My life was deeply touched this fall by three special, hardworking couples: Karl and Lorraine Vollstedt, Howard and Teresa Martinson, and Harold and Sue VanDuyn. Each went out of their way to welcome me into their local myeloma support group community.

With the help of myeloma survivor Barb Davis, Karl and Lorraine are co-leaders of the Stillwater, Minnesota Multiple Myeloma Support Group. I met them when I attended my first ever support group meeting five years ago.

I am fond of telling anyone who will listen that the education I received—and the friendships I made there—helped save my life.

After a number of years, Karl is still alive and kicking. Myeloma and advancing years have taken their toll on Karl. And Lorraine recently had both knees replaced, along with a painful foot surgery. But you wouldn't know it by talking with them—two of the most positive, upbeat people I have ever met

Lorraine was kind enough to invite me to stay with them during my recent visit north. I was scheduled to speak to a myeloma support group in Minneapolis, but I set up my schedule to allow me to spend a couple extra days with Karl.

We drove into the city for a tour of Target Field, the new Minnesota Twins' ballpark. We visited a homeless center there, too; Karl is a member of their board of directors.

And speaking of homeless shelters, my new friends and support group leaders, Howard and Teresa, in Spokane, Washington, also help to run a shelter in nearby Coeur d'Alene, Idaho.

What?  Like dealing with their own cancer and helping other patients and caregivers—doesn't keep them busy enough? Amazing!

I met Howard and Teresa—and our third couple, Harold and Sue—in Dallas at the IMF's Support Group Summit. Harold had just introduced himself when he started bragging-up their hometown of Grand Rapids, Michigan. They invited me up to speak to their group and I eagerly accepted.  Even thought Grand Rapids is the state's second largest city, there wasn't a support group for myeloma patients anywhere to be found nearby. So of course, this energetic couple started one ten months ago.

With the help of the IMF, the new, fledgling group is already amazingly successful.  Over 40 patients, caregivers and family members somehow squeezed into a room in the world famous Gilda's Club to hear my story on Monday. And Harold was right! Grand Rapids was a very impressive city, with new medical and research buildings rising everywhere.

But it's the people that make Stillwater, Spokane and Grand Rapids so special. Everyone I met was warm and helpful.

Harold only recently recovered from a stem cell transplant, and some of his counts haven't recovered.  But like Karl and Lorraine, you wouldn't know it!  Harold may be the patient face of the new group, but Sue pulls everything together.  She's the organizer.

Isn't that always the case?  Behind most every helpful myeloma survivor, there is a dutiful caregiver that helps monitor their medications, gets them to appointments on time and helps emotionally hold things together.

At breakfast Tuesday, Harold started rattling-off examples of all the new myeloma friends the couple had made since starting their group.  Right back at you, Harold!  I hope I make the list.  I can't imagine having better friends than Karl, Lorraine, Howard, Teresa, Harold and Sue!

Three exceptional patient/caregiver teams and support group leaders.  Six exceptional friends.

Funny how a cancer like multiple myeloma can bring out the best in people, isn't it?

Feel good and keep smiling!

Pat

I met a wonderful woman recently at a support group meeting. Before and after I spoke to the group, she shared her experience with me, gushing several times that her new medical oncologist made her feel special.

He doesn't enter the room keeping one hand on the door while he pretends to listen to me," she said.

Apparently she had recently relocated from a larger metropolitan area to a much smaller, friendlier town in the Pacific Northwest. But the woman suffered from significant bone damage caused by her multiple myeloma. And she also mentioned several serious co-morbidities that would have me packing my bags and heading to see a big city specialist!

Considering that a number of other support group members had expressed disappointment with their local oncologists, I'm pleased for her. Crafting a good relationship based on trust of one's doctor can be a special thing.

But it can have a dark side. Blind trust in the guidance of any physician can become problematic for a multiple myeloma patient, especially if the physician isn't a specialist. And even then, a second opinion is almost always a good idea whenever we find ourselves facing an important therapy crossroad.

Finding a medical oncologist that is ready and willing to help you coordinate your therapy is the cornerstone of building a solid healthcare team. My advice? Shop around until you find a medical oncologist that gets you. But make sure that he or she is willing to work closely with--and ultimately follow the recommendation of--one or more myeloma specialists.

Pat

You have been diagnosed with multiple myeloma.  You and your family are shocked, scared and shaken. The initial reaction--by you and your doctor--is to start treatment immediately. 

