Sunday, November 7, 2010

Who I am...Post #3

I am not a Guinea Pig.

This post was part of the reason that I decided to write this series of Who I Am postings.  However, I haven't been sure of where in the series this post should go.  I have finally decided that I was simply procrastinating because I wasn't sure how I was going to write this one.  So I've stopped procrastinating and decided that Post #3 is as good as any to talk about my NOT being a Guinea Pig.  Many people have wondered and asked me about my transplant with the misconception that I underwent the standard bone marrow transplant involving very large needles inserted into bones of both myself and my sister.  This is simply not the case.  My transplant was and is research based and very different from what many people think of as a bone marrow transplant.

In April of this year I underwent a stem cell transplant at the National Institute of Health in Bethesda, Maryland.  I was a part of a protocol (experimental research) titled:  Allogeneic HSCT Without Preparative Chemotherapy or With Low-Intensity Preparative Chemotherapy Using Sirolimus and Sirolimus Generated Donor Th2 Cells for Therapy of Refractory Leukemia, Lymphoma, Myeloma, or Myelodysplastic Syndrome (There's a mouthful of really big words for you).  I'll break the title down a bit for you:
  • Allogenic means that I had a donor (my sister Amanda) as opposed to Autologous (I would have been my own donor)
  • I did have the Low-Intensity Preparative Chemotherapy
  • I was put on Sirolimus (an immune-suppressing medication) that I still take today
  • On day +14 of my transplant I received "enhanced" Th2 Cells (also from my donor)
  • My cancer was Refractory Lymphoma (did not respond to chemotherapy)
The rest of that big long title either doesn't fully apply to my experience or I have no idea what it means.

I recently emailed the Transplant Coordinator for my Team at NIH to get some of the specific facts regarding the transplant and the protocol so that I could also share those in this blog. 
  • The protocol that I am a part of has been in use since 2004 but has undergone 4 arms/versions in that time.  The protocol gets changed as new things are learned.
  • There have been a little over 100 patients in the 6 years since the start of the first arm.  
  • The 4th arm, the one that I am a part of, has had at this point 20 participants, I came in at the middle and was number 10.
Even I read these numbers and at times think of myself as a Guinea Pig but having worked with my team so closely and understood the way that they think and feel about each of their patients I know without a doubt that I am no Guinea Pig.  I am a person with a life to live and they had an option for me that they felt could have positive results for me and in the process were going to do everything in their power to give me a good outcome.  I thank each member of my team for that.

In the email that I received with the facts about the transplant protocol I also read the following words and felt that instead of trying to paraphrase them I would simply quote them to you directly:
"I hope you know that we never view you (or any our patients) as anything but people in need of help (no guinea pigs here :).   I think we hope that while we’re trying to move forward ideas that we think will help … that we do so in a way that we can share with others.   It sounds a little corny, I know, but we do really care about everyone who comes to our door."  In addition, the head of my team wanted to be sure that I understood "that he views the treatment as ‘an evolution in clinical practice’ – the new/novel features in his protocol are guided by experimental animal data and the clinical trial results."  

So, all of that being said, by me and by members of my medical team I hope that it is clear that while I am one of not very many participants in a research protocol I am Not A Guinea Pig.  I am a person who was battling a very serious disease and not only did this research protocol save my life but the things that they have learned from me will undoubtedly help patients in the future.

1 comment:

  1. First off, I hope your trial participation for your stem cell transplant continues to go well.

    One of my pet peeves is the term "Guinea pig" when used to describe those who participate in trials. Many victims of World War II atrocities under Dr. Mengele were treated as such, but that doesn't mean they lost their humanity at the hands of their oppressors. They still remained people.

    The rules established since then to protect patients who enroll in clinical studies have at their core a recognition of the respect and dignity that people are due. If I could ban the term "Guinea pig" forever from the lexicon, I would. Clinical trial subjects are people and those who treat them are compassionate health care providers and clinicians.

    Until we as a society acknowledge the importance of clinical trial involvement and recognize that this science is indispensable to achieving improved treatments, we will likely continue to hear that disparaging term being bandied about. And that would make us not Guinea pigs, but Dodo birds.