In, and out, of the hospital

A week and a half ago, I was beset by vomiting and nausea. I was initially sick to my stomach. My wife helpfully suggested that if I just throw up, then it would be over, and I could get back to sleep.

Big mistake! I did force myself to throw up, but then I couldn't stop. I also couldn't keep even a tiny sip of water down. I would vomit more fluids than I was taking in. Obviously, that is dangerous. I was rapidly becoming dehydrated. So at 7 am I went to the hospital's emergency department.

Well, they solved the immediate problem by giving me fluids intravenously, which I expected, and by giving me IV Zofran and Atavin, which makes sense, and then by admitting me, which I did not expect, nor want. They did so because my absolute neutrophil count was at zero, again.

This was a surprise and a disappointment, especially since I had a neulasta shot a week before that. It apparently made no difference, for reasons I will discuss later.

So I spent the next five days in the hospital. This being the US, I had just one roommate. (In the UK, there are up to six patients to a room, even those dying of cancer or heart disease.) He had had pneumonia for three months, and was in the hospital for those three months. He was released while I was there, and I'm sure he was happy he got out.

After my roommate left, I had the room to myself, which was nice. No sharing of the bathroom, nor sharing his germs with me, especially with no neutrophils.

After some manipulation, my counts did begin to rise, sufficient to get me out of the joint. I never really exhibited any signs of illness after that first terrible day. My lungs were clear, apparently, with no fluid in them. But I did get Netflix to work, and I watched some cool History channel programs on military history. Nice. But boring.

Except...for the bone marrow biopsy they wanted to do. Actually, the two they ended up doing.

UC Davis, where I was, is a 'teaching hospital'. Meaning that they take people off the street, give them a few lectures, and then a scalpel, and turn them loose on unsuspecting patients.

The first biopsy was excruciatingly painful. I mean this must be what operations were like a thousand years ago, except without the alcohol making you drunk enough to deal with the pain. And what pain! Apparently this woman (girl) junior doctor decided to go into my bone from weird place (the real doctor told me that he 'wouldn't have chosen that spot to do the biopsy', which is medical-speak for 'what the hell was this woman (girl) doing????). All I know was I was screaming in pain, telling the woman (girl) that I couldn't stand the pain. She then said, and I quote, they could go get someone who had done biopsies before. I said, of course, THEN DO IT!!!

This new woman (girl) did an OK job, though it was still painful.

These two biopsies made number 19 and 20. Is this some sort of record? The kind of record you don't want to have, ever?

My marrow turned out OK. I just have CLL. That's a big relief!

So, they let me go.

Now, what about my neutrophils? Did I have a zero count? How could I survive without being sick if I had no neutrophils???

My neutrophils may be hiding in the tissues, as Dr. Kipps has surmised. The CAL-101 pushes lymphocytes out of the lymph nodes and back into circulation. In my situation, the neutrophils are there, and are being produced (as the biopsy shows), but they just aren't getting into circulation in decent numbers. But, they apparently are there. I don't understand it, and I don't know if anyone understands what is going on, really.

It IS troubling that the Neulasta did not raise my neutrophil levels within the week. Perhaps it was responsible for boosting the neutrophil counts while in the hospital. Perhaps it was the niacinamide I took (though that didn't work to increase the totals in the week leading up to the hospitalization). Things aren't all peachy in the health department, not by a long-shot.

But...I am out of the hospital and doing OK.

And...I'm back on CAL-101! That will ensure (at least for a while) that my WBC increases as the CLL and other lymphocytes are booted out of their happy homes in the lymph nodes, where they grow in happy little colonies, cheerfully killing their host.

I'm on a lower dose. I'm saying my prayers that my counts hold, and my liver numbers stay on track. It took a while for Stanford to get to this point (original estimate, one week off CAL-101; it took me about six weeks in actuality to get back on the drug).

Next step, GET CAL-101 APPROVED so that everyone can benefit from this drug. I think it is keeping me relatively healthy. I just hope it continues. Dr. Coutre has been very helpful in getting me on this drug, and keeping me on it. Thanks!

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.

Finished with Flavopiridol

Last Wednesday March 17th, I finished with the 24th and last treatment with flavopiridol. My side effects were the usual, nausea, one bout of vomiting, and diarrhea. I've found that if I just get the vomiting over with, I'm done and the nausea is improved. The diarrhea lasts a couple of days. Inconvenient, to say the least, especially since I have an hour and 15 minute flight back from San Diego.

I fast the day of the treatment, and eat nothing the next morning as well. I find that the vomiting is better without anything in my stomach. The vomiting is the least of the side effects, since it is over in one session. Once I throw up, it's over. I can certainly tolerate that.

The other side effect is general malaise that evening. I go to the hotel immediately after the treatment, and I go straight to bed. I have to get up and go to the bathroom several times, of course. The other problem is for about an hour and a half, I have noticeable abdominal pain that lasts about an hour and a half. I sleep on and off the rest of the night. I am wiped out the next day, and I usually go to bed early Thursday evening and sleep for 10 hours.

Is it worth all of the discomfort and the expense (I've spent about $8,500 in transportation costs to UCSD, none of which is reimbursed). I think so. I've had a partial remission, which is remarkable in a case such as mine. Without flavopiridol, I would be in big trouble by now, perhaps even gone. I suppose there are other treatments to try, but once you've failed FCR, you are in big trouble.

And, of course, everyone fails FCR, eventually. (So why do it? That is a good question, and I wish to heck I had never done FCR.)

Research has shown (in small samples, which is what clinical trials use) that about 1/2 of refractory CLL patients (such as myself) will respond in some way to flavopiridol. Responses range from nine months to just over one year. People who fall out of remission can be retreated with flavopiridol again, and most respond again with the same level of response, which is remarkable.

Would I do it again if and when I fall out of my partial remission? Yes, I suppose so. The treatment is not pleasant; but there are very few options at this point in my life, and the time away from treatment is usually pretty good. During the treatment, Wednesday (the day of treatment) and Thursday are usually just gone, I can't do anything. By Friday evening I'm feeling better; by Saturday I'm usually feeling pretty good. So I have five days a week of feeling pretty good, and two days a week of not feeling very good. But, my options are few at this point.

I thank God that there is this option for me.

I go next month for the CT scan to see how my nodes have responded. I expect to see some improvement, but no total resolution of my nodes, and certainly no cure, or even a complete response.

But, beggars can't be choosers.