STOP! Time is rarely of the essence following a multiple myeloma diagnosis. Multiple myeloma tends to be a slow moving, plodding yet unstoppable disease. A few hours, days or even weeks are unlikely to affect your overall prognosis.

Even if you have already started treatment, it is never too late to re-evaluate your treatment plan. Have you considered a second opinion? Why are you and your doctor doing what you are doing?  What are your expectations and goals? When is it time to change course, continue with your current treatment regimen or watch, wait and do nothing at all?

These are big decisions--and very difficult to make on your own, even with the help of a caregiver.Unlike some other cancers, myeloma patients often face overwhelming treatment options. Most work at first.  But what then?  Do you undergo an autologous stem cell transplant now, or wait?  If you do decide to transplant, do you start maintenance therapy soon afterwards or wait?  When do you resume treatment if and when your numbers start to rise again?  And which drugs should be used to best slow your relapse? 

By assembling a comprehensive health care team, you can surround yourself with experienced, qualified health care professionals to help you make the treatment choices which are best for you. 

Think of yourself as the CEO of a major company. Or a general contractor of a building project. Are you into sports? How about acting like you are the owner of a professional sports team? Or the president of the PTA?

Regardless of which leadership style you emulate, remember that powerful leaders in important positions surround themselves with experienced support staff. You should do the same. Here are the positions you need to fill as you create your winning support team:

·      Primary Caregiver.  This may be the most important position.  It can be a spouse, family member or friend.  While it is best to if one person fills this role, it can be done by a combination of people.  Your primary caregiver is responsible for reminding you to take your meds and help you get to and from medical appointments--and to take careful notes and help you ask questions at those appointments.  They are also there to provide emotional support and help you coordinate your health care team.

·      Multiple Myeloma Specialist.  This can be an oncologist or hematologist, preferably from a regional or nationally known cancer center.  Once you decide which treatment course to follow, this specialist becomes a consultant, keeping your team on course, or helping you make course corrections as necessarily.

·      Medical Oncologist.  This is the doc you see regularly.  He or she consults with your specialist of choice, working together to make your day-to-day treatment decisions. 

·       Oncology Nurse(s).  Let's face it;  oncology nurses run the show!  They keep track of prescriptions and remind the doctor about day-to-day details.  They are the ones who administer your IV and help minimize treatment side-effects.  Oncology nurses coordinate your labs and make sure you are doing OK.  In my next life, I am going to be an oncology nurse!  These brave, skilled women (and men!) have the difficult task of working directly with the patient day to day. They rock!

·      Internist or Family Doctor.  Don't let cancer dominate your entire health care world. You still need a regular doc to handle non-cancer -related issues.

·      Support Group.  Multiple myeloma support groups share all kind of details and data. Learn how other patients cope with side effects.  Learn what other patients are using and why.  Your support group members will become like family.  They understand what you are going through. 

·      Family and Friends.  Your friends and family want to help--they just don't know how--and you can't expect them to read your mind.  When they offer to help, try and assign them small, simple and achievable tasks.  They will feel good about themselves--and you will feel better knowing you have people surrounding you who love and care for you.

You don't have to stop there!  Add a nutritionist and/or naturopathic MD. How about a massage therapist or acupuncturist?  Try a physical trainer or therapist. You can make your medical team as large or small as you like. Keep it simple or expand it as you go--it's up to you--you are your own team's leader!

Of course, you won't be able to build a winning medical team overnight. It may take months or years to develop. And, like a good team owner or coach, you may decide to make changes as time goes on. Remember, winning owners change coaches and team personnel as needed. Team chemistry is important. If someone isn't contributing, or can't get along with other team members, find someone who can!

Good luck building your winning health care team!  Come on--I know you can do it--your life may depend on it. 

Feel good and keep smiling!

Pat

Late last year I met a 19-year multiple myeloma survivor at the American Society of Hematology (ASH) meetings in San Diego.

She was an elderly African-American woman who seemed to be in surprisingly good health.

As I often do when I meet any long-time survivor, I asked her what her secret was for living so long. She thought a moment and said, "Therapy is like riding a horse."

"A horse?" I asked. 

"Like riding a horse," she repeated a bit mysteriously. "You should ride that horse until it drops--then wait for it to get up, and ride it again!"

As we talked some more, I began to understand her point. Patients should use a therapy for as long as they can, then go back to it and try it again and again until their doctor is sure that they have gotten every possible day--or mile--out of the drug or drugs that they've been using.

She explained that there are only so many myeloma drugs available to use at any one time. She felt that getting the most out of each of them had added years to her life. "And I've been lucky!" she said. "Just when I thought that I was running out of time, another drug came along to help me live a while longer."

