Saturday, April 24, 2010

What to do next

For folks such as me, with the serious 11q deletion, eight months of flavopiridol (Alvocidib) gives, on average, a nine-to-ten month remission. That means, in total, start to finish, I'll have perhaps, on average, the need of something in 17 months, about a year and a half. (To be honest, that is pretty darn good realizing in how bad of shape I was in last July. My belly was rigid from tumor at the time.)

The question will be, what to do. The small study of flavopiridol patients show that five out of six patients who responded the first time, respond the second time, with a similar response rate, and a similar remission period. That means one might get 34 months out of flavopiridol! That's really, really good for people in my position.

Dr. Kipps has not mentioned doing flavopiridol again. And I really don't want to go through the CT scans again, just for the drug company's drug approval process. Perhaps I could ask for the drug on a compassionate basis.

He's also mentioned R&R (rituxan and revlimid) and ABT-263 as other options. Both of them have significant side effects; in the former, tumor flare syndrome, and in the latter, significant platelet destruction.

I would lean towards more flavopiridol, perhaps on the latest dosing regimen, which is three weeks on, and two weeks off. That would cut out one trip per cycle.

If I lived in San Diego, the flavopiridol would be more convenient and less costly, but I don't and it's not.

We'll have to see what Dr. Kipps says after the results of the scan and the bone marrow biopsy are in.

So how am I doing?

I'm doing OK. I am a bit concerned because my numbers aren't up as high as I'd like them, but at least I'm off Neulasta for the moment (thank God!).

I feel OK but I've developed the weird hot flashes again, which I associate with CLL because I've had them before when my numbers were really high.

My WBC is still below normal, but have come up. My platelets are at 100, which is low but not dangerously low.

Flavopiridol has given me an additional nine months, for which I am grateful.

I just can't help wondering why, since everyone relapses from flavopiridol, they don't offer it as a maintenance drug, once or if a remission is achieved.

I had a CT scan (which I hate because the radiation is so high- you get a lifetime's worth of radiation during the trial if you do all of the scans the drug company wants). What do they care, though? It's not like it's their body.

I have a bone marrow biopsy scheduled for next month. That means another trip to much-disliked San Diego. And another $200 for the flight and taxis and the like.

I mentioned my taxes last post. I did get them done (on April 15th, natch). I do get a refund of the over-withholding because of large medical bills. Not only the sheer size of my deductible, but all the travel to SD. It's in the five figures, believe it or not.

In retrospect, I could handle everything easily, the vomiting (only one bout on an empty stomach), the abdominal pains that night, and the tiredness the next day or so. It's the diarrhea that is the big problem. It resolves, but it takes a few days, and it's unpredictable and very urgent. Meaning that you don't want to be more than a couple minutes from any bathroom, at any time. Lots of gas, too.

Not a good combination.

Sanofi-Aventis needs to work on solving that problem, or they won't find many takers for Alvocidib (flavopiridol). Except for desperate patients who have started running out of options, such as me.