Thursday, March 26, 2009

My rough thoughts

This is a rough draft of my notes to myself (and my wife), unedited and uncut to give you a sense of what goes on in my head as I try to sort out the best moves with this crazy thing called CLL.

First what do the nodes mean?

I have two growing nodes in my gut, maybe more. Other nodes are "plumper"

My CT scan shows definite growth. But is it the CLL?

Could it be nothing? Castro said it might be not important and Rai thinks it still might be fibrotic tissue that could grow.

Rai seemed to indicate the lack of any other nodes was particularly critical. At least he asked about it several times and examined me himself. Castro though that all the nodes should grow at once in CLL So does Kipps. Not Tam or Keating.

Steve Forman and the two radiologists say they are evidence of relapse. They offer nothing else to explain the change other than CLL on its way back.

Rick Furman goes in a different direction. He thinks my nodes are growing too fast for CLL and it is important to rule out PTLD, before any cytotoxic treatment. He said my disease is nodal. Acting like a lymphoma.


The next issue is the reason for the profound change in my nodes and for my bone marrow becoming and staying MRD negative after the transplant.

Castro and Rai think the T cells may have been a factor, though Rai also suspects that the chemo was definitive. He seemed to waver.

Steve Forman gave me a definite no to the transplant being any factor in my remission.It is all chemo effect. Rick Furman agrees saying that I couldn’t have formed T cells in the time the graft was aboard.

BTW, quoting Rai:” Losing the graft is bad, but it is not a death sentence” Another quote: “ I have gotten to this point remarkably unscathed” Forman:  The news is good: You did get a complete remission (with the conditioning from transplant)”


Next monitoring, testing And the PTLD question.

Steve Forman wants to treat but not too soon and not too late. Not sure his definition of either point, except that the present is too soon. He plans to follow me with CT scans every 3 months for now and slightly less frequent BMB. That could all change after the next tests in June or July. Uninterested in other markers. Also said would treat like any other CLL, when it is time to treat, which is a bit different.

Castro would wait longer on the CT: 4-6 months. Also wants to track using CLU test. Forman does not trust CLU to make a treatment decision.

Rick Furman says B2M is of no use in my case and my CoH cytogenetics are suspect due to the fact they are stimulated tests and don’t capture the CLL cells. Prefers FISH.

Rick Furman wants a work-up for PTLD including EBV PCR (VCA?), monoclonal gammapathy?, T and B cells counts and ratio, mono-spot, peripheral blood gene rearrangement, CD4/CD8 counts, and others. Would biopsy before FRC or similar treatment, even if nodes continued to grow massively. Still could be PTLD. Dr. Furman thinks my CLL is behaving like a lymphoma.

PTLD didn’t come up with the radiologists, Steve Forman, or Castro. Or BTW with Keating or Tam or the German who did study on CT or any of the ASH crowd.

Rai says there is no tests on the blood that are certain for PTLD and besides this is not behaving like PTLD. No systemic symptoms. Would avoid biopsy, too risky and besides I might treat what I find when it is not needed. Rai: “If the biopsy doesn’t kill you, the treatment might”.

Rai said I should be tested less. CT in 2 years. No BMB needed.


So the big questions: When to treat and how?

Steve Forman is pretty clear, as mentioned above. When ready, he would do FCR, followed by what Rick Furman calls a “midi” transplant: Melphalan-Flu, hopefully from the same donor (which is unusual).

Rick Furman wants to connect with Dr. David Maloney out of the Hutch and get his take on a DLI. He is not big on transplants, but seeing as I have already had one and done well, then let’s get the most out of it.  He says he doesn’t know about the whole DLI issue and aplastic anemia that Steve Forman raised.

He would do nothing now or Lenalidomide 5 mg. They are doing a trial using Lenalidomide alternating with Thalidomide. Same action, but different toxicities. Thinks it might help GVL and is great for CLL. (BTW he says never stop the acyclovir due to risk of zoster) Test including biopsy before any treatment except Lenalidomide, which he says is so benign. Better treatments in the next few years, so hold off. Not keen on redo or any transplant.

Castro is still keen on the DLI, just not yet. Says it is never too late for DLI. Not worried about aplastic anemia. Not sure the nodes mean anything. Might consider Bendamustine.

