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A reader shares his step by step decision to undergo a stem cell transplant (Part One)

Home/Tips, Transplants/A reader shares his step by step decision to undergo a stem cell transplant (Part One)

A reader shares his step by step decision to undergo a stem cell transplant (Part One)

Most multiple myeloma patients under the age of 75–or sometimes even older–are faced with fateful decisions of if and when to undergo a stem cell transplant.

An autologous stem cell transplant (SCT) is still the standard of care for patients who are healthy enough to undergo the procedure.

They have become surprisingly safe and reliable.  For example, I believe that Moffitt Cancer Center, where I underwent my SCT, has not had a patient die during the procedure for years.  Trust me.  I’m not saying that going ahead with one or two of these bad boys is any fun.  And they don’t always achieve the desired result of two or more years of complete response (CR).  But Velcade or Revlimid doesn’t always work, either.

And that is what a SCT has become:  One of several major anti-myeloma options, all of which a vast majority of patients will try during their myeloma lives.

Myeloma docs used to be (Some still are!) quick to rush a newly diagnosed patient to transplant.  Three or four months of induction therapy, following by stem cell harvest and then a SCT.  But more and more patients are choosing to wait, usually because their induction treatment works so well they can achieve CR without a transplant.

Several reliable studies have proven that waiting until a first–or even second relapse to transplant–doesn’t hurt the odds of achieving success.

So according to Mayo clinic stats, over 40% of eligible patients are choosing to wait these days, making this one of the most difficult and fateful decisions a potential SCT recipient must face.

I wrote several chapters about my decision to wait to transplant in my first book, Living with Multiple Myeloma.

One of our regular readers, Bill O’Halloran, kindly volunteered to take the time to review how and why he chose to transplant when he did.  I would like to share Bill’s decision making journey–in his own, unedited words–with you now.

I recently completed a second book, Stem Cell Transplants from a Patient’s Perspective.  In the book, I interview dozens of transplant patients and share parts of their (and my!) stories.  Some are auto (their own stem cells) recipients.  Some are allo (using donor cells) recipients.  But all were kind enough to make lots of suggestions about what to expect, how you might feel at certain points during the process–as well as tips for what to do and not do–before, during and after a transplant.

But I didn’t spend much time reviewing how a patient gets to the point when they are ready to transplant.  So I’m excited that Bill has graciously decided to share his decision making journey with you in such systematic detail.

PLEASE NOTE:  Bills Physician, Dr. Paul Richardson of Dana-Farber in Boston, is by most anyone’s measure one of the top ten myeloma specialists in the world.  Bill was very fortunate to be in such good hands!

 

Autologous Stem Cell Transplant (ASCT) Decision Making Process

Introduction

If you are reading this, you are probably either a patient with Multiple Meloma or close to someone who is.  I am writing this at the suggestion of Pat Killingsworth, a prolific blogger on myeloma.

I recently went through a decision process on whether or not to undergo an Autologous Stem Cell Transplant (ASCT).  An autologous transplant involves harvesting my own stem cells, using high-dose chemotherapy to destroy the plasma cells in the bone marrow, and then re-infusing my own harvested stem cells to rebuild my immune system.  Pat thought it would be instructive for me to document my decision making process as a case study that might help other myeloma patients faced with the same choice.

Background

I received the dreaded news that I had Multiple Myeloma in July 2011 at the age of 68.  I am a patient at the Dana Farber Cancer Institute in Boston, MA., and I was fortunate to retain as my hematological oncologist Dr. Paul G. Richardson, one of the world-renowned experts in myeloma.   My diagnosis was the IgA Kappa form of Multiple Myeloma, classified as Stage 1 by the International Staging System, with the high-risk cytogenetic translocation of chromosomes 4 and 14, abbreviated as t(4;14).

Dr. Richardson immediately offered me the opportunity to participate in a Phase 1 clinical trial involving the oral form of a second generation proteasome inhibitor, MLN9708, developed by Millenium Pharmaceuticals as a potential replacement for Velcade (bortezomib).  Only a few patients had been recruited nationally at that time (fewer than 12), but initial results were very promising (100% response rate!).  Everyone at DFCI was excited about this protocol, and I immediately accepted.  On August 1, I began twelve 28-day cycles of the regimen, consisting of MLN9708, Revlimid (lenalidomide), and low-dose dexamethasone.  Following the 12 cycles of treatment, the plan was to continue maintenance therapy with MLN9708 alone for several years.  At this time, there was no mention or thought of a stem cell transplant for reasons that will become apparent later.

I responded very well to the treatment.  After four cycles, my M Spike dropped from 2.0 to zero, my IgA levels dropped from 3180 to 88, my Kappa/Lambda ratio dropped from 578 to 0.7, and my serum immunofixation results showed only faint monoclonal gammopathy.  My status then would be classified as a Very Good Partial Response.  I was feeling great, and aside from my dex highs and lows, I was suffering no noticeable side effects from the medication.

Transplant Option

 On November 30, at the beginning of Cycle 5, Dr. Richardson threw me a curve ball.  He strongly suggested that I enroll in a clinical trial involving Autologous Stem Cell Transplant (ASCT)!  I asked him why he was suggesting this.  The answer surprised me.  He said that I appeared to be so unhealthy when he first saw me in July that he ruled out suggesting a stem cell transplant because of it!  However, I had recovered so remarkably in the intervening 4 months that he felt I was ready for this option.

The BMT CTN Protocol 0702 ASCT clinical trial he was suggesting has three different randomly-selected arms:

Arm 1:  Tandem ASCTs, followed by Revlimid maintenance for 3 years.

Arm 2:  Single ASCT, followed by 4 cycles of Velcade/Revlimid/dexamethasone consolidation, followed by Revlimid maintenance for 3 years.

Arm 3:  Single ASCT, followed by Revlimid maintenance for 3 years.

Dr. Richardson is not a great fan of tandem ASCTs, but he is very enthusiastic about Revlimid maintenance following stem cell transplants.  Ref. 1 is a link to a video where he expounds on these matters.  He makes a very compelling case in this video for me to join this clinical trial.

Now I had a major decision to make.  Being an engineer by training and inclination, I decided to research this matter on my own in order to determine the pros and cons of doing an early ASCT, rather than finishing my current clinical trial protocol and waiting until my first relapse.

Second Opinion

At this point, it might have been wise for me to consider getting a second opinion from another myeloma expert on the advisability of doing an early transplant.  However, since Dr. Richardson is a world expert in these matters, whom would I trust more than him, God?  So I decided to rely on my own research.  I would not necessarily recommend my approach to others.  Finding another expert voice who might articulate the options in a different manner than your own doctor might help you to clarify the issues and make a better-informed decision.  In other words, “Do as I say, not as I do.”

 

Thanks, Bill!  Too long to run as one installment, tomorrow I will post Part Two of Bills decision making process to transplant, including lots of links to studies which support immediately transplanting–or waiting.

Feel good and keep smiling!  Pat