitchen, grab a handful of radishes and an apple and tune-in tomorrow morning for part two.

Feel good and keep smiling!  Pat

Acryalmides and Myeloma (Part Two)

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Don’t panic!  You don’t have to give-up eating cookies and french fries altogether!  But Danny’s research does validate the “Those things aren’t good for you!” comments that we have all heard over the years.

Yes, we now know that baked goods and potato chips are more than just empty calories.  The acryalmides may actually hurt you–especially if you have multiple myeloma.

Here’s the conclusion of Danny’s expose’:

Acryalmides and Myeloma (Part Two)

In 2004, two FDA researchers, Dr. Michael DiNovi and Dr. Donna Howard, estimated the major sources of acryalmides in the American diet:

http://jifsan.umd.edu/docs/acry2004/acry_2004_dinovihoward.pdf

The top foods in terms of acrylamide per portion were as follows:

Top Seven Foods in Acylamide content

French Fries: 48.8 mcg

Prune Juice: 24.0 mcg

Postum cereal drink: 22.3 mcg

Potato chips: 14.4 mcg

Black olives: 8.2 mcg

Brewed coffee: 3.2 mcg

Of course, not many of us are likely to guzzle down a lot of prune juice and Postum and black olives seem a bit uncommon too.  When the same researchers, looked at the top foods that made up acrylamide intake in the American diet (estimated at 43 mcg/day) by the frequency by which they were eaten, the surprises were fewer:

Percentage of Average Daily American Acrylamide Intake by Food

French Fries: 38%

Breakfast Cereal: 10%

Potato Chips: 10%

Cookies: 8%

Coffee: 7%

Toast: 6%

Baked goods: 4%

Even if we give up fries and chips, as seen above, toasted breakfast cereals are a large part of the American intake. I like them too. The solution there is to choose those without the problem such as oat meal or Muesili. (I’ve grown particularly fond of Seitenbacher Muesili #2 with raspberries).

Coffee is another matter– and one that strikes close to home. You see, I am a real coffee lover. So I am aware that what I am writing here is not likely to be well received. (Heck, I’m not receiving it well either).

For coffee, researchers have not found good methods to reduce acrylamide formation since roasted beans are fundamental to taste before brewing. However, one thing I have learned is that the darkest espresso roasts have 25% lower acrylamide levels. Turns out that the lighter roasts have the highest concentrations with Arabica being lower than Robusta:

http://www.ncbi.nlm.nih.gov/pubmed/17054100

More exact data, come from Italian researchers that have every reason to see a major part of their day ruined if the acrylamide-coffee connection isn’t addressed.

flavorfood.com/acrylamides/coffee/expresso

More than that, a compendium on research on the impact of coffee on cancers and other diseases such as Parkinson’s and Alzheimer’s finds coffee comes out as beneficial rather than detrimental.

http://en.wikipedia.org/wiki/Health_effects_of_coffee

So, I am not willing to give up coffee, but I am interested in being smarter about limiting acrylamide sources in my diet. Okay, french fries and chips are out. Good riddance.

One adjustment has been to substitute black teas for getting some of my caffeine in the day (I like PG Tipps) and limiting myself to a single espresso drink in the morning.

Relative to cookies and baked goods?  Well, that’s painful to contemplate. Maybe I’ll just reduce the number and frequency. Otherwise, I am still going to be enjoying cookies when my daughter bakes them.

Eating what I enjoy is one of the lasting things that brings me happiness and I am not going to let myeloma take that away from me.

You see, we myeloma patients have gotta live too.  Right?

I will run a follow-up summary of Danny’s work next week.  Thanks much, Danny!

