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June 2012 Archives : Myeloma Voices

Looking for the Cure

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Miss the teleconference last night, or want to share it with a friend? The replay is now available at the IMF website! t.co/pPDBO1LE

Looking for the Cure

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Just finished up the teleconference on updates from EHA, ASCO and the IMWG Summit. Were you on the call? What did you think?

One of the Greatest Gifts I Have Ever Received


By Kelly Cox

At the IMF, I run the Regional Community Workshop program and serve as a Regional Director of Support Groups. I frequently find myself travelling to patient and medical meetings across the country. My aim is to bring the IMF's mission directly to those affected by myeloma, as well as to the healthcare professionals who serve them.

In June 2011, I was attending the annual meeting of the American Society of Clinical Oncology (ASCO) in Chicago, Illinois. While taking a short break from the IMF booth, I found myself walking the aisles of the convention hall. One of the booths I passed had no visitors, so I stopped to say a neighborly hello.

The DKMS Americas (dkmsamericas.org) representatives were at ASCO to promote their cause and to solicit potential bone marrow donors. The process was simple. A painless swab of the inside of my cheek and I was on my way to becoming part of DKMS's database. I didn't give it a second thought. I practically forgot this ever happened.

In August 2011, I received a call from the New York offices of DKMS. It seemed that I was a possible match for a woman in her early 20s who needed a transplant for acute aplastic anemia. The sample collected from me at ASCO matched all the preliminary selection criteria. Even at that point in time, the whole concept of being a donor remained pretty abstract for me.

Things started becoming a bit more "real" over the following 4-5 days when I started donating vials of blood for the next stage of the matching process. In total, 21 vials of my blood were collected at a local Los Angeles clinic. The next step could not take place in LA, so it was time for me to fly to the Alta Bates Medical Center in Berkeley, CA.

They were so nice to me. They took great care of me and my wife, Mary. My niece and Mary's best friend were with us for support. The day before the collection procedure, we walked around the Berkeley campus, had a sandwich and some gelato. It was a beautiful, sunny day. I felt so happy and so excited in anticipation of the next morning. I stayed up most of that night because I was too energized and giddy to go to sleep. The mere thought of what was to come gave me goose bumps.

At 7 a.m., as I was waking up from the anesthesia, my bone marrow was already aboard a plane heading for an unnamed destination on the East Coast where the recipient was waiting. 176 punctures in my back and pelvic bones yielded 1.5 liters of bone marrow, more than enough for the recipient's transplant. As I lay in the hospital bed recovering from the bone marrow "taps," watching the two pints of blood I had "banked" being re-infused into me, the magnitude of the experience began to sink in.

Now let me back up for a moment. I must confess that I read none of the materials given to me in preparation for the collection procedure. I just didn't want to know what I was getting myself into. In hindsight, maybe this was because I did not want to learn something that might have discouraged me from moving forward. I felt fully committed and I wanted nothing to stand in the way.

The only question I remember asking in advance was addressed to Dr. Morie A. Gertz of the Mayo Clinic in Rochester, MN.  Dr. Gertz is a member of the IMF's Scientific Advisory Board, a frequent faculty presenter at the IMF's patient education meetings, and an all-round great guy. He told me that a patient with acute aplastic anemia had a 95% chance of survival after a well-matched donor transplant. That was all I needed to hear.

Being a donor is a personal choice. While I certainly appreciated all the support I received from friends and family members throughout the process, I did not expect the outpouring of positive messages I received via my Facebook page, many of them from strangers or from people I had lost touch with over the years.

Oddly, the emotional impact of the entire experience hits home now, after the fact, more than it did before or during the donation process. I get choked up when I think of it and, especially, when I think of that young woman. I hope that the transplant was successful and that it has given her a fresh start. I catch myself wishing that she has a full and productive life and, whenever she is up for it, I hope that she will find a way to be of service to someone else who is in need of help.

The donation was anonymous. While I would love to meet my recipient, there is no telling if this will ever happen. In the meantime, I would want her to know a few things about me. I am 53 years old and I have spent most of my life trying to be of service, trying to make this world a better place. I work for a wonderful non-profit organization, alongside colleagues who spend each and every day making the lives of others better and healthier. I have a newfound empathy and admiration for the myeloma patients I work with who undergo transplantation as part of their cancer therapy.

