It has been two weeks since I traveled to OSU to seek their input and recommendations for the treatment of this leukemia. Today, I am no closer to making a decision than I was two weeks ago. I am scheduled to return to OSU in mid-August to confer with the specialists about what decision I have arrived at.
I am fortunate and blessed to have a mind that is inquisitive and a seeker of knowledge. On the other hand, assembling all of this data and information tends to muddy the waters of my decision making process. In my opinion, there are a couple of treatment options worth consideration.
I was sold on the recommendation to use low-dose splenic irradiation. I had completed my research, consulted with a radiation oncologist, and was moving in that direction. Then support from my local doctor as well as the OSU specialist was non-existent. Without local support, the radiation oncologist said he would not proceed. Door closed.
http://www.thegreenjournal.com/article/S0167-8140(00)00316-9/abstract
I could return to Rituxan, the monoclonal antibody that was the last treatment I received. I have had a serious, life-threatening reaction to this drug, but it did give me a few years with the leukemia being relatively calm, although a remission was never achieved. Some experts are using low-dose versions of this protocol and that is intriguing to me, but again, I've had difficulty obtaining support from physicians for this protocol. It is available as a clinical trial at the NIH, but I do not know if I am up to the travel again.
http://clinicaltrials.gov/ct2/show/NCT00366418
The OSU specialist is eager for me to use the drug Revlimid. It is an immuno-modulating drug that works in a different method than typical chemotherapeutic drugs. This drug would have to be taken in the context of a clinical trial at OSU. Some travel would be involved, but OSU is much closer than Washington, DC. My concern with this drug is the potential for serious, life-threatening side effects.
http://clltopics.org/Chemo/Revlimid.htm
The "king" of all CLL treatments is transplant -- either stem cell or cord blood transplant. I am not a person known to take risks, and most transplants offer a 50% chance of death from the procedure. It is (outside of God's intervention) the only medical treatment that has any potential for my having a new immune system established and a shot at a normal life expectancy. Big risks. Big rewards.
http://bethesdatrials.cancer.gov/clinical-research/search_detail.aspx?ProtocolID=NCI-07-C-0195
The last option, which is one that I am seriously considering, is to do absolutely nothing. There is no known cure. When I read through hundreds of pages of data, this is the, albeit sobering, bottom line. Yet, it is the human spirit to fight for life and follow the medical experts. Do I have the courage to disengage from conventional medicine and simply live out what time God has appointed for me?
For those of you who are information junkies like myself, I have inserted links after each treatment option. If you review any of this information and have a brilliant revelation, please share it with me.
I appreciate your prayers as I continue to travel toward a treatment decision.
"May the God of our Lord Jesus Christ, the Father of glory, give to you the spirit of wisdom and revelation in the knowledge of Him" Ephesians 1:17
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