Dr. Forman April 16, 2009, my diet and supplements, and my comedy routine in Niagara Falls

Much to share:

Let me start with my appointment with Dr. Forman last week.

All my lab remains normal and I have no evidence from lab tests of the dangerous post transplant lympho-proliferative disorder (PTLD). No active EBV in my blood to be found.

My B cells are only about 1% of my lymphs and my T cells are normal with healthy CD4/CD8 ratios.

I am realizing that my doctors’ appointments are become less important, less dramatic, and less frequent. And I don’t post on them, as I walk out the door.

Maybe the rest of my life is just getting busier.

I don’t see my doctor for over 2 months now.

The question is no longer whether my nodes have grown or not. My radiologist friend from France is the latest doctor to confirm the growth. My mesenteric nodes are more bulky. The rest are stable. That’s undeniable now. Four different readings: one conclusion. They're bigger.

What does it mean?

There is still some question as to whether the growth is a sign of relapse though I would say if they shrink it was a sign of remission. Either way I would be happy.

Biopsy is way too dangerous and really an overreaction.

So the question is when to repeat the scan. The range of medical advice is from 3 months to until there is a clear indication.

I am thinking the middle road. No need to rush into a life threatening second transplant, but you don’t want to wait too long, when the disease may be harder to control, bulky or worse yet, undergone clonal evolution. 

6-12 months makes sense. That's Dr. Forman's plan. A minimum of once a year. CT is cancelled for June.

I suspect this is all moot. The disease will decide. I doubt I will grow massive gut nodes without something popping up somewhere else or my lab showing subtle signs of recurrence.

The real question is what to do about the growing nodes seen only on CT scan. Do we jump it and hit the cancer when the tumor burden is low? Bexxar to deliver a toxic radioactive payload to my nodes while my bone marrow is clean? That might make sense. The NK study to immunologically mop up the remains of the Amalakites?  Revlimid to increase the immune surveillance? 

I am revisiting old battlefields in my head.

Dr Rai says let someone else worry about your nodes. He says my loss of the graft is bad news, but not a death sentence. He says specifically no Bexxar or Revlimid.

He says I have gotten quite well, and done it while staying remarkably unscathed from treatment. And the next steps could be most dangerous and I may not miss the minefields a second time.

So best to just forget about it.

Or try something different. If they are all gut nodes, let me target the gut. For me that means the organic vegan low glycemic index diet. To you that means raw green vegies and raw nuts and seeds. Oh, they can be dehydrated or blended or juiced, but that’s about it.

This diet is nearly impossible when you travel (although Toronto had a great raw restaurant-LIVE- check it out), and hard when you are at home. You spend a lot of time chewing. You spend a lot of time eating. And what goes in, come out, so you spend a lot of time indisposed.  The term bulky does not only refer to lymph nodes.

Let me be clear there is no evidence that it works. In fact, on a similar diet, my CLL got worse about 2 years ago. This time I am stricter and avoiding the sugars in fruits and carrots and beets.  It is based on the rainbow green cuisine writings of Dr Gabriel Cousens.

It is pretty far out.

People ask me how I can stay on this diet.

One: It’s delish

Two: It’s healthy

Three: I am fighting for my life

Four: I’m no saint, I cheat a little

Five: When I am cured, or if there if no benefit, I will definitely loosen up.

While on that strict diet, I continue with my zinc and Vitamin D3 (6000 IU) a day unless I walk shirtless on the beach). I still drink three pots of organic Japanese green tea, and I have added vegetable source digestive enzymes and an organic source of Vitamin C. And I thought adding 2 Teavigo green tea extract with all that EGCG might make the nodes a bit less hospitable for my cancer bad boys.

Add to those 1-2 tablespoons of organic cold pressed flaxseed oil (fancy linseed oil commonly used to thin paints) and EFA (Essential Fatty acids) and vitamin mix that are part of the Budwig diet. Check it out.

Further out you say.

I am not done yet.

I am even considering (all my hard core medical readers are running for the doors now) the infamous “detoxifying” Zeolite of MLM (multi-level marketing) disgrace, though I see no reason not to buy the cheapest stuff I can find. This MLM stuff is pretty nasty and turns be off the whole business,  and it smells of pseudo-science to me, but MDs I respect have recommended it.

Remember, none of this is of any proven value (except the green tea),

The good news is that also none of this is too pricey (well maybe the Zeolite), and all of it pretty healthy and safe.

So when my next CT shows my guts nodes have shrunk, my doctors will say: See Brian, you worried for nothing. But you and I will know that it was my diet and supplements that righted the ship.

And if those nodes, and this is most unlikely, have grown, I am not going to eat a steak, or even a smoked meat sandwich, but I might order some sushi or have a thick wedge of sharp cheddar cheese on a piece of home baked apple pie. Organic, of course.

Have you lost all respect for me, my hard nosed colleagues? Remember I am the one who tried and rejected Chinese medicine when it did not work, and embraced the most aggressive intervention in Western medicine: a stem cell transplant. The jury is still out on that, but it sure benefited  much more than all my alternative treatments.

But I am still looking, refining, guessing, experimenting, and trying not to be stupid.

Last thing:

The CLL-PAG conference at Niagara Falls was very special. More later. I did my comedy routine.  I won't be self-deprecating. I killed them. It was a smashing success. It helps that I had such a generous and kind hearted audience. And they all had CLl, or doctored or cared for someone with CLL.

I had such fun. Little is better in life than making people laugh at their predicament. Except maybe making their doctors laugh at themselves.

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.