On the road again

Chicago was cold and windy.

I was actually in Rosemount, out near O'Hare, and far away from the happenings in downtown.

I got to see the nice hotel and the convention center, and of course the O'Hare airport, again. I did have a great time at dinners with my friends from PCE and PCN who make me look good when I am teaching, this time a big lecture to some 400 docs on a pre-leukemic condition (MDS) and a more intimate interactive workshop on circadian rhythm disorders (shift work, jet lag and more).

I am home long enough to prepare for a webcast on MDS and a teleconference on some new treatment options for atrial fibrillation tomorrow. In the evening it's Hebrew school and I have homework that needs to be done.

The next day is my third of six rituximab 500/M2 infusion. The first two seem to be shrinking my nodes which were small to begin with and having no ill effects. Labs remain stellar, and my uric acid has fallen further to 7.5 with my change in my blood pressure pills. BP is still a bit to high, so I may increase my recently started losartan, an ARB than treats BP and lowers uric acid. I

n the evening is a class on medicine and morality from a Talmudic perspective, dealing this week with transplant. Rabbi Abba Perlmutter is another ex-Montrealer and a fine teacher.

And I have to vote. Yes on Marijuana!

The next day, an early morning flight to New York.

Before I leave, I need to plan my trip to Dr. Kanti Rai about what to do next about my CLL and get ready for my CME lectures. The lectures will be easy. Sleep apnea and MDS again, but the meeting with Rai is critical to my future. What will the sage of CLL say about my next step? Honestly, my last consult, almost a year ago just prior to the re-emergence of my ITP was disappointing. He was stingy with his advice. I deeply trust his insights. I hope I get some.

I will be in Long Island Wednesday through Saturday. Then I am gone 4 days the next week to Missouri, and 4 days the week after to San Francisco.

Today I must make some real progress and finalize decisions on my trip to China in January, my trip to the SF bay in November, and decide about going to ASH in Orlando right after speaking in Charlotte. I am thinking it's too much.

And a brief and easy vacation in December trip too?

And today is Halloween.

Boo!

More Good News

I stopped my diuretic (water pill) that tends to raise uric acid. Replaced it with losartan, an ARB that blocks renin from the kidney that constricts blood vessels and raises pressure. In the blockage, the pressure drops and the kidney does better. I am also aware that it can modestly lower uric acid. This is one of the benefits of doing so much lecturing. This little known beneficial side effect of this common blood pressure pill is something I learned when teaching about gout. I am very lucky to have such access to such helpful esoterica.

The magic worked. Uric acid fell in a week to 7.9 from 9.4 suggesting either:

1: I heal fast

2: My medication changes were magical

3: The prior test was a lab error

4: My uric acid has a mind of its own

Moreover, my blood pressure is back in the normal range, though it could be better. My kidney function remains normal and stable.

On the hematology front, my platelets were a remarkable 344,000. The rest of my CBC is all good, though my Hbg (hemoglobin) was down a bit at 13.7 and my MCV (mean cell volume) up a bit at 100. More on that later if it turns out to be an actual worrisome trend. Right now I feel very secure in ignoring it. Or at least just monitoring it.

Had my first rituximab of six weekly infusions (500mg/M2) last week, and happy to say it went off without a hiccup. My small neck nodes and even smaller, but not gone so that suggests I am still sensitive to its effects and still need more. It is probably busy shrinking my critical mesenteric nodes as I am typing away.

This is all good news.

That's good because I am scheduled to be in 7 cities for lectures or meetings over the next 4 weeks.

Included is a visit with Dr. Kanti Rai in Long Island, while I am lecturing nearby, also Chicago, then St Charles and Springfield, Missouri, another visit to my daughter and son-in-law in San Francisco, and a very short drive to speak in Anaheim.

I am already tired before the first flight.

It's Always Something: High Uric Acid

My uric acid or UA level shot up to 9.4 over two weeks from 7.9. It should be under 6, but up to 8 is rarely an issue.

This jump is a recognized complication of my miraculous cyclosporin or CSA that has greatly helped me hold onto my platelets.

In fact, aggressive, destructive gout is a well known risk of CSA. My personal risk of getting that pleasant malady unless things change is about one in four. Besides pain and joint destruction, it can damage kidneys.

Like it does to many others, cyclosporin has also pushed up my blood pressure. That lead to a slight increased dose of my thiazide diuretic to control the pressure. That too can raise the uric acid.

Cyclosporin also is tough on kidneys itself. My kidney function is still normal, but not as good as it was before I started the CSA this time. Last time I took it for this same problem, I had to reduce the dose as my kidney function was compromised. The reduced dose continued to work just as well for my ITP and my renal function normalized.