Feel good and keep smiling!  Pat

Smoldering myeloma therapy debate

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For those of you that missed it, here is the link to Tuesday’s Myeloma Cure Panel online broadcast:

Gary Peterson hosts Dr. Hari and Cure Talk Panel

 

Dr. Parameswaran Hari was the guest expert on the panel.  Dr. Hari is the Clinical Director of the Adult Bone Marrow Transplant Program and Associate Professor of Medicine, Division of Hematology, and Oncology at the Medical College of Wisconsin.  I was very impressed with his detailed answers to a number of questions, including mine about whether smoldering myeloma patients are taking a risk by participating in clinical trials when they are exposed early to novel therapy agents like Revlimid and Velcade.

I argued that by  starting chemotherapy early,  smoldering patients risk developing myeloma that may become prematurely drug resistant.

I’m concerned that this approach could end-up mimicking maintenance therapy studies, where disease progression is delayed by 20 months or so.  Yet in the end, overall survival isn’t improved much.

But Dr. Hari felt that it is appropriate for smoldering patients to participate, as long as they have been identified in the “high risk” category of patients most likely to develop active disease.  He believes that hitting myeloma early results in the longest sustained remissions–and that the same principle should apply to smoldering patients, too.

In other words, hit the myeloma hard before it has a chance to get established.

Dr. Hari agrees with researchers that believe treating high risk smoldering patients could delay the onset of active myeloma by several years.

This is the same argument used by myeloma specialists that want to transplant right away–that there is a better chance of achieving a long, sustained remission.

Although the last point has been debunked by a number of clinical studies, the “hit smoldering myeloma early to help prevent it from becoming active” theory does  look more promising.

One of the panelists, Kieth Virgin, is a smoldering myeloma patient.  Kieth is a patient of Dr. Barlogie at UAMS in Arkansas, and is participating in the UAMS SWOG120 MGUS trial.

Kieth was the panels “case study,” asking Dr. Hari a number of specific smoldering myeloma related questions.  I am going to share Keith’s story with you next week.

Other topics were covered too, including Dr. Hari’s recommendations for relapsed myeloma patients.

I’m going to be hosting next month’s broadcast.  I would like to shake things up a bit, focusing on one or more controversial topics that aren’t usually given enough time during these types of programs.   I’ve proposed an evening telecast, so working patients and caregivers can listen-in and ask questions, too.  I will update you once a date and time are set.

Feel good and keep smiling!  Pat

 

 

 

 

 

Former Big Ten place-kicker now battling multiple myeloma

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My good friend, Richard, recently passed-along a link to a Sports Illustrated article about a former University of Michigan place-kicker that had been diagnosed with multiple myeloma.

Here are a few excerpts from that lengthy piece:

The do-or-die life of kickers—outsiders in their own game—forges a bond that connects them across generations, and misses

LEE JENKINS – September 10, 2012

Ten years after the kick that changed his life, Phil Brabbs walked onto the patio of a coffee shop last Thursday and took three steps back, two to the left. Moments earlier he’d looked like any other suntanned tourist in Emerald Isle, N.C., checking his e-mail at the Beans-N-Screens Internet Café. Now he was standing over an imaginary left hash mark, in his sandals, reciting Philippians 4:13. It was the verse he chose at Michigan Stadium on Aug. 31, 2002, with five seconds remaining and the Wolverines trailing Washington 29–28. Brabbs was a junior at Ann Arbor who took out student loans because he was not on scholarship. Until that day he had never attempted a field goal in college. Early in the first quarter he missed wide left, and late in the second he missed left again—a snap hook that barely rose more than 10 feet off the ground. At halftime Brabbs was booed by the sellout crowd as he jogged into the locker room, where he sat with his head in his hands. Before the third quarter he missed every one of his warmups, all to the left. Coaches benched Brabbs in favor of his best friend, Troy Nienberg.