I've been told I have a big heart and I really do I care about helping people. I feel honored and grateful to have had an opportunity to be a donor. If she ever needs it, I will be here for the same recipient again in the future. And I have gone on to donate blood and platelets through two additional organizations in hopes of helping more people.

Emotionally, spiritually, and intellectually I am absolutely blown away by the experience. And I am still struggling to wrap my mind around the concept of possibly saving a life. Without a doubt, this was one of the most important events and accomplishments of my life.

Carfilzomib at the ODAC Hearing


By Jim Omel, MD

All of us with myeloma were thrilled to get a resounding 11-0-1 vote in favor of carfilzomib at the FDA's Oncologic Drugs Advisory Committee (ODAC) meeting on Wednesday, June 20.  Prior to the meeting, the general mood was neutral at best for carfilzomib's chances, and many financial analysts even predicted a negative outcome.  The FDA had identified significant cardiac, pulmonary, and liver toxicities with the drug and clearly stated their doubts about carfilzomib's Risk-Benefit ratio in their briefing document.

When the FDA has strong sentiment for a new drug's approval they say so.  When they have doubts however, the agency calls in a panel of outside experts for advice.  ODAC is a standing FDA committee of 13 oncologists and biostatisticians, very few of which treat myeloma patients.  For every new drug application with an identified cancer indication, the committee also selects a patient representative (PR) with that specific cancer to join the committee for that meeting.  The FDA PR program involves about 125 individuals with a huge spectrum of first-hand disease experience.  There are two to three of us with myeloma who are PRs, and I was the one selected to represent our disease last Wednesday.

The meeting began with a presentation by Onyx Pharmaceuticals of their phase II trial results for relapsed and refractory myeloma patients and FDA official's enumeration of their significant concerns.  Committee members then asked pointed questions of the sponsor (Onyx), the tone of which sounded very negative.  Most of us in the room frankly had a sense that the drug would not be approved based on the sharp tenor and tone of the questions.  I badly wanted to comment on the drug's good qualities, but strict committee protocol only allowed sponsor questions at that point.

Following a scheduled break, nine members of the public were each allowed three minutes to comment on the value (or not) of the drug.  People from the DC area, the MMRF, and the IMF truly ruled the day and gave new breath to carfilzomib. From the IMF, Michael and Robin Tuohy and Diane Moran made exceptionally eloquent statements. The committee of breast cancer, prostate cancer, and childhood cancer experts saw firsthand that myeloma is NOT a disease of old peopleand other "typicals" they had been taught in residency.  From my vantage point at the table I watched them INTENTLY listen to all 9 speakers.  No one surreptitiously checked their cell phones, fidgeted with their ties, or yawned as if to say, "I've heard these meaningless anecdotal testimonials before."  They were mesmerized!

The formal meeting schedule finally allowed comments from panel members.  I quickly got the chairman's eye and indicated my desire to speak.  As he jotted my name I prepared my thoughts and waited my turn.  I used Dr. Durie's words and said that myeloma is "a sneaky disease."  When it appears to be stopped, its genetic expression changes and myeloma cells escape death (apoptosis) by utilizing metabolic "escape pathways."  Myeloma physicians need multiple drugs (like carfilzomib) to block multiple pathways to control this cancer.  Though carfilzomib will not cure myeloma, it will buy precious time to stay alive until research finally gives us a cure.  I made other comments which countered a panelist's earlier assertion that "only the best patients were pre-selected by this phase II trial by living 5 years."  I reminded him that many of us now live 5 years because of treatments developed since 2000.  I also pointed out that 85% of myeloma patients present with "standard risk" genetic profiles and 15% are classified as "high risk."  In the Onyx trial, fully 28% of the patients had high-risk cytogenetics.

Discussion around the table had a decidedly different tone after the 9 powerful public speakers, and I had great hope for a vote of approval.  Topics centered on the fact that various toxicities identified by the FDA would be expected in the heavily pre-treated patients of this trial.  When the time came we all cast our electric votes, and no one had access to anyone else's vote.   At last the tally appeared on the screen.  There it was:  11,0,1.  The one abstention was cast by a biostatistician who explained that he opposed trial design, not the drug.