So I am rechecking the lab in two days, stopping the thiazide, adding losartan for BP control, an ARB that tends to lower UA while it blocks renin receptors that tell the blood vessels to constrict. It is not only good for BP, it is protects the kidney, and it just went generic. Still, I had to get a prior authorization to get the insurance to cover it.

And I will be drinking lots of water. That is easy and should help all the issues.

None of my docs seem keen on reducing the cyclosporin like last time, but rather want to fuss with my other meds to lower the UA while controlling my blood pressure.

The consensus is no allopurinol yet. No gout symptoms, so why add another complicated drug to the mix.

I also got my flu shot today, before I restart rituximab in two days. Normal dose. Don't trust the pharmacists to give me the shot (I am not over 65) and they seem to be the only ones to have the high dose vaccine. Started on the unproven ranitidine trick (300 mg. 2 x a day for 6 weeks, then repeat the flu vaccine) to see if I can boost my response that way. Honestly, I doubt I will mount much of an antibody response, but I am 100% certain that I won't get any after all my vitamin R wipes up the the remnants of my antibody forming B cells.

And just to add another twist, rituximab may raise the uric acid as it goes about the business of killing my cancer cells. This is not very likely as most of my cancer is my nodes and marrow and not in my bloodstream (my lymphocyte count is already suppressed from my last rounds of R) where the kill rate is much slower, so the chance of a tumor lysis leading to another jump in UA is extremely remote.

So many balls in the air for such minor issues.

As Roseanne Roseannadanna said: It is always something.

Fasting may improve chemo

There has been some pretty interesting research published on diet and cancer recently. My friend Andrew G sent this one.

Thanks. It it is all Andrew and not a word from me. The link at the end gives you access to a free PDF of the whole article to download.

Although this blog will always at its core be a personal cancer/transplant journey and is never intended to be a structured or comprehensive examination of therapies, I do want to share the occasional new finding that might help you on you on your way.

I thought this was worth sharing for sure. Free, save, and possible helpful, albeit in a very small trial.

Fasting may improve chemo

Fasting is prescribed in the Bible and is considered a path to physical and spiritual purity. There are books, articles and Web sites that advocate fasting, some of them even for cancer patients. But many oncologists understandably become alarmed when their patients suggest fasting. After all, cancer is a disease sometimes characterized by unintended weight loss (cachexia). Doctors may feel that fasting will only worsen the situation. But what is the actual science of fasting and its relationship to cancer treatment?
Recently Dr. Valter D. Longo, Fernando M. Safdie and colleagues at the University of Southern California (USC) Andrus Gerontology Center and Department of Biological Sciences, have shown that a 48-hour fast protects normal cells and mice, but not cancer cells, against high-dose chemotherapy.

They also described 10 patients who voluntarily fasted prior to and/or following chemotherapy. None of these reported side effects caused by fasting other than lightheadedness and, of course, hunger. However, most patients reported less fatigue, weakness or gastrointestinal side effects from chemotherapy if they also fasted before and/or after receiving the drugs.

Nor did fasting decrease the effectiveness of the chemotherapy. These USC scientists therefore suggest that fasting, in combination with chemo, is “feasible, safe, and has the potential to ameliorate side effects.” They also recommend consulting one’s physician before undertaking a fast, and I totally agree. There are certainly individuals with cancer who should not fast. But fasting should be feasible for other patients, is cost-free and, at least in this preliminary report, effective at reducing the side effects of chemotherapy.

Resource:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2815756/?tool=pubmed

Ralph Moss, PhD

CLL Diary: If pigs could fly, we'd all choose the perfect treatment

For those with CLL, you might benefit from a review of David's very thoughtful take on the recent German study showing that FCR is a game changer offering proof for the 1st time of a therapy that actually prolongs survival.

CLL Diary: If pigs could fly, we'd all choose the perfect treatment

His blog is full of good advice on CLL.

Research on Diet and CLL

Dietary Factors and Risk of Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma: A Pooled Analysis of Two Prospective Studies

1. Huei-Ting Tsai1,2,
2. Amanda J. Cross1,
3. Barry I. Graubard1,
4. Martin Oken3,
5. Arthur Schatzkin1 and
6. Neil E. Caporaso1

+Author Affiliations

1. Authors' Affiliations:¹Division of Cancer Epidemiology and Genetics, National Cancer Institute, NIH, Department of Health and Human Services, Bethesda, Maryland; ²Cancer Control Program, Georgetown University Medical Center, Washington, District of Columbia; and ³Division of Hematology, Oncology and Transplantation, University of Minnesota, Minneapolis, Minnesota

1. Corresponding Author:
   Neil E. Caporaso, Pharmacogenetics Section, Genetic Epidemiology Branch, National Cancer Institute, EPS 7002, 6120 Executive Boulevard, Rockville, MD 20892. Phone: 301-496-4377; Fax: 301-402-4489. E-mail: caporaso@nih.gov

Abstract

Background: Other than male sex, family history, advanced age, and race, risk factors for chronic lymphocytic leukemia and small lymphocytic lymphoma (CLL/SLL) are unknown. Very few studies have investigated diet in relation to these leukemias, and no consistent associations are known.

