Social media allows for the interactive dissemination of information without boundaries. The possibilities then extend beyond the limits of our personal understanding and credulity. One must just find the right question.
For many years two questions have plagued me. Both relate to the process and results of a stem cell transplant (SCT) or to as it is sometimes referred, a bone marrow transplant. I have read numerous scientific articles describing the outcomes of SCT for AL amyloidosis but found that many of the reports did not differentiate the survival rates, or even include data regarding how many patients, and for how long, were spared the need of continued use of chemotherapy after their treatment.
Since my SCT failed, (at least based on my blood tests that immediately showed not only no decrease in my light chain levels, but rather a doubling of those bothersome proteins,) I was also keen to understand why at the cellular level.
I have learned that often the best source of discovery regarding a rare disease is from the people that live with it every day. So I went to that repository of combined life experience and wisdom, the patients. In the past I had joined an online amyloidosis support group and recently felt to reconnect there. As I began to read many of the comments, old personal questions began to resurface. Finally today I wrote the following.
There are two questions to which I wish I knew the answers. First, does a SCT fail because the Melphalan fails to kill all of the plasma cell clones in the bone marrow? Or is it that survivable clones are re-implanted with the stem cells? Second, my goal for stem cell transplant was to be free of chemo for at least two years. (I don't like taking dexamethasone.) What percentage of patients that have a SCT remain off chemo for at least two years?
I was encouraged at the number and caring quality of the responses that I received. But three in particular had important insights that taught me things that I needed to learn.
First was from a man whose experience was a major reason that I wrote the questions. I had met some amyloidosis patients that had complete responses from their SCT, they were successes, yet their oncologists still kept them on chemotherapy, just in case. Tim wrote the following.
I had an SCT in July of 2011 at xxxxxxxx xxxxxxxxx (had consults at mayo as well). I had VelDex as a front line treatment prior to transplant and achieved near complete response after transplant. My doc wanted to see if we could get to complete response so we resumed VelDex in November of 2011 and continued treatment until June of 2012. I was getting really run down from chemo so voluntarily stopped after a consult at mayo where the specialist there said that they would not have treated at all and would have just waited to see. Flash forward nearly a year and my numbers remain stable and I'm hoping to be chemo free for at least a year. I feel good off the chemo teat and will be wary of getting pushed back on in the future.
Another woman described her story with the preface that she generally did not respond on the site because her story is 'discouraging'. Yet her story was my story. Her SCT failed and she remains on chemotherapy. I felt connected with her and shared my hope that new treatments are already available and on the horizon. It is a good time to be alive.
But the one that affected me the most was from woman who also failed the SCT and her light chain levels remain elevated. But her doctors are not treating her with chemo. This is the question that Barbie and I have been asking for four years. Is the chemo adding days to my life? What would happen if I stopped it?
This woman, named Jan, offered the following after describing her numbers, which were my numbers; except that she is not on chemo.
But as someone said, we are all different. And for us as individuals, the
statistics are meaningless. We either had a response or not. We either need more
treatment or not.
I totally agree with you. I really would like to avoid chemo if I can. So far I
can...I live from 3 month check up to 3 month check up, always knowing it could
change. Hoping the best for you.
Ultimately, Muriel Finkel, the site administrator found the answers through her connections at the Mayo clinic.
To question 1: The SCT doesn't always kill all of the bad clones in the bone marrow.
To question 2: 80% of patients with a successful SCT remain off chemotherapy for at least two years.
This news was very encouraging to me. Generally, scientific studies speak of success in terms of overall survival (who's still alive at 5 years) and disease free progression (who has no evidence of disease progression at 5 years) These numbers refer to quantitative success. They often don't report on whether those patients were on adjuvant (or continued) chemotherapy, (qualitative success). This is what I want to know as this is what makes our days miserable while we wait to add to the survival statistics. Living a long time is great. Living a long time off chemo is outstanding.
So what's next? For now I will remain on chemo. But I am encouraged by those that have chosen a different path having asked these hard questions. Not with just their words, but with their minds and bodies.