April 25 Not Doing Autologous Stem Cell Transplant

I have written several posts on the subject of High Dose Chemotherapy with Autologous Stem Cell Rescue, otherwise abbreviated to ASCT.  March 31 Bethesda; March 4 Consultation at Johns Hopkins; March 2 Moving Fast; February 24 Stem Cell Transplant Update; February 17 Investigators Task Force.  Many people on Team Hunter have been assisting in the research.

The issues are many, complex, and full of unknowns.  The risks are high all around.  The benefits are uncertain.  Some of the oncologists in the practice that I am working with, including “my” doctor, have been, since my diagnosis, strongly encouraging the decision to have this procedure.  Yet, the research literature and other sources raise a lot of questions about the risks and the potential benefits of the procedure.  The “second opinion” consultations at Johns Hopkins and NIH/National Cancer Institute were not encouraging.

Last Thursday, my son Shawn and his wife Amy went with me to see Dr. Gregory Orloff, the Co-Director of the Bone Marrow Transplant Program in Inova Fairfax Hospital.  I had seen Dr. Orloff one time previously, in January.  He is associated with the doctors in the oncology practice with which I am a patient.

Shawn, Amy and I had prepared a couple dozen questions in preparation for the meeting, many of which were addressed in one way or another in the course of the discussion.

To my satisfaction, Dr. Orloff had in front of him the reports from Johns Hopkins and NIH concerning their consultations with me on this subject.  He addressed the points made in these reports.  I was glad he did this, as it put his comments in context of the other advice I have received.

Orloff discussed current research that is saying there is not any scientific basis for saying the ASCT benefits the patient in terms of longevity.  I was not entirely  clear as to whether he was referring specifically to Mantle Cell Lymphoma or to lymphomas generally, but the point is relevant to me.  I had previously read this in the scientific literature.  The two-decades-old research at M.D. Anderson cancer center in Texas, that had led to the recommendation for the ASCT, was scientifically flawed because there were no comparison groups.

We learned that an alternative to doing the ASCT would be to take another round (two cycles) of the HYPER-CVAD chemotherapy prototcol that I have been on already for two rounds/phases.  And then follow up with PET scans every three months.

We also learned that although the ASCT is a very high risk procedure, (and we learned in more detail what those risks are)  in fact the recovery period would not be likely to be as long as I had been led to imagine (probably by some nurses or some particular cases).

Dr. Orloff suggested we as a family spend the weekend discussing the matter, and make a decision by Monday and communicate that decision to my doctor, Dr. Kula.  He also wants another PET scan right away.

Shawn, Amy and I all seemed to be in agreement to not do the ASCT.  Hal agrees to whatever I decide.

I am dreading and fearing another two cycles of the HYPERCVAD.  It will take about 42 days.  However, I know I have survived it before.  I know the recovery is longer and more difficult each time (the effects are cumulative), but I feel I can handle it with God’s help and Team Hunter on my side.  I will likely be going back to hospital the middle of the week.

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