Methods: Using two large prospective population-based studies, we evaluated the relationship between diet and CLL/SLL risk. Among 525,982 men and women free of cancer at enrollment, we identified 1,129 incident CLL/SLL cases during 11.2 years of follow-up.

Results: We found no associations between total fat, saturated fat, fiber, red meat, processed meat, fruit, or vegetable intake and risk of CLL/SLL. We noted a suggestive positive association between body mass index and CLL/SLL (hazard ratio, 1.30; 95% confidence interval, 0.99-1.36).

Conclusion: We did not find any associations between food or nutrient intake and CLL/SLL.

Impact: Our large prospective study indicates that diet may not play a role in CLL/SLL development. Cancer Epidemiol Biomarkers Prev; 19(10); 2680–4. ©2010 AACR.

I share this so my CLL friends and readers won't feel too guilty that it was too many steaks or too few veggies that did them in. That said, it is clear that a plant based diet is much healthier for us all in terms of heart disease and overall mortality, so I am staying with my raw vegan ways. And anyway, statistics, as we all know, only talk about groups, not individuals.

Good news

The platelet count today was identical to that of two weeks ago, namely a robust 314,000.

Even without my talismen, it stayed way up.

The rest of the blood count was good. Blood chemistries are pending.

Blood pressure is OK, not great, but OK.

My rituximab is scheduled to start next week at 500 mg. per meter squared x 6 weeks.

The plan is to kick the cancer while it's down. Switching my aim from the ITP to the CLL.

Also got my first dTap, that I am sorry to say, did not make my arm a bit sore, suggesting I am not reacting with much of antibody attack to the vaccine. My last dT (tetanus) was ten years ago until yesterday's shot.

That is why I am trying to procure the high dose flu vaccine, but with my recent rituximab and my CLL, I am not sure even it with a second dose in 6 weeks will help protect me, despite my immunity tweaked by the ranitidine trick of Dr. Hamblin.

This is especially likely since I will be getting rituximab the whole time. It would be best to get the shot before I restart vitamin R, but that may not be possible.

Even the passive immunity of the IVig makes all these important shots less effective. And with just plain old CLL, chances of a good response are dismal from the get go.

The line is drawn, the die it is cast

Let's talk CLL. A bit technical again and a revisit to some prior tropes, but it helps me rethink the road ahead.

While in Washington, Dr Kipps' nurse was kind enough to email a PDF of my bone marrow biopsy report that was full of good news. Today Dr. Kipps called to review the findings and help map out our next move.

To start, the biopsy showed nearly normal cellularity of my marrow in all three lines of cells, so despite more than five years of CLL, and a transplant, my marrow that should be full to the 41% line is full to 39%. In other words 39% of the marrow is busy making blood. Pretty good. Plus the precursors for platelets are in the right numbers; not too many (that would suggest increased destruction), and not too few (that would suggest decreased production).

The biopsy also showed the CLL to be in the nodular form, which carries a better prognosis than a diffuse interstitial pattern. The down side is that nodules may not yield their cancer cells to the aspirate, so the flow cytometry that showed 3% cancer is probably a slight underestimate. The more accurate biopsy showed 5-10% CLL.

The fact that I am CD38 negative and there is no 11 q deletion or other FISH abnormality, while good news, is likely a function of the low number of cells that are being screened and doesn't mean much.

So do my doctors agree on where to from here?

There are surprising united on at least my next step, but after that, they diverge. Still, that is more than I expected. The future is hardly certain.

Dr. Kipps is the most reserved about more rituximab now. Drs. Forman and Sharma are ready to push ahead. Kipps is more ambivalent, but ultimately said and I paraphrase, why not give it a shot. While he admits it may shrink my nodes, he does not think it will get me to MRD negative in the marrow. That is not rituximab's strong suit, but with the cyclosporin, anything is possible. R seems to make everything work better. It is the ultimate helper drug. And there is little down side. Some immune suppression, but it is easy on the marrow, and resistance seems to be not much of an issue.

So I plan to start on more Rituxan in a week or so after I return from a 1/2 day visit to Atlantic City to lecture. I am pushing for the slightly higher dose used in the German study of 500 mg/M2 x 6 weeks. The more R, the better the response!

