Tuesday, August 25, 2009

Holding Steady

Not much change in "the numbers" from last week. IGGs are 3500 (3470 last week); white count 2.8, down from 3.9 (but the more important neutrafils are 2.4--a good number), red count and platelets a bit down from last week. Rifkin thinks the steroids are keeping me in some sort of holding pattern, which in his view is good, as it is giving my bone marrow more time to heal. He prefers to keep me off any treatment (other than steroids) for as long as possible. He also is not currently too fond of either of Dr. Barlogie's suggestions (carfilzomib and pomalidomide) as they both have myelosuppressive characteristics, meaning they can drive down the white and red cells and platelets. Since mine are down already, he doesn't want to harm them any more. I'm also unlikely to qualify for the carfilzomib trial because of my extensive chemo treatment. No word on whether I'm eligible for the pomalidomide trial.

We had a rather sobering conversation about his view that I likely have suffered permanent injury to my bone marrow from the Arkansas chemo regimes and that injury has limited my treatment options. I've discussed this "bet the company" approach in previous posts so I won't repeat it here. On the drive home I felt forced to review with Susan one more time our discussion with Dr. B regarding whether the "super beam plus" chemo would limit my future treatment and she, like me, remembers him being very clear that I would not have any future limitations, other than I could not ever again receive the "super beam" treatment. It's difficult not to get angry about this situation, but I know it is not healthy to go to that place in my mind, so I'm getting pretty good at staying away from it, until it comes up in my treatment discussions with Rifkin. Please understand that Rifkin does not volunteer his views, but offers them only after much pushing, prodding and questioning by me. I'm always trying to find out what new drugs are on the horizon and might be available to me, and I keep running into these barriers created by the Arkansas experience, like your bone marrow can't withstand that kind of treatment. The picture has changed signficantly since the "super beam", and needless to say that becomes very frustrating. Catherine went ballistic last night when she learned the extent of the problem and the limits to what can be done for me now.

That being said, let me say that I continue to be the optimist. I certainly feel better than I did 4 months ago, although I feel like I've reached a plateau of sorts, i.e., I'm not getting any worse, but my efforts at restoring my strength and muscle only seem to keep me treading water. I think this is due to the muscle wasting feature of the steroids. At some point we'll have to start trying to reduce the cancer levels. When that decision is made there are 2 potential drugs that aren't myelosuppressive--thalidomide and HSP-90. Thalidomide is available, HSP-90 is not currently available. HSP-90 is a better drug since it has very few, if any, side effects, but apparently the manufacturer didn't make enough of it to produce more after the completion of the clinical trials.

A few weeks ago I completed my "service" as president of the Colorado Trial Lawyers Ass'n and am now officially a past president. Although I tried to resign 3 times over the past 5 years (all of which were rejected by my fellow officers), and I only served as president for a couple of meetings, the association was extremely generous in thanking me for my service and bestowed its thanks to me in the form of a new, lighter bike. I am completely undeserving of such thanks, but am so proud to have been able to serve as president, even if for only a short amount of time. Our many trial lawyer friends have been so generous and supportive. I do wish the American public would hear more of these kinds of stories, showing what big hearts trial lawyers have, instead of the lawyer bashing that seems so popular these days. This comment is certainly not intended to diminish all the support we have received from our family and nonlawyer friends. My point is only that as a group, the trial lawyers have come forth to assist one of their own, even though, for many of them, I may have been more of a professional acquaintenance than a close friend. Of course, now they are all my close friends.

The best news of the week? Rifkin gave me a 2 week break from my clinic visits. No sticks, pokes, or blood draws!
With much gratitude and love,


Ingrid said...

Well, for sure the last paragraph was the nicest to read for a long time.
Enjoy those two weeks, they will help you regain muscle strenght and faith, two nouns that seem to get kind of lost in this post, and God only knows how well I understand your feelings.
Big hug,

Brother Ted said...

My dear friend, there are indeed legions behind you and it is wonderful to hear how your peers have supported you these last few years. The Arkansas experience sure has been a let down. It is hard to think that you were an experiment that just didn't go as planned. I think it is hard because there were such high hopes that the myeloma could be knocked on its butt. Instead it knocked you down, but not for the 10 count. Enjoy the next couple of weeks.

John said...

Just a note on my experience with thalidomide. I took it for five months along with dex. Depending on the dosage, it might not be too taxing. I managed to work full time during the treatment with thal/dex.

At 200 mg daily and 40 mg of dex once a week, the side effects were sleepiness, constipation, and peripheral neuropathy in my feet. It did reduce the M-spike from 4.6 to 0.7.

Nick said...

Dan -

I'm very sorry to hear of the situation with your marrow post-carpet bombing. I was going to mention the two new classes of drugs that I recently heard Ken Anderson at Dana Farber (he is the superstar of the non-transplant faction among MM docs). One class of drugs are heat-shock proteins (sounds like HSP-90 is one of these) and another is HDAC inhibitors. Not sure if the latter are in trials yet but they will be soon.

I am having breakfast in a couple of weeks with Kathy Giusti of the MMRF and I hope to discuss potentially joining their board. That would give me a birdseye view of all new pharmaceutical developments. In any case, if I can help in any way, please let me know. As you know, the pace of development in medicine provides a lot of reason for optimism. You may be stuck in "control the disease" mode for now, rather than eradication mode, but new treatments will be forthcoming.

You, Susan and your family are always in our thoughts -- be well, my friend.