Rai would wait until I was symptomatic. Would not test. Treat when B symptoms only, then treat hard Worried I might develop MDS which is very hard to treat with more therapy or a second transplant

Doesn’t like Lenalidomide. Too new, not sure how to use. Risk of getting T cells involved in tumor flare. Dismissive of any treatment, and especially mentioned Bexar and Zevilin as I am a candidate for both with a clean marrow, and they would wipe out the nodes, whatever they are, but they have risks too. He said" Let someone else worry about the nodes".

Kipps like Rick Furman, is biased against transplant. I haven't seen him since December, but he did not recommend treatment then and did not suggest any specific therapy when the time came. He is not keen on CTs and want to rely on his palpation of my nodes and discussed the radiation risk from CT scans.

All sharp caring doctors.

So the way I see it as of today March 25, 2009:

Back to watch and wait. Stop the CT scans every 3 months. Wait for any symptoms.(Maybe recheck in 6-12 months)

Here’s why.

I wanted a DLI. Dr Steve Forman said no despite my mixed chimerism as I was in complete remission MRD negative, so why take the risk.

We were watching carefully to see if I started to relapse; then time to pull the trigger on the DLI.

What happened is that the remission lasted longer than the donor cells. By the time I had relapsed and by Dr. Forman’s evaluation, needed a DLI, my donor cells were down to 0% and it was too late (again according to Dr. Forman).

I am not sure of the rationale to continue with the frequent CT scans.

The downside:

I could miss PTLD or even RT. Possible, but not likely.

My CLL could become more aggressive and harder to get a second complete remission. Recent data suggests that is important for transplant success.

My donor could not be available. The longer I wait, the more likely he won't be in a position to help again. I have only heard the one time from him.

I might have developed co-morbidities that would increase the risk of a second transplant or make it much more risky. I doubt it. I am pretty healthy, but you never know the future. I have sure learned that lesson.

Insurance or government enforced cost savings may make it more difficult to get the second transplant.

The upside:

Fewer CT scans and the radiation risk.

Less worry.

Possibly several long years of remission.

Better treatments. Experience with Bendamustine and Lenolidamide is growing. Humax CD will be approved pretty soon.

Better transplant protocols. The protocol for transplants are evolving. Even the PICC lines are better that 6 months ago.

Truth is that it likely won’t make that much if any difference when we start treatment as to the outcome of treatment.

It is the last one that really tips my hand. At least for now.

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Blogger Alison said...

Hi Brian: cannot pretend to understand what you have to decide - you will wait for a period of time, I think that is what you are saying.

I hope the trip was otherwise happy!

March 27, 2009 at 5:52 AM  
Blogger Unknown said...

Hi Brian

Wow, my head is spinning from all the science, guess it is more difficult because the CLL isn't my leukaemia.

Very difficult situation when you get more than one opinion although I can completely understand why you would.

I just hope that whichever path you take will be the 'right ' one and that we both have many happy and healthy years ahead of us.

With the CML I can also be in remission and mixed chimerism.......I find it difficult to comprehend.

Take care of yourself
Shabbat Shalom from dull grey London

March 27, 2009 at 8:37 AM  
Blogger Lezlei Ann Young said...

Triple Whew!

In the meantime, while you're waiting (and I am praying), please be careful not to get hit by a truck while crossing the street!



March 27, 2009 at 12:06 PM  
Blogger Karen O said...

As you watch and wait, I will continue to keep you in my prayers, for your health and well-being and peace of mind, and wisdom for your doctors, and good times with your family. Karen O

March 27, 2009 at 2:40 PM  
Blogger Nick Sowers said...

watching and waiting while speeding along a bullet train.

March 28, 2009 at 7:14 AM  
Blogger CLL SPOUSE said...

You capture the stream of consciousness of a CLL patient very well.

Maybe your next step be clear to you!

March 28, 2009 at 4:47 PM  
Blogger Debbie Young said...

Brian: I understand some of what you are going through.. it feels as if CLL just eats up your life.. and your body. I hope you make the choice that feels right for your life and your family.
None of it is easy.

April 3, 2009 at 7:51 PM  

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