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More bad news!

While it appears my absolute lymphocyte count has stabilized, that is the only bit of good news.

First it was my platelet count dropping about 10% to 195 thou/mcl (the lowest it's ever been), then it was my Lactate Dehydrogenase (LDH) rising to 141 IU/L (the highest it's been), and now my Beta 2 Microglobulin (B2M) rose to 2.98 mg/L.

At least the platelets and LDH are still within the normal range, but that is not the case for my B2M. The lab didn't report the reference range, but I know 2.98 mg/l is getting up there, and is well above normal.

I'm sure very few, reading this post, have any idea of the significance of these three tests, so to simplify, I'll just state they are an indication of disease progression.

The only question now is what to do? I'm still feeling fine, and certainly don't want to begin treatment any time soon. There are too many other things going on, including worrying about Edie, and how her treatments are going. But at the same time I don't want to wait too long, when it may be too late.

And on top of all that, my golf game sucks.

BIG SIGH!

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Monica Gambrill said…
I'm sorry, Marc, to hear that the mcl seems to be progressing. I identify completely with your case since I have no tumors either but am beginning to get anemic. The Dr. just did the same tests you mentioned on me but I haven't been back for the results yet. I too have spent the last year studying all the possibly treatments for mcl but without having had to do any treatment yet. Not that they haven't recommended chemo but I have refused. What I did do was the hla testinng for my five siblings plus my own: the results were negative. It seemed to me that the best thing, had I had a sibling donar, would be to try to get a tandem transplant, Dana Farber style, with the heavy duty chemo and the auto stem cell transplant to get rid of all disease, and then just as I was feeling strongest, go for the allo in order to make sure nothing came back. I know that's easier said than done, but it was what made most sense to me. You zap yourself but knowing that you will recover from it, because the auto will rescue you; and then the allo when you can best resist it. None of this stupid chemo that gives six to ten months remission, that just makes youu older and weaker when you finally opt for the transplant. Kind of an all or nothing approach, although I would have accepted a Rituximab treatment beforehand, with the idea of doing the transplant two years out... just as I turned 60. Anyway, I tell you all this because it might help you think about what you want to do. I don't know when your wife will be back to feeling well again, but perhaps meanwhile you could do the Rituximab. I know you found all sorts of precautionary warnings and studies about complications, but I believe it is the best place to start. Then plan for something else a couple of years down the road. There is a clinical trial opening in NIH for allo stem cell transplants with sibling donars for CLL; maybe they would let someone with mcl in. About your counts, it's interesting that you don't make any mention your erithocytes; everything normal on that front? Anyway, I wish you well and send my best to Edie.
8:41 AM
Marc said…
Thanks for the thoughts Monica.

Personally I don't think a transplant is the best way to go, at least not as first line treatment, especially an allo because of high mortality rates due to GVHD. But as a last resort, definitely.

But if that's what you want to do as front line treatment, don't let the fact that you don't have any siblings, that are a match, hold you back.

In fact, a transplants with matched unrelated donors (MUD), produce better results. At least according to Owen A O'Connor at MSK.

I know I was surprised too, but having discussed the topic of transplants over on the mulitple myeloma listserve, I have learned it is important to have GVHD.

GVHD is the signal that the graft is taking hold. In other words what we fear the most about a transplant is the same thing that almost guarantees a cure.

And siblings, since they have likely been exposed to many of the same outside influences as you have, may actually not recognize the cancer as foreign.

(Dr. O'Conner does a presentation on Emerging New Strategies in the treatment of MCL, which is well worth listening to.)

Oh, and as far as my hemoglobin it has been hovering between 12 and 13 (reference range 14 to 18) for just over a year now. I don't worry about it too much, as I am still active, and not experiencing any significant problems because of it.

Besides the reference range for women is 12 to 16 so as long as I can beat the girls I ride with (on my bike that is), or at least not get dropped by them (that's cycling jargon), I can live with that. I'm not that proud. :)

It is the platelet count that is the most important marker to watch.

Oh, and please let me know if you received notification of this post via email. I have a feeling my "subscribe to comments" plug in isn't working properly.
9:43 AM
Jennifer said…
Hi Marc,
sorry you are getting nearer to decission time.My platelets had dropped to 85 when I had my spleen removed and the WBC was 77.I have been doing Robert Millers strategies for the last 5years or so, plus more of my own. At the last onc visit my WBC count had gone down to 25. All he could say was strange very strange.
Anyway all the best to you and Edie hope you make the right decision.
Jennifer
7:12 AM
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