A few of us shared broad smiles and later tight hugs.  The ODAC is only an advisory body and the FDA will make its own decision on approval or not.  By law (PDUFA) this decision must come by July 27 of this year.  I think the resounding 11-0 vote will heavily influence approval.  

Following the meeting, the FDA's official who organizes the PR program told me she "nearly cried" when the vote tally flashed on the screen and she considered the relief which all of us with myeloma felt.  Deb is a wonderful government official with warm humanity and empathy.

Next up is pomalidomide, an immunomodulatory drug (IMiD) with proven clinical activity in patients NOT responding to Revlimid� (lenalidomide).  It too is at the FDA right now awaiting approval based on a phase II trial.  A decision is not expected until late 2012 or early 2013.  I hope pomalidomide is so impressive that an ODAC evaluation will not even be necessary.  If it is however, bring it on!  Either I or another capable myeloma PR will gladly represent those of us with this horrible insidious cancer again.  With the IMF's help we WILL find a cure!


Looking for the Cure

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Join me Thurs at 4pm PDT for a free 60-min teleconference on #myeloma updates from ASCO, EHA and the IMWG Summit. t.co/aF37v9Ef

Myeloma Caregiver Wife Blog: Stories

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Sooner or later, everyone is a wounded storyteller.
- Arthur Frank

On a Friday night last fall, several of us from the Portland Myeloma Support Group went to the Newmark Theatre here in Portland to hear Siddhartha Mukherjee give a lecture on his book "Emperor of All Maladies-- A Biography of Cancer," which recently won him a Pulitzer Prize. He talked about his book being a biography in which the main character, Cancer, is not featured, but reflected in people's stories illustrating their experience of it. Some of the coincidences and connections he talked about were haunting.

After the lecture, my husband Alan was approached by a coworker from a job he had over ten years ago. I split off and talked to his ex-coworker's wife, while they caught up. I really liked her. Our conversation was strange because it was apparent that we were both caregivers on a cancer journey, but couldn't talk about it until we knew that our husbands were sharing the same story. Our hesitation seemed to be tied directly to the lecture we'd just heard-- it's not "if" but "when" your life is going to be touched by cancer. And our very real connection didn't address directly the cancers that colored everything in both of our lives.

That Friday had been great day because, for the first time in weeks, Alan had been able to eat three meals without suffering from G.I. issues. It was fun to be out with our gang. It felt like a 'normal' date night- a better-than-normal date night!  However, by the middle of the night, Alan was violently shaking with a fever. I covered him in blankets, called the clinic, gave him a Biaxin, and began reading to him out of a book I checked out of the library, called "The Mythic Journey." The chapter I started reading to help calm the shaking was on 'Separation, Loss and Suffering', and was represented by the Biblical story of Job's Trials.

It's a very different story when you are reading it to your husband who has been living with a disheartening cancer diagnosis for six years, who is shaking with fever, whose feet are bleeding and who is struggling with G.I. problems at three in the morning. But its message about accepting the hand you have been dealt, and not looking for something to be 'fair' was the right story for both of us. I am still amazed that it was the one I picked up. Thankfully, by early morning, the fever was on the way down, and Alan was sleeping soundly.

Much of what has resulted from this myeloma diagnosis has been both bonding and isolating, though not usually packed together so closely. As one of my friends, who is also on a cancer journey, said, "One thing about troubled times, and 3:00 a.m.-- it just doesn't get any more real than this. Real, vivid, fully awake and aware." And that is atonement. 

Be well,

P.S. I have a friend who is a myeloma caregiver wife, whose husband is on 'day twenty' of an allo stem cell transplant. It will be his third transplant, and the process has been challenging and unusual enough that I ought to recruit her to write a 'guest caregiver blog.' They still have 70 more days of living away from home. I want to send them a list of movies with a theme about "beating the odds," and I would like help from you, fellow travelers -- Do you have a movie title that you think would uplift and entertain?  
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Looking for the Cure

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Live streaming right now from the EHA Media Workshop: t.co/R6WJRXOA

Last week I shared some hard-earned advice about how to deal with side effects caused by a variety of myeloma therapies.

My recommendations were broad and general. I hope they helped.

But I promised to share some more specific tips this week. What about the day-to-day side effects that many of us face once we begin myeloma therapy?

Inconvenient things like too much stomach acid, nausea, constipation and any number of significant side effects caused by the drug that we all love to hate: dexamethasone.

