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I was diagnosed July of 2018 by a local oncologist, CLL stage 4. He wanted to treat me immediately with BR. I asked him about trials because I did not want to do chemo and read about some superior non- chemo meds. He said he would check, and afterwards, said there were no trials available. (I found out later that this was not the case.) I had to spend so much time figuring my finances and insurance that I became weary and did the BR in August for two days. This oncologist/hematologist had been highly recommended by my family physician whom I trusted at the time.
Thankfully I had an allergic reaction to allopurinol or the BR and could not be treated further at the time (absolute neutrophils .20). This gave me time to investigate (went to Winship in Atlanta and Dr. Cohen told me to continue the BR). My neutrophils never went back up so I investigated further. I heard Dr. Weirda speak online and decided to go to him in September for another opinion. (He said a lot of CLL patients were not getting the right help and that struck a chord with me.) He was great. I had not had two important tests. He thought I had a high-risk feature. He recommended stopping the BR and have the two additional tests in 3 months. I happily concurred. Turned out I was unmutated and BR was not the right treat for me.
I asked Dr. Weirda if he knew anyone in Florida (closer to home) who could treat me with Obinituzumab. I had tried to stay on with the local oncologist for months but his attitude was not tolerable. He was visibly upset that I went to MDA etc. I had a hard time finding a local doctor who would work with a specialist. They wanted to take charge.
Dr. Weirda knew Dr. Pinilla at Moffitt and I saw him. He was great too. But he recommended waiting to be treated, as I had been feeling well. Months later I asked Dr. Pinilla if he knew of anyone even closer to home, and he knew three doctors at the Mayo in Jacksonville. Knowing treatment time was approaching I went with the first doctor I could get an appointment with, Dr. Kharfan. He is extremely nice.
Soon I will be treated with Obinituzumab and Venetoclax at the Mayo in Jacksonville.
CLL saga to be continued…