My husband and I have returned from our trip to see Dr. Byrd (leukemia specialist) on July 14th. I did like Dr. Byrd very much (and the care seemed very personalized by the staff given the immense size of OSU). Nevertheless, I returned home only more confused than ever. I broke down and cried in the middle of the consultation as I knew my tentative plan of doing the splenic irradiation was not being endorsed and the obvious seriousness of my situation came to the forefront.
I donated 15 tubes of blood and DNA samples for research both at OSU and at the CLL Consortium at UCSD. Dr. Byrd also ordered several tests. He wants to see if I have developed the 17p deletion. I have always been 13q14 deleted but he said with a long-term CLL that these markers may change. I have always known the risk associated with a 17p deletion (refractory to most conventional treatments). Dr. Byrd felt that knowing this piece of information was the first step that we needed to make. It should be around 2 weeks before we have results. This was a very good recommendation.
They were concered with my infection and drug reaction history. Dr. Byrd felt there is a role for prophylactic medications for me on an ongoing basis (after being told last week at my Infectious Disease consult that they would NOT put me on prophylactic treatments). I just wish there would be a general consensus as to what I should do!
Dr. Byrd's PA took an extensive year-by-year history (was I ever thankful for the record keeping I have done). Immediately she and Dr. Byrd both picked up on the drastic hemoglobin and red blood cell declines by Day 3 of each of my three Fludarabine uses. I know Fludarabine is noted for inducing autoimmune hemolytic anemia (AIHA) and they felt that each time that was what had occurred. I was just associating the drop as a normal side effect of the chemotherapy. If my T-cells were not so low, I seriously would have considered Fludarabine as I tolerated it so well (no reactions, etc.) but upon review of the possible role of AIHA that might have been a poor choice.
I asked Dr. Byrd about splenectomy and he said he didn't think he could locate a surgeon who would touch me with my drug reactions, infection risks, and very enlarged spleen.
Dr Byrd's two recommendations are (1) Revlimid trial; (2) Tru 16 trial. I am concerned because neither is FDA approved for CLL and the research is very preliminary on both drugs. I told Dr. Byrd that I am a conservative person. He sent me home with all of the paperwork for the Revlimid trial. Kevin and I are concerned about the numerous risks associated with Revlimid and my being 5 hours from Dr. Byrd. I have previous trial data from the Roswell Park trial with Revlimid and I just don't see impressive data but I do see many potential risks (blood clots, tumor flare, tumor lysis syndrome, and not to mention pancytopenia/infections. I am to return to OSU in August.
I am not going to make a hurried decision. I need time to process this information. If you asked me today what I was going to do -- I would probably be leaning toward abandoning conventional treatments in their entirety since there is no clear, correct answer as how best to proceed. I may change my mind after I completely review all of my options (I have made a file for each possible treatment with all of the abstracts/articles I could locate. I plan to read all of this material before making a final decision.)
In 12 years of fighting this monster, I have never been so confused. Thank you for your prayers for clarity as I decide upon the next treatment choice.
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