Speaking of that particular emotion, don't you hate when you begin reading an article touting ways to help you resolve any number of medically related issues, only to learn that it was so basic that it was a waste of time reading it? I don't want that to happen here!

So let's turn this topic into a multi-week discussion, shall we? That way we can really tackle some specifics.

This week I will cover complications from too much stomach acid. Next week nausea, followed by constipation and last but certainly not least, dexamethasone-related side effects.

Following my autologous (using my own cells) stem-cell transplant, I battled a long list of side effects for months: Fatigue, low -blood counts and nausea, to name just a few. But the longest lasting of these was excess stomach acid. 

Commonly a problem for a month or so while one's digestive system gets back on track following a stem cell transplant (SCT), mine persists today, 11 months later.

Although it wasn't ever diagnosed by a specialist, it is likely I suffered from auto graft/host disease. I didn't even know graft/host was an issue in auto patients.  But the most common area of concern for auto host/graft is the digestive tract, so my myeloma specialist feels it is likely that may have affected me.

For months I could hear and feel acid jetting out of control into my unprotected stomach. Not fun!

My doctors recommended I take Prilosec OTC--or a generic equivalent such as omeprazole magnesium--along with an over-the-counter antacid like Maalox.

A fellow transplant patient recommended the prescription drug, pantoprazole, which he felt was much stronger and worked miracles for him.

For some reason, my doctors weren't anxious to prescribe pantoprazole. I finally ended-up using omeprazole magnesium capsules because they were inexpensive and considered relatively safe. As a matter of fact, both my myeloma specialist and medical oncologist told me I could take it twice a day--morning and night--and at twice the recommended dose on the box.

Check with your doctor, but the twice-a-day approach helped get my acid rush under control. I still use omeprazole magnesium once each morning, a real life saver!

Another patient friend recommended taking a calcium supplement throughout the day. Another felt ginger helped her.

This topic quickly crosses over to include what I call a sour stomach and/or nausea. And these common side effects aren't reserved for those of us who have undergone a SCT. Dexamethasone can really mess with one's stomach, for example. So can VELCADE�.  Really? You probably have never noticed, since it is standard medical practice to include an anti-nausea drug in the same IV.

Since I would like to cover those issues in detail, let's continue our discussion about ways to improve treatment-related sour stomach and nausea next week.

Until then, feel good and keep smiling! 


Looking for the Cure

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Missed the live feed of the IMWG Conference earlier today? Watch it now: t.co/mLpojTDZ

Looking for the Cure

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IMWG Conference Series goes live in 15 hours - sign up to view the live webcast: t.co/E8pjqmuK
As a five-year multiple myeloma survivor, I have come to realize that most of my life will be spent taking what I call "perpetual chemotherapy."

Researchers and drug companies call this "maintenance therapy." But I like the term perpetual chemotherapy better, because it can include induction, consolidation and whatever else our docs want to calls the pills and infusions that we are forced to take in order to stay alive.

And I'm OK with that. Better than the alternative, right?

But it doesn't get any easier the longer we stick around. Most myeloma specialists agree that it's too risky to take extended drug holidays once a patient has relapsed (me!). The good news is that when I combine my personal therapy do's and don'ts with other tips I've gotten from reader comments and emails, I have banked a wealth of knowledge on how to minimize chemotherapy and radiation side effects.

So what do you say I open my "vault" and share some of these tips with you today?

  • Try to schedule your doctor's visits and infusions at the same time and on the same day. For example, I have a standing appointment at my local oncology center on Wednesdays at 3 p.m. I get my blood levels checked, and four out of every six weeks, a Velcade sub-q shot. I also get hooked up for a monthly Aredia infusion and see my medical oncologist as needed.

    But that's only the start. Wednesday evening I take my 10-mg Revlimid capsule, then 40 -mg dex right before I go to bed. That way I still get a good night's sleep, putting-off insomnia until the next few nights.

    By taking my meds on the same time and same day, I'm able to anticipate how I will feel over the next three days. I'm also convinced that my body adjusts to my schedule, too.

  • I have developed some pretty serious peripheral neuropathy (PN) over five years. My guess is some of you have, too. If so, you may already be using Neurontin (trade name gabapentin) to help minimize your symptoms.

