Tuesday, December 1, 2009

Tough Stuff

I have dallied in the anterooms long enough. I have admired the columns and the graceful arches from the outside. More than that, I have peaked inside the temple's gold plated doors. The time had come, if not to enter the holy of holies, at least to walk into the inner sanctum where decisions are made that effect, well, everything.

The temple is standing on the rock, constructed again in its sunny detailed glory, at least in my mind's eye as a place of action, and if I choose right and G-d is merciful, a physical connection with a long and fruitful future.

I see two very distinct paths ahead of me.

The first is to avoid the toxic alley of purine analogs (Fludarabine or Pentastatin) and alkylating agents like cyclophosphamide and all their sequelae of infections and marrow suppression and secondary cancers and perhaps a rebound of a nastier clone of my own CLL nemesis.

The crazy thinking goes like this: CLL expert, Dr. Susan O'Brien said if you need treatment for CLL, you will die of CLL, so if you put off real treatment like FCR, you put off your own mortality.

I wish it were so. What she said is that if you need treatment, not if you get treatment.

Nevertheless, it make good sense to avoid toxicity, especially with my platelets being destroyed at such a fast clip in the periphery. I don't want to suppress the marrow, the source of all things platelet with chemo. If I suppress production with my treatment meds, and they don't do their intended task of decreasing tumor burden and thereby rapidly turning off the increased consumption, I am headed for a nasty bruising, and I am not being metaphorical here. Moreover F is associated with some very nasty ITP on its own, and is known to muck up the T-regs. My go-to-guru, Dr Rai is adamant. He would never use FCR on me because of the risk of life threatening ITP. BTW, one of the 300+ abstracts I reviewed from ASH, suggests P might be a safe choice, at least in the test tube. And the combo of either F or P with C + R is for sure safer.

But I have to do something. Today's good news of a platelet count of 228,000 suggests I still have some time to decide.

The most appealing option seems to be HDMP+R. Lots of advantages. Its master practitioner is my own Dr. Kipps who is the may be the world's most experienced doctor with this powerful non-myelo-suppressive, non-mutagenic option. Infections are the big risk and have caused too many deaths, but the protocol has been ratcheted down, so now they can usually be avoided, and at worst, treated. Again other heroes have paid with their lives so those following have a safer path.

HDMP+R doesn't usually clean out the marrow. To get that, you need a Campath chaser, and that is a high risk decision. Too many deaths from infection.

Since it is a steroid treatment, it should work great for the ITP, but that is yet to be proven.

Revlimid and Rituxan is another attractive option. Great with the nodes. Relatively non-toxic, especially for someone like me with a lower tumor burden though it may not be great in the marrow. And it can be hard on the platelets and the neutrophils. And it is very new. Works slowly and often gets better with time. I like that. This may be the drug of the future, but is it the drug of now? Maybe, I need to dig more.

SYK inhibitors may help both ITP and CLL. But I am talking real Phase 1 stuff here, and doubt I would qualify for a trial. This is a very exciting research for someone like me.

Same issues with Cal 101 or Tru-016. And their results with ITP are really unknown territory.

Bendamustine? Myelo-suppressive, probably safe in in ITP, but why use a alkylating agent.

Ofatuzamab? Promising, but rituximab has the track record in ITP, so it might be hard to get the doctors and insurance to agree.

High dose rituximab- One ASH abstract had doses escalated to a whopping 3 gm/M2 with good results. That is real tempting, but who is going to pay for that outside of a trial.

I need to review the papers and maybe contact the PIs (principal investigators) but of the choices above HDMP+R seems the most sensible and feasible and it is local to boot.

If I choice path one.

But...

What if I do go high risk? What if I decide to race down that toxic speedway on my way to a cure, with the obligatory long pit stop and oil change at the transplant center.

Those who have traveled this far with me, know that is my true inclination, but is it my Evil (yatzer hara) or Good (yatzer tov) inclination?

More on that later. Chemo combo with a MAB (think FCR or PCR), then a redo transplant?

I am writing from the infusion center and I need to rest.

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2 Comments:

Blogger Alison said...

Good luck, Brian. Take all advice, have a think, think some more - but I know it must be impossibly difficult to decide.

December 1, 2009 at 7:03 PM  
Anonymous Linda Morse said...

Dr K,
In the 17+ years you were my doctor there was something I could always count on even when we crossed horns: your vast knowledge and your diagnostic skills. I learned to trust that very quickly. You would study something if you felt you didn't know enough and and I could always count on you for the best treatment. I understand that your burden is critical and that you need to cross all your T's and dot all your I's. All I want to do is suggest that you trust in yourself. In stillness, listen to your secret heart, and be bold enough to trust yourself to make the right decision. You can do this, I know.
Linda

December 1, 2009 at 7:59 PM  

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