Tuesday, April 28, 2009
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.
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.
Saturday, April 25, 2009
Niagara CLL-PAG Conference
Labels: CLL-PAG comedy Niagara Falls
Tuesday, April 21, 2009
Sunday, April 19, 2009
Good and Bad
Labels: Graduation Miriam
Wednesday, April 15, 2009
Walking against the Wind
Monday, April 13, 2009
Walking the dog
Sunday, April 12, 2009
Labels: Walking Zen Zazen
Saturday, April 11, 2009
Thursday, April 9, 2009
Another scotoma and a very busy and beautiful day
Wednesday, April 8, 2009
Labels: Leonard Cohen
Tuesday, April 7, 2009
Labels: Leonard Cohen Platelets