Bad news good news
Sunset from Dallas Road.
You all have heard that old anecdote about what doctors may say: "I have bad news and good news."
Well on September 20th I met with a replacement haematologist who pretty much repeated that expression in content.
My latest blood work shows that my WBC (white blood cells) and ALC (lymphocytes) are now doubling again. Furthermore my platelets are also still below normal.
The specialist started the conversation with "have you seen your CT scan results?" Which of course I have not. Have you ever tried to get results sooner than or at the same time your dr. gets them? The hospitals generally treat you paternalistically (like an infant) and go out of their way to make it difficult and complicated to get them. But I digress. The dr. said "you have a mass of lymph nodes about 10 cm in diameter in your a abdomen!"
He went on to declare that the chemo, FR (see my previous posts for an explanation) has failed. My disease is resistant to it. Some of you may recall I discussed that I had genetic testing (FISH) that based upon certain deletions of parts of the diseased cells (11q) predicted that I would not respond well to traditional chemo. He based his opinion on the size of my lymph nodes and the blood work. Furthermore he determined that my marrow had been impacted by Fludarabine (the F in FR) to the extend that I now had lower than normal platelets. This was either a reaction (side effect) or a new condition where the marrow is not able to produce enough. In any event he was of the view that it would be necessary to continue treatment but that it was "too dangerous to continue with FR."
I put those words in quotations because they are the magic words which trigger medicare's approval of a new really sexy and very expensive drug; Ibrutinib. The drug essentially starves the cancerous cells and they die. It has some serious but not common side effects and must be taken indefinitely. Yes forever or for as long as it works. There are other limited options. The most viable would be to try a few cycles of Bendamustine and Rituximab and see what happens. Bendamustine is another DNA disrupter invented in the 1960's in East Germany because it was very inexpensive. Apart from the side effects (and there are many) there is a risk of "changing the biology" of the disease. In other words it can mutate to becoming resistant to any other forms of chemo. So I have a few weeks to think about it but I am pretty confident that I will go with Ibrutinb and hope that it works at least long enough until there is "something else." Right now in Canada, that would only be a transplant. I have talked about how risky that is. Here's some practical information about the day to day issues with Ibrutinib.
At least I would be "back in the race" and have a shiny new drug. I am seeing another specialist in October and then decisions will be made and treatment may continue. I will update my blog at that point. So until then thanks for joining me!
