Monday, October 31, 2011

Fitness and Cancer: A Guest Posting

Please take a look at this guest blog by David Haas who can also be found at :
In the way of self introduction he says:
I am a cancer patient advocate who writes and researches for the betterment of others.”
His topic for today's posting is fitness and cancer.
I know first hand that my transplant doctor, Dr. Forman, insists that all his patients walk on the transplant floor. That meant for me donning a mask and gloves, and waltzing through the nursing corridors with my heavy laden IV pole attached to my left arm through my PICC line even when I felt like crap.
The nurses, who should know, say that those who walk, walk out.
I know there are many benefits to exercise starting with this chestnut courtesy of Dr. Himle:
"Depression has a lot of trouble finding a moving target, 
it's outstanding at hitting a stationary one."
Take a look at this link for more on the exercise and cancer topic. I am a believer.
Please let me know how you feel about this idea of guess blogs.
Here's David's writing.
Fitness and Cancer
It stands to reason that someone who has been recently diagnosed any kind of cancer including common cancers such as breast cancer and skin cancer and even rare cancers like mesothelioma wouldn't want to spend a lot of time exercising. The shock of having been diagnosed with an often fatal disease combined with the sickness, pain and fatigue associated with said disease can all but destroy any motivation that one would have for remaining or becoming physically fit. Physical fitness is important for everybody, even those who are suffering from cancer. Recent studies have found that while a regular exercise regimen is by no means a miracle mesothelioma treatment or a cure for any other kind of cancer, it has helped aid the recovery and improved the prognosis of many cancer patients.

Two of the most common and debilitating side effects of most traditional cancer treatments are fatigue and loss of muscle strength. Cancer treatments such as chemotherapy tend to make patients feel very fatigued, so naturally they do not want to spend a lot of time doing much of anything, let alone engage in any kind of exercise. The muscle weakness commonly experienced by cancer patients naturally results from this fatigue. As they are deprived of exercise, these patients also miss out on some of the benefits that come from being physically fit including improved sleep patterns, increased energy, decreased depression and a generally improved sense of wellbeing. In other words, exercise can help a cancer patient or cancer survivor get his or her life back.

One form of exercise that many experts suggest for cancer patients is lightweight training. It's already been established that many cancer treatments cause a weakness in the muscles, so a weight-training program has proven to be very beneficial for many patients undergoing chemotherapy or similar treatments. It is not recommended that anyone who is experiencing fatigue or muscle weakness attempt any rigorous weight training exercises, but there are plenty of light exercises that can be done that will still help to build lean muscle mass and improve the overall fitness of cancer survivors.

The American Cancer Society has become so convinced by the benefits of exercise for cancer patients that they have implemented moderate exercise programs for patients who have been newly diagnosed with cancer. These exercise programs can technically be considered palliative therapy, which means that while they will not cure or treat the cancer directly they will at least improve the symptoms of the disease or treatment.

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Sinus Pain?

I am tender with occasional severe jams of pain to the right of the bridge of my nose. Otherwise well. No fever or cough or runny nose, but the pain really grabs me. And I am tender there too.

With my recent travels and all the coughing aboard the flights, my self diagnosis is a sinus infection. Migraines can masquerade as sinus headaches, but I have no such history. Neuralgia? Funny spot for that, but the pain fits.

Flying is not the best idea with sinus issues, but I started myself on a steroid nasal spray and I packed my trusty Levaquin and zithromax, and I am on my way.

My granddaughter is missing me and that's my priority. Besides it might be nothing and I am prepared.

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Thursday, October 27, 2011

More from Brooklyn- Kinase Inhibitors for CLL

Except maybe for a transplant, a cure for CLL is still not around the corner and is not likely going to be a single magic bullet. Progress is rapid and exciting, but clinical application is slow and very very expensive.

What is more likely is that a series of lower toxicity, higher specificity, more personalized therapy will be coming our way.

If we choose wisely, and are on the happy side of the survival curves AND meet the strict entry criteria for a trial (set up to insure approval of the drug and not to help the patients in the study) or the very limited FDA indications for our therapy (established among other reasons to give insurance companies coverage to say no to our needs) AND can afford the possible calamitous expenses of these new approaches either through insurance or our savings, we may be able to keep going for a long long time.

Some of the options include the new generation of small molecules that inhibit pathways that are preferentially expressed in CLL cells. Often these drugs block the cross talk (BCR) with other supporting cells, making the cancer clone more vulnerable.

I didn't see any data in Brooklyn, but I heard reassurance that these oral drugs like PCI 32765 (as the manufacturer's web site says: "As a Btk inhibitor, PCI-32765 blocks BCR signaling in human B cells but does not affect T cell receptor (TCR) signaling") and CAL 101 (a selective PI3 kinase inhibitor) and others in the pipeline not only shrink the nodes, but that the rise in the white count when the clonal cancer cells are run out the nodes is only temporary and it too falls to normal, AND even the bone marrow gets cleaned up.

Few side effects, but the risk of infection is significant and seems to me is a bit underplayed.

These drugs are going to big part of the future of CLL management, but now they are only available in trials, and it seems that you need to stay on them very long term or the leukemia quickly flares up again. Nodes can flare up again almost overnight to bigger than they were before therapy But the argument on the other side, is that if they are so safe, no worries, why not stay on them forever. The drug companies love this logic, but that is true with a ton of other therapies from insulin to blood pressure meds.

