Apr 05, 2014 - 7:52 pm
Bill's pills came today. They rushed delivery by UPS. The drug company called yesterday from MI and told us our portion would be $2000 plus and $500/mo after that. Bill and I both thought at the same time, we have to call Xia, the financial wizard at our cancer center. She said they weren't supposed to call us until they talked to them. She ran some numbers from our tax records and said, "you won't pay anything". She faxed the info to the drug company and they called us right back and said we would have them today. We are good for about 16 months then we have to be reevaluated. We have no clue who paid the bulk of it but the co-pay is being paid by Humana, our drug supplement to Medicare. We were surprised that it is considered a Tier 3 drug, Tier 4 is the highest....yeow!
I wanted to share a little about Ibrutinib. Don't take this as gospel beause in my research I can't be exact. I am pretty sure though that we read or heard that Ibrutinib is still in clinical trials for B-cell lymphomas. About a month ago it was also FDA approved for Chronic Leukocytic (sp) Leukemia. We listened to a Webinar (thank you Roquie for alerting us on that). It was a talk by Dr. Brad Kahl from the Univ of Wisconsin. He also was on the research team with Bill's Stanford doctor. I have been monitoring his work since Bill was diagnosed and he is one of the doctors besides the 2 German ones that Bill emailed about an SCT. His talk was very informative . It has not become available on the LLS site yet but I am sure it will. Even though it is about MCL, it is very educating about B-Cell lymphomas and the new targeting drugs. One of the nurses at our cc told us that these type of drugs are a real break through and the thinking is that one day they will take the place of many chemo regimes. After Dr. Kahl's talk, it was open to quesions, one woman said that her husband relapsed from MCL with some cancerous lumps on the back of his head and after taking Ibrutinib for 5 days they were gone. She asked Dr Kahl if the Ibrutinib kills the cancer cells or does it keep them from reproducing. There was a few seconds of silence and in a low voice Dr Kahl said "it kills them" She then asked if it could get rid of the lumps on the back of his head in 5 days, again a pause and he said "yes".....nothing more, it was chilling. We just wanted to share that because we feel there is some real hope out there.
We hope this brightens your weekend a little, our best to you, Bill & Becky