With 1:24 left in the fourth quarter, Nienberg pushed a go-ahead 27-yard field goal to the right, and Brabbs told himself, Not only am I going to get lynched, my best friend is going to get lynched with me. But an unfathomable sequence ensued: a Washington three-and-out; a fourth-down pass to Michigan receiver Braylon Edwards that was dropped, ruled a fumble (in the days before replay) and recovered by another Wolverine; and, finally, a too-many-men-on-the-field penalty against the Huskies that set up a 44-yard field goal try. Lloyd Carr didn’t summon Brabbs so much as shove him. “Get out there,” the coach growled. As Brabbs loped onto the field, he looked at the stands and noticed that maybe 10% of the fans had gone. Still, about 100,000 remained. “I was the last guy they wanted to see,” Brabbs says. Michigan receiver Ronald Bellamy grabbed him. “You’ve got this,” he barked…

I felt like I was frozen in time,” says Brabbs, “and then I saw the ball fly between the uprights, and I woke up.” He didn’t know what to do, so he ran, as fast as he could toward midfield until Bellamy caught him and wrestled him down. A hundred teammates leaped on top of them. Bellamy shrieked at the bottom of the dog pile. “I could have died right there,” Brabbs says, “and I’d have died happy…”

Besides the Michigan hard cores, no one heard from Phil Brabbs again. He injured his quad later in the season and tore it in the summer. He made two field goals the rest of his career. He graduated with a degree in engineering, landed a job as an IT project manager and married his girlfriend, Cassie. They had a son, Ocean, and two daughters, Iris and Ruby. They bought a house six blocks from Michigan Stadium. In 2007, while Brabbs was training for a marathon, he felt a pain in his left ankle. Doctors discovered a blood clot in his left leg and, a few months later, another in his right. The day after Brabbs turned 28, he received a diagnosis of multiple myeloma, a cancer of the blood.

He chose the most aggressive treatment: two bone-marrow transplants and seven cycles of chemotherapy. “You’re completely exhausted, lying on your back, and you have a lot of time to think,” Brabbs says. “I’d never really savored the kick—I just sort of stowed it away in my heart—but I started to reflect on it a lot. I tapped into the hope from that game. I asked myself, Why can’t you do it again?”

This spring, tests revealed that Brabbs was free of the myeloma protein…

This is an incredibly long article–the type of writing that the internet allows.  The emphasis is on the crazy, unsettled lives of place kickers, not multiple myeloma.  But Phil does go on to explain how rebounding after missing field goals helped prepare him for the challenges to come.

CLICK HERE  to read more.

Feel good and keep smiling!  Pat

 

28 Eylül 2012 Cuma

10 years later...

