Saturday, June 23, 2012

Black thumbs, passing arms, and high fevers

Time for an update, as the saga drags on.

I have a new theory, which I'll call Dave's Black Thumb. It goes like this: If there is a doctor in Arizona that I like, they will eventually leave their practice and probably the state.

The first to go, in 2006, was Dr. Susan Partyka, known as "Dr. Chopin" in the blog. In January of this year it was Dr. Lesley Meng ("Dr. Belle.")

Which brings us to the present. Earlier this year, when Dr. Meng left, I found a new oncologist, but I also found another doctor to consult with who was conducting some interesting clinical trials of kinase inhibitors. This was Dr. Daruka Mahadevan at the University of Arizona Cancer Center in Tucson. (I paid out of pocket for to see him because my insurer, Merciless Healthcare Group, doesn't cover either of the state's preeminent cancer centers, the other being Mayo Clinic in Scottsdale.) Dr. Mahadevan was UA's CLL guy, and we hit it off immediately. He's smart, an honest arbiter of treatments, showed a willingness to fight for his patients, and was worth the $500. And now he, too, has flown the coop and departed the state for points unknown.

This means the reset button has been pressed, and now I need to see a new doctor in Tucson, who will be the new investigator for the one remaining trial (AVL-292) they expect to open "in a few more weeks." If I had a quarter for every time I have been told "a few more weeks" I really could buy a cup of coffee. (My last post went into problems with the trial that would have been the first choice, ABT-199.)   

I can't wait forever

Keep in mind that my disease has become much worse since last November and that I needed treatment in January, really. My hemoglobin has plateaued at about 9.2, which is just enough to get me around but not enough to do any meaningful physical activity. I think twice before walking up the stairs, for example. I tire easily and need to sleep more than usual.

My new local onc, who I think I'm going to call "Dr. Droll" because he has a dry sense of humor, has kept me going during this trial search with huge doses of pulsed steroids, which is a stop-gap of limited usefulness, not any kind of solution. This involves taking 40 mg of dexamethasone for four days every ten days, ostensibly. (I do it about every three weeks, when I feel baseballs forming under my arms again.) This regimen is used on myeloma patients. When I saw him recently and mentioned how much I hated the steroid regimen, his comment was "They don't clamor for it." 

The platelets dropped to 85 at one point but thanks to the steroids have been hanging around 120. The lymph nodes have gotten worse than ever (though surprisingly my spleen is almost petite). Left unchecked for awhile, the nodes clump together in masses under my arms and in my abdomen. The steroids knock them back some, then they bounce back after a few weeks. It's clear that my marrow is impacted and that the nodes need attention.

Dr. Mahadevan's suggestion for a conventional treatment was bendamustine-rituximab. Dr. Droll has the same point of view. Mahadevan said he "wouldn't give me fludarabine with a 10-foot-pole" because of my history of AIHA. I am not overenthused about bendamustine, but I do see the logic and it is less myelosuppressive than fludarabine. Either can lead to such lovely conditions as Richter's Transformation, and I have a lot of deep abdominal nodes.

It is exactly because the kinase inhibitors can do an excellent job of shrinking the nodes with much less toxicity that I have held on this long to search for a trial. But how long is it safe to continue waiting to get into one while taking enough steroids to revive the dead?

Which brings us to the Hail Mary pass I have thrown, which may result in some good news, and which may not, and I won't know until mid-July. I'm going somewhere a little further afield than Tucson, and I'll see what happens there.

But the window on this is closing; no trial soon = bendamustine-rituximab.

104 degrees

And I don't mean the weather. I have just finished a week, most of it spent in bed, with fevers that ranged from 99 to 104. Besides fever, the main symptom was exhaustion. My lymph nodes did not swell up beyond their already swollen point, which is usually what happens when I have a cold or flu. In a CLLer with limited immunity a fever of 104 is not a good sign. Marilyn wrapped me in an electric blanket and stuffed me under the comforter and we agreed that if it was not down within an hour, it was off to the ER. But it dropped, and I stayed home.

The good news is I got over It, whatever It was. The fever began while I was continuing on prophylactic meds for the steroids, although I was off the steroids, but the Bactrim, Augmentin, Fluconazole, and Acyclovir did not prevent It nor cure It. My own immune system overcame It, which is a very good sign.

And that's where things stand. I'll update you in a month.


Brian Koffman said...


AVL-292 looks promising in the lab and there is every reason to believe it will work amazingly well in patients such as you.

I wonder if your Hail Mary pass might be to a receiver at OSU or the NIH. Columbus is opening another ibrutinib trial. I moved there for 3 months to get the magic pill. NIH is still accepting patients for the same (though you are put on a waiting list that is slowly being worked through) but you must be 17 p del or >65 years old.

Stay strong.

We are all in this together. Let's try to connect next time I am in Tuscon.

Brian (

Anonymous said...

When I was first diagnosed in 2004, I found a local expert new home (John Sweetenham). Before I could contact him, he moved to U of AZ but lasted only 1 year before moving to the Cleveland Clinic. It seems mobility is a fact of life for physicians in your area.
As to your treatments, I just finished three rounds of single agent bendamustine. Treatment was triggered by enlarged abdominal nodes like yours. Rituxan was not used due to a prior case of Rituxan induced neutropenia. My response was atypical: very strong with only a low CD4 residual side effect. However, unlike you, I have good markers which may have influenced the response. I hope by my next treatment the kinase inhibitors will be available as they look quite good at this point.
Be well, TomD

Anonymous said...

Gee, I've only had five different oncologists so far: two moved away, two retired. It's not easy emotionally when someone you're working with leaves. However, my one doctor's moving away probably saved my life. At first diagnosis I had been put into remission with Fludarabine, then went back into the crapper after two years. The new doctor I had to see recommended I do the Fludarabine again, and I went through one cycle. Then he moved away and I went to a new practice. When my new guy saw I was on Fludarabine again he hit the roof. He said it would put me at too much risk for potentially fatal anemia. He started me on Rituxin. That was thirteen years ago and I've been (macroscopically) disease-free since.

You just never know when something that seems bad turns out good (and, unfortunately, the reverse).