To their credit, the drug companies are allowing patients to continue (for free) on the meds after the trials are closed.

Not close to a cure, still they are a big step forward.

For that I am grateful.

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Tuesday, October 11, 2011

Brooklyn- The Bottom Line on the North American Educational Forum on Lymphoma

The Lymphoma Research Foundation is to be commended on putting on another first rate conference.

What I like is that while it is totally oriented to help the patients and caregivers in the audience, it tells it like it is.

They may start at the very beginning of the story, for example retelling the very basics on how a mAB (monoclonal antibody such as rituximab) works, but soon they are into the gritty details on how it might be improved upon with the next generation mAB. They don't oversimplify.

Much, but not all is not sugar coated. It does try to be righteously upbeat, but like an an appointment with a good and clever oncologist, you somehow leave feeling positive about the bad news that was just delivered.

So let me hit some headlines.

CART19 therapy (the patient's own T-cells infected with a retrovirus to be re-educated to multiply and to attack B-cells and then re-injected into the same patient) out of U Penn has all the CLLers drooling. You knew that there would be a million questions.

Dr. Bruce Cheson tells it like it is: "The plural of anecdote is not data".

One case reported in NEJM does not signal a cure.

This approach has way too few and is way too new to say anything definite about.

Still it does prove it can be done, not much else. It is a proof of concept study and I am most grateful for its success.

I and others ask how long can you go infection free with no B cells?

Will the remissions hold?

Are there better targets that hit only the CLL cells and not all B lymphocytes? ROR1 for example?

Who is going to pay for this?

Answers are a long ways off.

The next trial will be taking in only 11 volunteers. Unlike nearly all cancer trial, where recruitment can be very slow and difficult, what do bet they will have no problem filling their enrollment? I bet they fill up faster than the pre-orders for the new Iphone.

Dr. Cheson gave the very opinionated and informative breakout talk on CLL.

He is out of Georgetown and has made many important contributions to our knowledge of how to treat CLL. One that he is particularly proud of is his bringing the old East German drug- bendamustine to the USA.

As he points out in communist Germany, bendamustine was developed in the 1960s to be an inexpensive alkylating agent instead of using the then expensive western drugs such as Cytoxan (cyclophosphamide) or Leukeran (Chlorambucil). Those are both off patent now and dirt cheap for a chemo drug. But ironically, we have Treanda (branded bendamustine), a very pricey child of mustard gas that may have some extra oomph in managing CLL and other hematological disorders. The TATA has become the Ferrari.

A short cautionary note before I share his thoughts and slides.

Chaya Venkat may have been the first and the most public, but not the last in understanding and teaching that there is great localism and nepotism in what treatments for CLL we are offered.

If you go to MDACC, you can bet you will be offered FCR and if you show up at Georgetown, expect to see Bendamustine on your infusion schedule.

That is not a bad thing. I want my doc to be very familiar with all the unfamiliar things that might happen to me with my treatment protocol. I want him or her to feel comfortable and upbeat about the therapeutic choice.

So please take into account Dr. Cheson's understandable pride and enthusiasm for his prodigy drug.

He admits that the data is not there yet, but he thinks it is trending to show that BR may be a better front line therapy that FCR.

Here's why.

More patients can get through a full course of therapy of BR than FCR. When you look at the data on FCR, always check how many make it though a full six cycles.

It is safer in patients with renal insufficiency.

There may be less treatment related ALL and MDS. That would be a very good thing.

He believes that auto-immune issues also will be less and that there is less marrow suppression and fewer infections.

Not everyone agrees.

I will post soon on what I learned in Brooklyn on new CLL therapies and transplants and survivorship.

And on the whole ambience and joy in seeing old friends. They even had good vegan food!

I took the redeye on Jet Blue from Long Beach to JFK and stayed awake on Saturday and got up early on Sunday before flying back home and I am glad that I did.

I think all those years as a medical student and intern and resident and fellow has trained me to get by on little sleep.

And to be always be learning.

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Sunday, October 9, 2011

Steve Jobs: Speculation on his cancer death

Many have linked to Steve Jobs' commencement address at Stanford.

If you haven't heard it yet, do yourself a huge favor and listen. It is profound and wonderful and prescient.

His third "story" rings with a deep resonance that has rattled my walls and even broken a few windows in the fortress I had constructed to weather my cancer storm over the last six years.

He said:

"Your time is limited so don't waste it living someone else's life."

He quoted:

"Stay hungry. Stay foolish."

Listen again to it all:

Fewer will have discovered this following link.

It is a balanced and very detailed medical discussion of Steve Jobs' alternative and conventional cancer treatments. Although still somewhat speculative on key points, it is non the less illustrative of the tricky path we all must take when faced with a medical crisis where there is no clear roadmap to a cure.

It is helpful to see how such a visionary deals and ultimately loses his battle with a personal health crisis.

56 years old is way too young to die. I was diagnosed at 54 and I know that fact personally.

Thank you, Steve Jobs for all you have brought in your too short life to my life and the lives of so many.

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Wednesday, October 5, 2011

Machu Picchu

Ben and I will let the picture tell the story

Monday, October 3, 2011

Home Again

No plane trips for a while, just a mule trip up and down the south rim of the Grand Canyon in a few weeks.

I need to sleep and then will happily share what I learnt and didn't in Brooklyn