Saturday, April 24, 2010

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.


Greg said...

Barry, I guess the diarrhea is not the major factor if one is FCR refractory and mutated. Even in my case I did not care much about the side effects.

What I dislike is the CT scans. Why not MRI;s, do you know?

Barry B. said...

CT scan were required by the sponsor of the clinical trial, Sanofi-Aventis.

In a couple of other trials (specifically the FCR+lumiliximab trial which in my opinion was a complete bust), I was either offered an MRI as an option, or I pushed and was granted an MRI instead of a CT scan.

This wasn't the case with this pharma giant. I was discussing the issue with another drug company, this time a small one, who told me that MRIs are more expensive, and because the company was obligated to pay for them, they needed to conserve cost.

Such is not the case with Sanofi-Aventis. They are huge. And, they didn't pay for the scans anyway. They made me pay for them (through my insurance company)!!!

I'm not a big fan of Sanofi, as you can probably tell.

As you point out, once you start running out of options, diarrhea is something you can live with, however inconvenient.

Adult diapers may be one way one can manage this.

I generally didn't have a problem the next morning (which I was EXTREMELY thankful for), just the night of the treatment. However, the diarrhea did last until the third or fourth day some weeks.

But, what are you going to do? It's better than death, and better than a stem cell transplant.