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10 years later and I am starting to think…maybe life is moreabout the misses…than the makes.
Like a brilliant diamond, it was the thousands of cuts,that made it so magnificent. It’s the refinement process that produces beauty.
ESPN’s top play of the week referred by many Michigan fansas simply “The Kick”, contains more than a singular kick. Actually, there wereplural “kicks” in the game that led up to the one that most remember.
I still recall folks telling me after the game that oneday people will forget the misses, and only recount how they felt as “The Kick”from 44 yards out, with ESPN College Game Day nearby, split the uprights togive Michigan a two point advantage as time expired in front of 110,000screaming fans.
I still have the ESPN sport center game review and I find asmuch meaning in The Kick, as I do in what I will dub “The Misses”…and a coupleof them being big misses.
The first miss came in the first quarter. The Wolverines hadbroken out into an early lead thanks to the legs of Chris Perry. On 4thdown I was called in to attempt an average field goal attempt of 37 yards. Goodsnap, good hold, wind at my back…but wide left. Directly into the studentsection.  I was a little stumped bythe outcome because I thought I made good contact, but during film review thenext day revealed that I brought my head up to soon which caused me to hook thekick.
The second miss, well….the term wide left doesn’t do itjustice. ESPN Sport Center commentators referred to it as a “wounded duck.” Atthat point, fans would rather have put stock in seeing their first ever flying pig before theysaw me kick a pig skin through any uprights.
Well, after recovering in the locker room after a shameful and down right ugly start to my career as a placekicker at the winningest college football programin history, my fate was looking gloom, quite contrary to the hot, bright sunnyday that was Ann Arbor that day.
Warming up before the start of the second half resulted ineven more embarrassment as every kick continued to go wide left, but this timeeach one soaring into the hands of a 19 or 20 something kid that shared thatsame title as “student” as me. They were my peers, but they were not forgivingof my performance. They began to boo as I had a difficult time kicking the ballstraight.
Wisely and maybe a little influenced by the booing fans, myspecial teams coach decided to bench me for the second half and go with myback-up and best friend to see if luck in the kicking game could change. Hetoo, was also very unproven and had never attempted a kick in the big houseduring a game.
After scoring a touchdown in the third, his first ever extra pointsoared through the center of the uprights, which brought a roar from the crowd thatalmost equaled the sounds you hear as a player when you run out of the tunnelto jump and touch the banner.
The fans were rallying around the new found hope in anotherkicker, and my stock fell lower than what was experienced by the Big 3 a fewyears back.  I was down and out,and if it wasn’t for my powerful leg on kickoffs, my career at Michigan mayhave been short lived, described by a couple of missed kicks, one that mostfans could have out performed.
Well, as the game went on the two missed field goals (6points) started to feel a little more painful as Washington kept the game closeand even took the lead at different points. With several minutes left,Washington scored a touchdown to take the lead, 29 to 28.  At that point, most fans were probablystrategizing their plan to lynch, tar and feather me. Hmmm…should we nab himbefore he goes into the locker room or grab him on his way out.
Fortunately for the fans, John Navarre and Chris Perry wereon fire that day and led the team back down the field with 1:27 remaining onthe clock. With a failed third down attempt, it would come down to a kick from27 yards out.  Nothing more than achip shot for a kicker who had been perfect on extra points. This only being 7yards further, didn’t seem to present many problems.
The kick did not sail wide left, rather, it just missed wideright.  The fans were in uttershock. If there was any reprieve for me after that miss, it was the simple factthat I was no longer going to haveto fear the headlines in Ann Arbor News kicker lynched….because at this pointmy best friend and one time back up kicker was going down with me.
With little time remaining and no kicker who can make afield goal, the only hope found in that stadium was in the word…hope-less. TheWolverines took the field on defense to grind out the remaining seconds, withthe only thing going for Michigan was the three timeouts they had left. AWashington first down at this point, would end the game, and solidify the kicker(s) lynching.
With a stop on the first play and a quick timeout, there mayhave been some fans who started to walk a little slower as they tried to be the first escape the mass exodus from the Big House; trying to beat traffec on main and state street on their way to I94 or US23.
If there was any hope in moving the ball with no timeouts itdissipated quickly as John Navarre had difficultly finding a receiver. With 9seconds left, some fans started kicking themselves for not leaving earlier.
Washington, wanting to make sure they were perfectlyprepared for any last second heroics called their final timeout to put in justthe right package to ensure a victory over the #10 Wolverines, for the secondyear in a row.
Their package worked perfectly as John Navarre overthreweveryone, including the 12 Washington defenders that were on the field. Withfive ticks remaining on the clock the official picked up a yellow flagsignaling this grave error by Washington, and eventually announcing that 12 Huskies were on the field, one too many...all of this following their timeout, of all things.
The official marched the field a full 15 yards closer to theuprights, the ones that were in throwing distance by half the student body. Thedistance from the uprights was set at 44 yards, left hash. It was still no easy kick, especially by two kickers who still hadn't made a career field goal in three earlier attempts that day.
With not enough time to do eeny-meeny-miney-moe, Coach Carrhad no choice but to call #34 (Phil Brabbs) into the game because he had astronger leg, which gave a slight advantage for him over the guy who justmissed the last kick.
Although the Big House had been witness to many collegefootball games for decades, it had never been home to a game winning lastsecond field goal, oddly enough. There was a shot at it this day, but the oddswere more in favor of a former soccer player randomly picked from the student body making thiskick than anyone sporting a winged helmet from the sidelines. 
So at a moments notice, Coach Carr told me to get into thegame and attempt a kick that could redeem both kickers for the day.  I took my steps back and to the left, recited Phil 4:13 as I always would do,motioned to Navarre to take the snap, and then headed toward what would end upbeing my most defining moment as an athlete in the thousands of hours of competition I had totalled...and this play would only last 5 seconds. Talk about pressure.
That kick was up and extended over two Huskies defenders thatwere reaching for the sun, and as I looked up, I saw the ball sailing perfectlythrough the uprights (watch it here). All of a sudden time seemed to stop. I couldn’t hear athing, probably because the stadium feared an inevitable outcome of a fourthmissed field go attempt by the guy who botched two in the first half.
Then, as both refs motioned that the field goal was good, Ientered back into reality, probably when my 6'6" QB and holder started to grab and shake me like a rag doll. The reality that something big hit us both and every fan in that stadium at the exact moment, and I (or my right foot) was part of it. I knew instantly that this wasn’t just my first career fieldgoal, but this was something that was going to be imprinted on MichiganFootball history for years to come, just like the game announcers had commented.
After being pulled from the bottom of a 100+ person pile on at the center of the Big House, which I would have been content with being my final resting place during that moment, I was found smiling and screaming with joy. The picture to the right shows just how charged I was in that moment. 