I will continue on my cyclosporine and my IVIG.

Three months after the last dose, it will be time to bite my nails and re-stage with a repeat bone marrow biopsy and CT scan.

If I am CR, MRD negative then, probably sometime in March 2011, I can expect a long glide, a long time until I will need more treatment. If my nodes are shrunk to less than two centimeters, maybe that's the time and place for a Campath chaser to clean up the marrow if it is not already MRD negative. Kipps likes that idea, but I have my doubts due to the infection issues. If I can achieve MRD negativity, the infection risk seems to be less. Maybe any detectable residual CLL screws up the immunity even more.

If my nodes are still up then campath is out (it is lousy with any node > 2 cm), so maybe FCR or PCR a trial or lenalidamide or who knows.

Then nail biting and re-staging again.

If I am not pretty much disease free, we try something else.

Then a second transplant when I am in a deep deep remission. Excellent survival odds and a better than 50/50 shot at a cure.

That's the big picture today. It is feeling more solid, more real, but there are still way too many turns in the road to expect to not have to reroute my path to that cure a few more times.

Still I feel confident of my ultimate success.

One step at a time.

Talismen, Ritual, and Magical Thinking

Yes, I too believe in the power of an amulet to pry open the doors of perception and lead me me to the promised land of health.

There are two that are very special to me.

My daughter Rachael gave me a beautiful greenstone (jade) carving from the Maori in New Zealand symbolizing rebirth.

The koru shape is a scroll shape and is linked to the New Zealand fern plant. The shoot of the fern has a curled-over tip which unfurls and becomes a fernleaf. The koru reaches towards the light, striving for perfection, encouraging new positive beginnings... The koru, represents the unfolding of new life, that everything is reborn and continues. It represents renewal and hope for the future. Spiral, geometry of life, sacred creation...

What better hard connection with the my rebirth, my second and third shot at life, a transplant. I wear the pendant all the time.

My second good luck charm is of course my very beautiful, very rare, imported from Australia, Beatles watch, a gift from my friend, Howard in Montreal.

Everyone knows that the Beatles are good for platelets. The Beatles are special. I never take it off. My platelets have soared with it on.

I also take a tablespoon of unrefined raw sesame oil twice a day, though this act also has a foot in the botanical camp as a well known cure for ITP. I started this rutual when my platelets crashed last May based on way too little data and the advice of a few CAM oncology experts that seemed to know what they were doing. I also hedged my bet with my known winning combo rituximab and cyclosporin and the triple therapy has been 100% effective. Platelets have been near 300,000 since the first week. They were in the twenties.

One last ritual: I finish every shower with a shock of icy water, again not just for its magical powers, but also based on the advice of a doctor of Chinese medicine. Not sure why. This has been part of my routine since near the beginning of my diagnosis, and I am least convinced on its power due to my stormy course with my CLL, but I persist. What's the harm? And it sure wakes me up.

On my recent trip to Canada, the string for the pendant broke (the new one will be ready today, the strap for the Beatles watch gave out (and the crystal broke on the way to the shop - both are being repaired), the sesame oil was banned by the TSA on the plane, but I still could take the cold showers in Montreal.

Did I panic without my transcendent fixes? Was I afraid?

My amulets are like Dumbo's feather, I can hear Timothy, the circus mouse in the movie whispering in my ear that they are just reasons to believe, crutches no longer needed, just there to now be enjoyed for their aesthetic and personal value and warmth, not their magical powers.

Wednesday is my next lab tests. They were fab when checked two weeks ago, and I am sure they will be fab again. It is the mind, not the amulet that counts.

Wet Washington and staying flexible

In Washington, but we didn't fly in. Ended up taking the train from Newark airport to Union station as all flights into the capitol were cancelled due to yesterday's rain. You have to be able to change your plans on a dime, be ready to consider a different option. Can't fly in? No problem. There must be a train we figured. It was pleasant, fast, and pretty easy. And since we arrived a few hours after we planned, it has been great,-the National American Art and Portrait Gallery with an amazing collection and an extraordinary exhibit of the collections of Rockwells from Lucas and Spielberg. -the Spy Museum full of miniature wonders and cagey advice (more to follow later), - the Canadian Embassy with a wonderful small gallery of Inuit art and Bill Reid's amazing sculpture out front and miles and miles of walking.

My lecture on anemia to 300 plus primary care providers was well received, and fun to do.

Great vegan and raw food.

It has been a nice if short visit. Tonight we are going for a walk to the White House. Maybe the prez needs a few tips on the health care issues and invite us in to share a bottle of Honest Tea.