Saturday, January 19, 2008

I’m doing chemo now, Part 3: The results

Well, the results are in from the R+CVP, which became R+CP after my fingers started to tingle and my vision started to blur . . .

The overriding goal of stopping the severe hemolysis, which in October had taken me on a trip that was a little too close to death’s door for comfort, was accomplished. As readers will recall, this hemolysis, or destruction of red blo
od cells, was caused by autoimmune hemolytic anemia, or AIHA. That condition is a result of my immune system having deteriorated into some kind of Keystone Cops routine thanks to all those CLL cells sending out silly messages.

My hemoglobin re
covered from 6.7 to around 12, where it has stayed for the past six weeks. Hematocrit is in the mid-30s. Overall red blood count is in the 3.5 range. While none of these qualify as a return to normal, they do represent enough of a rebound that I feel pretty energetic. My body seems to have adapted to this “new normal” in my red counts, rendering me as active as I used to be, more or less. (It’s not like I ran marathons.) Now, if I were suddenly to find myself in the normal range, I’d probably feel that much more energy, but at this point it could be said that I don’t know what I’m missing. And given how bad things had gotten -- imagine being unable to bend over to put a dish in the dishwasher -- things are “normal” now by comparison.

The other pretty big success in the treatment was the reduction of lymph nodes. The swelling in my neck and under my arms is, quite simply, gone. My spleen is so petite that, if it were not for something of a pot belly and a little gender issue, I could compete in the Miss America contest. The only holdout nodes I detect are in the abdominal area, which are often the hardest to get rid of, especially in an 11q-delet
ed patient like me. However, even the mass of nodes on my left side (the “abominable lymph node”) is well reduced, not too noticeable, and no longer painful.

On the downside, two things didn’t work as well as I’d hoped:

One, the absolute lymphocyte count bottomed out in the low 20s, which means that I have a good number of CLL cells resistant to Rituxan and cyclophosphamide. (And god knows what else, but I’d prefer not to think about it.) Fortunate
ly, the count has been stable for the past couple of months.

Two, I never converted to Coombs negativity, which was my not-so-secret desire in all this. Such a conversion would presage a longer remission from the AIHA. However, as Dr. Clive Zent of the Mayo Clinic pointed out to me, the goal of treatment is to control the hemolysis and not subject the patient to any more chemo toxicity than necessary. My hem/onc felt that after three cycles of R+C(V)P, we had accomplished that basic goal and were showing no signs of improving on things any further. I agreed, and that regimen will be held in reserve if I should begin another severe relapse.


It is living with that possibility that qualifies as the newest “new normal” that I have to adapt to. As Dr. Zent also pointed out, patients with AIHA seldom get rid of it. T
here is nothing I’d rather be rid of more, of course. Wrapping my head around the idea that it could return after such a “big” treatment is taking some doing. But experience teaches, and having a hem/onc who recognizes the severity of the problem also helps. So I am doubly vigilant, and that much more prepared, at any sign of trouble. (The monthly CBC has now become bi-weekly, for example.)

For now, I am continuing on steroids, currently at 12 mg of methylpred
nisolone daily, with the goal to go even lower. We will add in some periodic low-dose Rituxan, based on my experience with it last spring, in which it was able to control hemolysis when I was off the steroids. IVIg, another anti-hemolysis tool, will also be in the works as my Immunoglobulin G has now fallen below 300 for the first time. I am amazed that I have not come down with an infection, but perhaps I have more reserve immunity than the numbers would indicate. And we have been careful. Marilyn caught a bad cold and wore a surgical mask around the house while she had it, and she washed her hands constantly. Alas, no smooching, and I owe her a big one for taking such pains to keep me from getting sick. (Of course, we patients owe our caregivers not just a kiss but the world.)

As to the tingling fingers (peripheral neuropathy), they are slowly returning to normal. The blurred vision resolved after a few weeks. All this means I can use vincristine again in the future, albeit in very small doses. Had I been able to tolerate it better, it is possible I would have gotten a deeper and better remission, but those are the breaks in chemoland.

In the meantime, since I am in remission, I am t
rying to enjoy that aspect of it. The “new normal” has its rewards. This is a comparative “rest period” as opposed to the manic “what do we do/time to see another doctor/yes, I have good veins and you can use any one you want” period that accompanied my AIHA backslide in October.

Ultimately, though, my continuing AIHA saga, not to mention the rock-bottom immunoglobulins, illustrates that my immune syst
em is pretty much shot. A stem cell transplant is becoming all the more necessary, and the time frame for it is no longer “some day” but more likely within the next two to three years. Investigating that course is now front and center in my ongoing CLL education.

As Roseanne Rosannadanna said, “It’s always some
thing.”

5 comments:

Anonymous said...

I'm wondering why you'd want to wait a couple of years before doing the transplant. Aren't transplant usually done in the first or second remission?

David Arenson said...

There are a number of issues at work in terms of the timing.

One, I don't know how long this remission will last.

Two, I am reserving fludarabine and Campath for transplant, and this may allow me the "luxury" of using R-C(V)P again without noticeably reducing my chances of transplant success. So if this remission lasts X long and I do more R-C(V)P and it lasts X long, we could be talking a reasonable amount of time with decent quality of life.

Third, there are umpteen issues I need to pin down when it comes to 1) insurance, and 2) the mechanics of transplant, the latter being mainly this: Is there a 10/10 match out there for me? Just because I have 22 6/6 matches at low resolution does not mean there is an adequate match (10/10 or 9/10) at high resolution.

I am currently trying to pin down the match question and am laying the groundwork for new insurance. I'm not sure how it will all work out, but I expect some big changes in store for my life in 2008.

Anonymous said...

Well, I just worry about you in your situation. Neither you nor I have the luxury anymore of a lot of time, sad to say.

One indication of that (for me at least) is that your doc wants to see you more and more frequently.

First it was once a year, then every six months, then every three months, now it's down to every six weeks.

I can read the handwriting on the wall, even though I still feel pretty good.

You obviously have your own feelings about the doc question.

Phil said...

David,
I have followed your situation for the past 18 months, and have categorised you in my own mind as a superb strategic planner.
Even though it may not be possible to get it 100% right, there is always some contingency in life, and the valiant struggles of both body and mind.
All the best for 2008 brother, and a big thanks for helping me keep my own thinking on its toes.

David Arenson said...

Thanks, Phil. Not sure I qualify as a "superb" strategic planner, but I am a strategic planner. That's the only way I see myself getting out of this mess.

As to the previous commenter, there are any number of other "warning signs" that trump frequency of doctor visits. I'd keep track of the trajectory of my hemoglobin and platelets, increases in lymph node size, and frequency of infections. That and a periodic FISH test to keep abreast of clonal evolution.

I do agree that I don't have the luxury of time that I had a couple of years ago -- which is why I am looking more seriously at transplant, which I hope will buy me more of that luxurious time.