After my rescue from the bottom of the pile, I was instantly swarmed by the press. I recall the media shoving all their microphones towards my face as if I had the solution for world peace on the tip of my tongue and I was about to share it to the whole world. As most of the team returned to the locker room to sing The Victors, which is a great Michigan football tradition, I needed to be rescued. So none other than D-line coach Brady Hoke came to my side to pull me through the barrage of press. To this day both of us have the photo the right on our office desk. 
Well years have come, a full decade worth to be exact.  That play was determined to be with ofthe top 20 in the Big House. So yes, it indeed was a very big moment. For me,it gave me hope in the impossible. It taught me that in what can be yourweakest moment, hope can ride you through the dark night and carry you through.That you can go from goat to hero in this world in a moments notice. That youneed to remain positive when surrounded my negativity.  That those closest to you: your teammates,family, friends, will be there when you are in the middle of the improbablefate that looks to lead to know where but devastation.
But in this entire game experience that led to The Kick, Iam now thankful for the misses, because to this day, they are helping guide methrough some of life’s toughest challenges. Yeah, football is just a game andthose were just a couple of kicks, but the emotions I experienced were real andit was on a stage were millions were glued to the outcome.

Let’s raise our glasses to the many misses we have in life,whether missed field goals, snaps that got away from you or an occasionalbotched hold. Those dark moments may just be the predecessor of a really great moment. So hold on, keep the faith, remain hopeful and expect the impossible.
God Bless and Go Blue!!! (10 years later)
-Phil
P.S. #BeatBama

Myeloma Mondays #47: Mark from West Orange, NJ (dx at age 19!)

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Hi, my name is Mark Barnas and I am almost 7 year survivor of Multiple Myeloma from West Orange, NJ. Heres my story!



















