Sunday, April 26, 2009

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.

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Blogger Barry B. said...

Like you, I have (though perhaps you don't have anymore) the 11q deletion, developed after clonal evolution. My nodes started growing after my first treatment.

I am a vegetarian as well, though I do eat an occasional piece of fish, and I do eat eggs and some dairy (primarily cheese, which I love).

I will say that in all of my research, I have never found anything that suggests that a raw diet (which I find dangerous because of my low neutrophils and terrible over-all immune status), or any of the other things you mention, to be of any benefit for CLL patients, except, as you mention, the green tea (though it never, ever, helped my counts). Ditto the vitamin D.

In fact, I think the green tea seemed to make my abdominal nodes larger and more painful.

I have had three prior treatments and looking at another regime because of the persistent disease. I don't think a few handfuls of nuts and some vegan items will do anything for relapsed CLL.

I have followed your choice with interest, and I guess you are in better shape than I am at this point. I am no longer a candidate for a transplant, and frankly from what I've seen, the success rate is pretty low. I've read that long-term survival after a transplant is about seven percent, with the quality of life often quite poor.

And Dr. Hamblin writes of two of his patients who committed suicide because of the graft-versus-host disease. It sounds as though the 'cure' is worse than the disease.

April 26, 2009 at 11:57 PM  
Blogger CLL SPOUSE said...

You really hit the right note with your routine at the CLL Conference!

A day without a good belly laugh is a day not worth getting up for.

You didn't make light of CLL. You were quite honest about its impact, BUT in a way that was therapeutic. Thanks for all the work that went into it.

April 27, 2009 at 4:33 AM  
Blogger Alison said...

You do what you think is right! Tell us about the "comedy routine," when you have time.

April 27, 2009 at 6:19 AM  
Blogger Unknown said...

Hi Brian

What a lot of information in your last post. I guess we are both at the stage where we sit back, get on with other things and just see what happens over a period of time. I don't fancy your diet though........well only the green tea bit! Good luck with it though.

Glad the conference went well and look forward to hearing more about it.

I was also sad to hear about Miriam; I grew up with dogs and the attachment is priceless.

I will try and send you a post card from Israel.

take care

April 28, 2009 at 7:06 AM  
Blogger oh dad said...

Thoroughly enjoyed the laughs at the Falls Brian. Thanks very much. I'd much rather have my 11q deleted than lose my sense of humor.

April 28, 2009 at 3:48 PM  
Blogger Debbie Young said...

Hi Brian
Have you done any research on raw milk or colostrum?
do a google search on Jerry Brunetti, he is on youtube too.
Would love to know what you think of his protocol. if you cannot find it I will email it to you

April 29, 2009 at 5:54 PM  

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