Monday, September 20, 2010

Battles Plans and Marching Orders

An internet friend with CLL and and a MD degree like me wrote to ask: so what is your plan?

This is my answer. Notice how it is all about CLL. ITP is for now in the background.

Here's my rough plan:

Staying on cyclosporine (CSP), but I am hoping to reduce the dose when I finish most of my travels in early Dec.

I am planning more rituximab, but my bone marrow biopsy (BMB) is first, this Wednesday with Kipps.

Clearly the response to rituximab is dose related. I would prefer to get 2,250 mg/M2 in a single dose as was done in O'Brien's trial of mono therapy, but short of that I will get 6 weeks of 375mg/M2. Clearly I am sensitive to it in combo with CSP.

If all stays good, then repeat another 6 weeks of R, than a CT and BMB 2 months later, so about in 6 months.

If my nodes are down more, just stay on a lower dose of CSP, and then probably FCR or BR to get a deeper remission and to wipe out the T cells and immediately onto transplant- likely using the same donor or one of his sibs if they agree and match. I have no other good options at this time. Likely at City of Hope (CoH) again.

If they are bigger, maybe lenalidamide + R or O to shrink them, then FCR or BR, then transplant.

I will see what Dr. Kanti Ray says when I see him in November. He likes DCR and that might also figure in.

I know Kipps is against more R, and Forman at CoH and my local oncologist like it.

My concern is that I need to go to transplant with as little disease as possible, and definitely with nodes less than 5 cm.

1: See how much deeper a remission can I get with more R
2: Not do too much while I will traveling all over this fall and early winter
3: Not blow a chance at a 2nd transplant by waiting too long. Big nodes scare me

Frankly, I don't see anything that is going to significantly help younger patients like us getting into our hands in the next few years, so I don't buy this treating CLL as a chronic disease patter from Furman and Kipps.

What do you think of my plan?

He wrote back (I made some small changes to hide his identity):

Your plan makes a lot of sense. I had planned to proceed to HSCT when the time came (I have a good match), but lately have felt a bit more reticent, given my horrendous journey after attempting FCR and the poor course of several people who have been posting about their recent transplants. I really don't know what I'll do when push comes to upcoming CT scan may influence how I proceed. My biggest concern is lack of data showing fantastic results beyond 2 or 3 years (or am I missing something?). If the upside were higher (more certainty of cure if you hurdle the first few months) I think that I'd be more certain of which path to take.

I wrote back:

There are no great answers.

Here's why I still prefer HSCT

A significant minority of transplants patients seem to do very well long term. The mortality curve is pretty shallow, but not flat after 5 years. Seems the important thing is try to join that select group by improving your odds going in: low disease burden, no co-morbid issues, and a good match.

On the other side without transplant, even if you get all the best therapies and pick the right trials, almost no-one with 11q does well after 7 years or so, especially if you are unmutated. Maybe that will change, but it hasn't yet.

So that's my story and I'm sticking to it.

For now. It could of course all change on a shekel.

More R, then more real chemotherapy as needed to get disease way down and beat back my T cells then a redo transplant next summer. Engraftment. DLIs as needed. GVL, GVHD, but manageable. GVHD burns out after a year or so. Vigilance forever. Big party on my 95th birthday.

What could be easier?

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Anonymous Anonymous said...

I read you comments and admire your knowledge and attempt to logically work your way through your options. I must admit I sit here at 62, having been treated with FC once, and have no idea what I should do next. vjw

September 21, 2010 at 9:20 AM  
Anonymous Anonymous said...

ok, again, any comment on AlloStim, developed through Immunovative therapies Ltd.

and currently in clinical trials for CLL?

The premise seems very interesting as alternative to BMTs.

September 21, 2010 at 12:46 PM  
Anonymous Anonymous said...

Don't know where you get the idea that Kipps sees CLL as a chronic disease, to be treated palliatively. I mentioned Rick Furman's recent paper where he argues against going for a deep remission (because CLL patients always fall out of remission anyways) and treating CLL as a chronic disease (which makes a lot of sense to me); he disagreed with me and said that he is going for a cure.

Right now, of course, there is no cure.

Your argument that no one with 11q lives past seven years is troubling to me; I've lived with the 11q for five years or so, and probably had it years earlier.

So I guess I have only two years left. If I live even that long.

September 29, 2010 at 9:42 AM  
Blogger Brian Koffman said...

Excellent and clarifying comments

Kipps does want to cure CLL, but he also wants to keep his powder dry, avoid toxic therapies so the patient can fight again and again and again, until he finds the cure. That is why I state he is fighting this like a chronic condition

Of course many many with 11q del live much much longer than 7 years. The median is not the message, but it is important to know the stats, and then to improve them or prove them wrong.

September 30, 2010 at 8:22 PM  

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