In this issue: Expanded MPNclinic Roundtable on stem cell transplantation. From MPNclinic: Dr. Claire Harrison, Dr. Ruben Mesa, Dr. Richard Silver Dr. David Steensma, Dr. Srdan Verstovsek;
Guest transplant specialists: Dr. Veena Fauble, Dr. Nicolaus Kroeger, Dr. Dornal McLornan, Dr. Tsiporah Shore, Chris Harper.
Considering Stem Cell Transplantation
. © MPN Quarterly Journal, 2014. This work is licensed under a Creative Commons Attribution-NonCommercial No-Derivs 3.0 Unported License. MPNquarterly@gmail.com
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The beginning of your commentary sounds quite similar to mine, at least in terms of our ages and the length of time we have been dealing with MF. I assume that is your biggest challenge. Perhaps I am wrong because you didn’t mention it specifically. On the other hand, I have been dealing with the various stages of blood cancer (PV) for 48 years.
I became transfusion dependent about eight years ago and am now getting two units of red cells every fourteen days. Over the past few months, the disease has clearly taken a sudden turn for the worse. I am much more breathless than I have ever been, and the transfusions make less difference in my levels of fatigue, breathlessness, and weakness.
My ferritin levels are now 3,300 owing to the iron overload created by the frequent transfusions. My spleen is over 32 X 23 centimeters, and I have spleen pain 24/7, at times the pain is excruciating. I can no longer sleep on my back or on my left side.My spleen is also disturbing the blood flow and drainage of my stomach and intestines, pressing on my left kidney, etc. and this creates a double-whammy of unbearable pain, at times. I must watch my diet carefully now. I do not take pain pills of any kind unless the pain is totally unbearable. This is because I have found no pain medication that doesn’t impact my platelets negatively, or the pain pills cause constipation, which only worsens the spleen pain because the bowels are impacted, creating even less space for that miserable spleen to dictate my life. I call it Spleenzilla.
I started the Cytopia study over two years ago and transferred to the newly named drug, Momelibtinib (spelling? Sorry chemo-brain haunts me.) Whatever benefit it provided has clearly ended.However, the drug sure gave me a horrible case of neuropathy in my feet. I am now faced with electing a stem-cell transplant with an unrelated donor. At my age and with my compromised immune system, it is a daunting decision, particularly the specter of the graft/host disease possibilities.It’s great being offered the end of one disease for another that could be as bad. It strikes me as being similar to being offered a million dollars for agreeing to be blinded. Well, I have a tendency for exaggeration. My apologies, again.
At any rate, I am sorry for being so “I” oriented in this spiel. Actually, what I wanted to ask everyone who posts here is to please be specific about details when you write. Problems like spleen size, hematocrit and platelets levels, etc. age, the length of time one has been dealing with the disease are all useful and interesting to those who are reading your thoughts. Without specifics, it is hard to identify with another patient’s issues or to gleam useful information that might be applicable to our own problems.
At any rate, love and peace to all.
I am 67 years old and in the eight year of MF diagnosis. Three years ago I was scheduled for a SCT as I was feeling really weak, fataigued and dealing with very low platelet counts.
I was advised to have a colonscopy, spleen CAT scan and stress test prior to treatment. The SCT team leader also recomended a splenectomy, but did not require the procedure. Thus all the testing and preparation. I had a matching donor and was on my way to SCT when I experienced a heart attack and had a stent inplant.
I felt so much better ater the stent inplant that I postponed my SCT transplant as well as my splenectomy.
Three years latter I am considering revisting a SCT. My spleen is huge and beginning to affect my quality of life. I could relate other issues, but I think I have said enough. I really appreciate the forum as I have many questions and concerns.
Thank you, David… I hope you did read Dr. Verstovsek’s comments on Jakafi to reduce splenomegaly prior to SCT… or even just on its own.