IMF Patient & Family Seminar

Spanky is excited about my blood tests

Last Thursday I visited my oncologist. We reviewed the most recent lab tests. Things are good. My M-Spike holds at 0.1 g/dL and serum free light chain numbers are all within the reference range. My drug-free remission continues 21 months post transplant.

On Friday I drove to Portland, OR to attend the International Myeloma Foundation’s Patient and Family Seminar. My wife and I attended one in Seattle back in 2008. At the time, we were new to the myeloma world. The vast amount of information overwhelmed us, though we did learn a lot. This time around, I arrived as an informed patient full of questions and able to better appreciate the comprehensive analysis of our complicated disease.

The Highlights

  • I met several individuals who, like myself, were in the midst of long term remissions from autologous stem cell transplants with durations of 3, 4, 6, and 8 years. Our conversations validated the choice we made prior to the availability of today’s drugs.
  • Multiple myeloma patients can be thought of as “slow growers” and “fast growers.” Approximately 1 in 4 patients with MM presents with high-risk disease that requires more aggressive and continuous therapy.
  • Typically, most of us with MM received a prognosis of 3-5 years. Now, the consensus is a median survival rate of 8+ years. That is a significant change since my diagnosis in 2007.
  • Transplants, plus thalidomide, revlimid, and velcade are the current therapies leading this improvement. Furthermore, new drug trials on their derivatives are promising. An interesting outcome of the trials of those drugs is that individuals who became resistant to revlimid and velcade are responding well. These new drugs are still winding their way through the FDA’s regulatory process.
  • Bone lesions do not ever completely heal. Deterioration can be arrested. Scar tissue forms but the bone is not as strong. The doctors at this seminar do not recommend bisphosphanates in the absence of bone lesions. Dr. Berenson’s group in LA, however, does. So, differences of opinion exist.
  • There is currently no drug solution to peripheral neuropathy. PN caused by drug treatment needs to be addressed with dosage adjustment when it first appears or it may become a chronic problem. Well, I think most of us with PN knew that but it was nice to hear experts say it aloud.
  • Studies presented at last year’s ASH meetings showed remissions after transplant could double with maintenance. Overall survival, though, did not improve. Consequently, many doctors still prefer waiting until relapse before interfering with a remission.
  • I heard numbers as high as $8500 per month for revlimid and something similar for a month’s worth of velcade infusions!!!

Spring cloud looking down at me.

Cure or Control?

No unequivocal answer here. The lineup of speakers was laden with doctors from the Mayo Clinic. Their philosophy favors controlling myeloma. The default metaphor used was that of pruning a tree. I asked for comments on the University of Arkansas Medical School’s Total Therapy protocol. Arkansas is the only myeloma clinic touting a curative therapy.

Part of the Mayo philosophy stems from the belief that there is no such thing as a safe drug. Therefore, the extraordinary induction, double transplants, bridging, and maintenance treatments of Total Therapy limit it to younger patients capable of tolerating and enduring the regimen. Issues of quality of life and toxicity causing chronic side effects need careful consideration. Moreover, the side effects can be both physical and financial.

A morning visitor

Nonetheless, UAMS is held in high regard for their genetics studies and proof that intensive therapies can alter the equation. The feeling I got was that we are all in this together and differences of opinion drive the science forward. I recommend readers refer to Nick’s Myeloma Blog for a highly detailed first person account of the Total Therapy protocol.

Attendance at the IMF seminar filled me with encouragement about my health. The IMF is our friend. This year marks their 20th anniversary. During that span, they have raised $57 million for research and education. The IMF, along with the MMRF and the Leukemia and Lymphoma Society are fundamental to us being well-informed and living longer healthier lives with multiple myeloma.

5 thoughts on “IMF Patient & Family Seminar

  1. Another clear, thought-provoking post, John. Enjoyed it!
    I have read quite a bit about total therapy…it’s too radical for my tastes, and I would be very concerned about the longterm toxicity…but then, right now I am in a very privileged spot, so it’s easy to say “no, never.” In fact, I used to say that I would never do ANY conventional treatments…but I have become more realistic now, and my attitude has changed to “well, if needed, I will do it.” In part, this is thanks to you.
    Love that photo of my godkitty…made me chuckle. 🙂
    Yaaaay for remissions! Keep it up!


  2. John, there is hope and optimism in your tone. Thanks for your explanation on where things stand currently with this disease.

    The best thing, though, are the pictures and the words you started with: things are good!

    Best of luck to you and your family.


  3. John: It was good to see you at the conference. I share your optimism and hopefulness, despite the imminent death of one of our long-time support group members. (I know you recently lost a blog-friend to myeloma, so you are not unaware of the lure of pessimism or the pitfalls of false optimism.) Thanks for the well-written summary. And thanks for your even-keeled, positive approach to this disease and to life. It helps me. David


  4. John –thank you for this informative post. Even though there are substantial differences between health care in Canada where I live and the US one problem common to both is getting coverage for newer therapies such as Revlimid (lenalidomide). Up here we have 10 provinces (and 2 territories) who all decide coverage based on their own criteria.

    Did you see the preliminary results of the latest study with Revlimid? I don’t have all the details but it looks quite encouraging. Apparently the provincial jurisdictions are waiting on this latest study to decide on coverage for Revlimid. I have heard high costs too but $8500 per month is unmanageable for most people.

    While I am still at the smouldering stage my numbers are worsening such I suspect I will need treatment at some stage. I certainly hope this drug is covered by then.

    In any event I always appreciate your writing which is so elegant and informative. Thanks, Gerry.


  5. Thank you John, I have learnt a little more from this fine post, eager to read all the latest and to further my education on MM, written clearly making nice easy reading. Velcade has not worked well for Hamada, so it looks like Revlimid after a six week rest to restore his bloods somewhat. Will have final stats this week and will write an update then. Wishing you continued wellbeing, you really are doing so well.


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