Where were you born and raised?
  • Born and raised in West Orange, New Jersey
Where do you currently live?
  • West Orange, New Jersey
When were you diagnosed and how old were you?
  • Official Date of diagnosis was January 25, 2007 ( 19 years old!! ) 
Did you know what MM was prior to diagnosis?
  • Not a clue! Never had heard of it!
Is there anyone else your in family with MM?
  • No one in my family has ever had nor had heard of Multiple Myeloma before 
What led to your diagnosis?
  • Plasmacytoma found by my girlfriend Gina on my right second rib. 
How many times were you referred before actually being diagnosed?
  • Once.  Originally my thoracic surgeon put it at 70-30% of it being a benign tumor based on CAT scan results.  However, doctor advised to have tumor removed and biopsied during surgery.  My first out of 3 surgeries within 7 months during my sophomore year of college was the Rib Resection (Jan '07).  Tumor was biopsied on the spot and was determined to be Multiple Myeloma.  Woke up in intensive care to doctor advising me that it was MM.  Second surgery was a Chest Wall Reconstruction (Mar '07), alloderm mesh was inserted into void that was created by removing rib (surgery was a complete failure).  It was determined after that surgery failed that I would need a 2nd Chest Wall Reconstruction and 3rd surgery overall (Aug '07).  Doctor inserted large piece of gore-tex into void and surgery was successful and I regained most use of my right arm due to surgeons ingenuity in not having to cut my Pectoral muscle at all and overall luck. Then oncologist advised me to have 15 radiation treatments to get whatever the thoracic surgeon had missed.
  • I went over 6 years without any other treatment because my M-spike went from 2 in Jan '07 to about 5.5 in Apr '12 with no CRAB symptoms other than rising Mspike.  I had preventative pet scan in Sept '11 and they found a couple lyctic lesions on my hip.  I had a BMB in Apr '12 which it came back at 75% myeloma cells and it was then determined that i had to start treatment right away.  However with low risk disease no need to do transplant right away.  
Where have you received treatment?
  • St. Barnabas Hospital, Livingston, NJ
  • St. Vincents Hospital, New York, NY
  • Mt. Sinai Hospital, New York, NY
Explain your treatment history:
  • Jan, Mar, Aug '07 - 3 separate surgeries 
  • Aug, 2007: 15 radiation treatments
  • May 1, 2012: Started RVD
  • Sept 6, 2012: Completed 6 cycles of RVD (about to be complete remission)
  • Late Sept, 2012: Stem Cell Harvest Planned for possible Auto-SCT within next couple months or go on Maintenance Revlimid Therapy.  BIG DECISIONS COMING SOON!!! ;) 
Why did you or your doctor choose a specific treatment?
  • Dr. Jagannath is a big believer in not going straight for the transplant and that we could use alternative maintenance therapies to lengthen my life and keep the quality of life at a high level.  I truly believe that I might be able to to avoid having a transplant within the next couple months from today and could postpone it a few more years but I know eventually I will have to have it and go through it regardless.  I am mostly scarred of the unknown since I am so young and there is no set way to treat MM.
What has been the side effects of the different treatments?
  • Surprisingly, I have had no side effects what so ever with RVD except weight gain (which I actually enjoyed) and lack of sleep from Dex.
What has been the hardest thing about your MM journey?
  • Being diagnosed at 19 and not having a clue what I was getting myself into.  Going to college while all this was going on was no easy feat.  One day I was raging with no care in the world and then the next day my whole world was turned upside down.  Most of my friends were there to support me and luckily my doctor in NYC was close to my college so I was able to go to school while going to get surgeries and treatment.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
  • As my dad always said since I was diagnosed "Mark, the sun will always come up tomorrow and you should enjoy every sunrise."  "You cannot control the uncontrollable so why try" 
How have you been able to stay positive and encouraged in your MM journey?
  • I truly believe that they will find a cure for our disease soon,  The support from my family and friends have allowed me to not focus on the vast ups and downs but on the bright side of living life to the fullest regardless of the ride.  I know that we will all live long and prosperous life no matter the length of time here on earth.
After being diagnosed... What perspective was changed the most?
  • Learning to enjoy EVERY moment and that this disease while it created havoc in my life, has brought me so much closer to my family, friends, and my girlfriend of almost 9 years.  She was there for me from the beginning and the entire time since and to this day is there to support me mentally and physically.  She is the rock in my life and has climbed mountains during this journey.  Her positive outlooks on life along with my families allow me to see beyond the bullsh*t we have to deal with on an almost day to day basis with MM and look at the larger picture.  Life is a long journey and we should all enjoy the RIDE!  Stay Positive!!!!  Do not take anything no matter how small for granted! 
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
  • No
What MM sites or blogs had you found good information from after diagnosis?
  • MMfordummies
  • Stupid Cancer