My conversation with this wise and elegant survivor changed the way I think about myeloma therapy.

So many of us can be in a hurry to change horses midstream, abandoning a therapy that might not be working as well now as it did before. But that can be a mistake.

Even if your numbers aren't going down anymore--maybe they're stable, or even rising slowly--squeezing every precious day out of your therapy can add up to a lot of extra living in the end.

Who knows? A few extra months here and there might make the difference between becoming a statistic or living to fight another day! Wise advice, indeed!

Feel good and keep smiling! 

Pat

This week I am going to examine the many side effects of dexamethasone--and what we as patients can do to help minimize them.

In my first book, "Living with Multiple Myeloma," I feature a chapter titled, "Demon Dex."   Here's an excerpt:

I would like to continue our discussion about ways to deal with treatment-related side effects by focusing on nausea and what I call a "sour stomach."

Nausea is a common side effect among multiple myeloma patients who are undergoing chemotherapy. And almost all stem cell transplant recipients experience nausea following high -dose chemo and the infusion of stem cells.

Severe nausea should be treated by a physician. Powerful drugs like Zofran and Compazine are often used to help. So is my anti-nausea drug of choice, Ativan.

But once a patient's severe nausea is under control, he or she is often left with a less intense form of nausea that can linger for days.  Not severe enough to require prescription meds, chronic nausea can be quite unsettling. 

The same can be said for a sour stomach. In between waves of nausea and an assault by any number of medications, it's no surprise that a patient's stomach can feel out-of-whack and need attention!

Bear in mind that what follows are suggestions based on my own experience as well as suggestions from fellow myeloma patients. Remember to let your oncologist know before trying any herb or supplement. It's best to err on the side of caution before making any significant changes to your diet or supplement regimen.

So what do we do to help get our chronic nausea and/or sour stomach symptoms under control?

•  Let's start with ginger. I can remember my mother always poured me ginger ale following childhood bouts with the flu. And you know what they say:  mother knows best! Ginger is inexpensive and safe.  It can be purchased whole, as a powder, in capsules or processed foods like Ginger Snaps or ginger candy. One of our readers last week recommended drinking hot ginger tea. Great suggestion, Diane!
  
  
•  Ginger is also a powerful anti-inflammatory.  I take two grams of ginger (four 500 mg capsules) daily to help with both.
  
  
• Something as simple as sipping hot lemon water might also be worth a try.
  
  
•  Sucking on peppermints can also help.  I keep a few mints in my pocket just in case my stomach acts-up.
  
  
• If peppermint isn't doing the trick, you might want to try sucking on a Queasy-Pop.  A regular reader of my blog sent me a package and I love them!  Advertised as "the natural way to ease a queasy stomach," these inexpensive and tasty suckers work for me.  You can find a local supplier or order them online at www.queasypop.com.
  
  
•  I previously mentioned that calcium supplements can help settle a sour stomach.  Calcium-based antacids do the trick here.  Look for the active ingredient "calcium carbonate" on the back of the package.
  
  
• Several patients I know swear that eating a banana helps them.  Worth a try!
  
  
• Simply keeping something in your stomach and "grazing" throughout the day can help. Well-cooked rice might be a good place to start.
  
  
• If you can keep it down, yogurt works for some, although I find it to be too high in acid for me, and yogurt can be difficult to digest.
  
  
•  Native Remedies.com describes the herb, Mentha piperita as a "calmative and analgesic herb which aids digestion, prevents nausea and vomiting and promotes the flow of bile."
  
  
• And I wouldn't be surprised if someone hasn't suggested marijuana once they hear you are on chemotherapy. I never did try pot to help with my chronic post-transplant nausea. But lots of patients in states where medical marijuana is legal swear by it.
  
  
• Switching gears, what about acupressure? Some studies suggest wrist acupressure can help manage nausea caused by chemotherapy. One pressure point thought to help nausea is on the inside of your arm, a few inches above the wrist. 

Any time you are dealing with chronic nausea or pain, meditation and guided imagery might also be worth a try. But if you do, might I suggest enlisting the help of a professional at the start? The same advice applies to using different herbs and things like acupressure, too. Alternative therapies can be incredibly effective, if you know how and when to use them.

Can you think of any stomach settling tips I might have missed? Please don't hesitate to share them. 

Next time I will pass along a number of helpful suggestions for those of you that are battling another common myeloma therapy side effect: constipation.

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!