Thought, since I was once told I had 3-5 years, 37 years ago, I would share some of my background with you.
First treated by local hematology/oncologist in Denver with Leukeran and prednisone. Likely before it was needed. Later seen by Dr Freireich at MDA. His people round tabled my case and chose Fludaribine over 2-CDA. In discussion with Dr Freireich I asked, if Fludara was unsuccessful, could I take 2-CDA? He said no. I then asked if 2-CDA unsuccessful, could I take Fludara, and he said yes. With this, I opted for 2-CDA. He went back to their "round-table" and sold them on allowing me 2-CDA. (This was at a time dosage of Fludara was experimental, and mortality was not good)
2-CDA was treatment of choice for hairy-cell, but experimental for CLL. I took the 2CDA and got a remission followed by MDA, where I saw Dr's Kantarjn, Wierda, as well as Freireich.
A few years later I married a MN girl, so moved to Rochester MN, home of Mayo. There I saw several Drs finally settling on Dr. Neal Kay. Eventually, and before I saw Dr. Kay, I again was given another sequence of 2-CDA via MDA protocol. About 10 years ago I received Rutuxin, 2 courses, and about 5 years ago I received FCR via MDA protocol.
Currently living in FL and being followed by Dr Chanan-Khan at Mayo, in Jacksonville.
Still hanging in. Guessing if/when needed, I may see Ibrutinib.
So, you now have an abbreviated story of someone who has lived with CLL for nearly 38 years.
Best to you and yours.
Doyle
Doyle W. Garrett