    Here's an insider's tip for those of us who use gabapentin. A good friend and researcher who works with the drug shared how important it is to not take your capsules all at once--or even just in the morning and at night. "Add a capsule or two mid-day," he recommended.

    What a difference! I understand that gabapentin doesn't work for everyone with PN. But part of the problem may be that you aren't taking enough, or that your dosing schedule is off. Experiment a bit and hopefully you will be as surprised as I was about what a difference it can make.

  • Exercise. You have got to exercise! Walk daily. Take your wheelchair out to the corner and back. Swim, lift light weights. JUST MOVE! Regular exercise can really help your appetite and energy level. DO IT! PLEASE!

  • Don't put off other medical procedures just because you have multiple myeloma. I should follow my own advice! I need my right hip replaced due to several large lesions in the area and some serious acute arthritis that has developed in the joint. It accounts for more than half of the pain I experience when I exercise, shop or just try to move about the house. Don't make the same mistake!

  • Ask your nurses for help! I have found working closely with oncology nurses can assist you in a number of ways. They can give you tips to help manage side effects directly, as well as having your doctor's ear when it comes time to use drugs to help.

  • Try to remember why you are experiencing side effects: TO KILL YOUR CANCER! A fellow stem-cell transplant patient once told me that she felt a lot better just knowing that her ills were caused by drugs that were saving her life. But remember, that doesn't mean you should "tough-it-out" or not ask for help.

  • Try to stay positive. Exercise should help. So should see a therapist, meditating, practicing yoga and/or eating a wide variety of healthy food. And don't forget that making time to help others often helps you feel better, too!

Let's stop here. I can just see my editor scowling about how this week's post is too long!

I will share some more specific tips next week. Until then, don't forget to try and feel good and keep smiling!


Myeloma Caregiver Wife Blog: Caregiver Support

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Quentin Crisp said, "Health consists of having the same diseases as one's neighbors." I have always thought that was a good explanation for why support groups work. 
When Tom Blakney's wife Kay was diagnosed with multiple myeloma in 1997 in Seattle, WA, they attended the first meeting of a fledgling myeloma support group with five other families. A month after the group was formed, its leader, Ray Larsen, passed away. Tom volunteered to step in and lead the group.
Tom and Kay saw the value of a disease-specific support group though they had never participated in one before. They moved the support group to their church, Aldersgate United Methodist Church in Bellevue, where it continues to this day. 
Kay had a cousin, Mary, who was also an important part of their support system. Mary often provided care for her cousin in the form of emails, lunches, walks and companionship. When Mary's husband passed away suddenly in a tragic car accident, their roles were reversed and Tom and Kay began to provide care and support for Mary.
In 1999, Kay lost her battle with multiple myeloma. Tom's orbit stayed with MM and the support group they had nurtured. 

Tom and Mary fell in love and married, with the strong feeling that the hand of God--and the blessings of their spouses--were directing and embracing this union.
Tom and Mary continue to run the Seattle MM support group, The MM FIGHTERS! Tom refers to it as their "mission project." Because of their history as both "caregivers" and "cared for," caregivers have a special presence in the Seattle group. As Tom noted, "The quietest person in the room is often the caregiver to a newly diagnosed person," and they are often the ones most in need of empowerment. To address this, the caregivers and patients are split into two groups every other month. Many of the "seasoned" caregivers are savvy and up-to-date on MM, and they have a lot to share. Mary leads the caregivers' sessions, while Tom leads the patients' sessions.
After hearing about this, we tried that same splitting of caregivers and patients in our local Portland Oregon MM Support Group meeting last month. I think both groups were enriched by the depth of the communication that happened in each group. There are some topics that a caregiver can't talk about in a room with MM patients in it, and topics that are equally challenging for a patient to say to anyone but another MM patient. 

The MM FIGHTERS! Support Group in Seattle is now about 200 families strong, mostly served by an active email/internet connection by Tom and Mary Blakney. The monthly meetings are attended by 30-45 patients and caregivers. The Washington MM community is thriving because of their unique partnership and commitment.

Caregiver stories fascinate me. Passion and survival are incredible forces. The journeys tend to have a much more powerful trajectory than would ever be imagined going in, and a great amount of energy. I suspect that many of the myeloma support groups have an interesting and inspiring history. How did yours start?