What To Do When You Have Cancer

This was published about a week ago, but I thought it was funny and provided some good advice: It's called "So You Have Cancer: 10 Things to Do Now, Even if You're Not Warren Buffett," written by the film maker and author Michael Solomon.

It's a short piece -- a list of 10 things -- but I agree with most of them, so they must be right.

The advice is geared toward new cancer patients, but I think it fits all of us.

I especially liked #1, because it's so close to what I wrote in my last entry:

1) Blame Canada -- Or Philip Morris. Or your stress-Nazi boss. Just don't blame yourself. Because even if it is your fault, right now it's not your fault. Nothing about cancer is your fault. Give yourself the Robin-Williams-in-Good-Will-Hunting Hug because it's not your fault. Once you're all better you can get down on yourself for smoking, or eating poorly, or internalizing your parent's guilt trips. For now, stay focused on getting better. 

Because it really doesn't matter how you got it, not at this point. What matters is getting rid of it (or learning to live with it, as may be the case).

I loved #9, too:

9) Turn On Your High Beams -- E.L. Doctorow once said this about writing, but it's true for surviving cancer as well: "It's like driving at night in the fog. You can only see as far as your headlights, but you can make the whole trip that way." So each day, just focus on getting to tomorrow. That's the only "long-term" goal you need to be concerned with till you hit remission.  

Such a great way of putting it.

Some other good advice, too, that I tried (and still try) to live by: understand the math, don't get too obsessed, let people know what you want them to know, and have a good relationship with your doctor.

All good advice (although I'm not so good about following #3....)

What Causes Lymphoma?

I have mixed feelings about an article I read a couple of days ago.

The article is called "What Causes Lymphoma (the Epidemiology of Blood Cancer)?" and it was published by The Examiner.  The author, I should point out, hosts a radio show on cancer, and is an excellent advocate for cancer patients.

But something about the article kind of nags at me.

The article addresses the question, What causes lymphoma? (as the title suggests). It then runs down some of the possibilities: exposure to certain chemicals, some pesticides, maybe some hair dies and solvents -- some associations being stronger than others. People with autoimmune disorders seems more vulnerable, as do people who had certain previous cancer treatments. Exposure to the EBV virus seems like a possibility.

I think maybe one thing that bothers me is that the article is so general. Not many specific lymphomas are mentioned, so it's hard to make a connection between some environmental issue and a particular disease. It also fails to mention that sometimes lymphoma seems to come from spontaneous genetic mutation.

Now, the author does make clear that sniffing a pesticide isn't automatically going to give you cancer: "We know that there is more to the equation than exposures to toxins and viruses.  After all, many people exposed to these agents do not get lymphoma and many people with lymphoma do not have known exposures to these agents.  Our immune system plays a critical role in defeating cancer and lymphoma actually is cancer of the immune system.  This is why understanding what causes lymphoma is critically important not only for lymphoma, but also for unlocking the mysteries to other cancers and other diseases."

It's also clear that this article is a kind of teaser for his radio show, which will discuss the epidemiology of lymphoma on May 15 (and it sounds like a great show).

But here's what bothers me about it. I agree, as he says, that "Curiosity may kill a cat, but a better understanding of 'what causes cancer' will save untold lives through prevention and through the development of better treatments." Curiosity in a cancer researcher? Absolutely. But in a patient? Maybe not always.

The article called to mind a conversation I had with someone who had a family member diagnosed with Follicular Lymphoma. She was getting a little obsessed with the "What caused this?" question, and asked me about it. I told her I had no idea what caused Follicular Lymphoma, particularly her family member's, but mentioned a few of those associations that the article mentioned. "He's a swimmer," she said. "Could it have come from swimming in a lake?"

I told her, of course, that I had no idea. But for a long while, she really needed to know, just what did he do to bring this upon himself?

And I think that's not healthy for anyone, especially a cancer patient. Does it matter how it happened? Don't we have enough to worry about without the added guilt about choices we made at some other time earlier in our lives? Now, I suppose one could argue that a 50 year smoker "brought it on themselves" (though I would never wish cancer on anyone). But what about someone who worked on a farm for 50 years and was exposed to pesticides? What's the point of regretting a lifetime of hard work, and of taking care of your family by doing it?

I don't mean to trash the article. As I said, I think the subject is fascinating, and I'll no doubt listen to the webcast of the show. But I want cancer patients reading to take it for what it is -- interesting subject matter that will have consequences for the researchers who are trying to help us. And not a cause for obsessing over things we can't control. We have enough of those.

Hope in Cancer Research

Nice piece yesterday from, of all people Marlo Thomas (yes, that Marlo Thomas) on recent research in cancer. Why is Marlo Thomas writing about cancer? I have no idea.

To celebrate Cancer Awareness Month, she asked some top cancer researchers about what makes them optimistic about the future of cancer research.

She got some Big Names from St. Jude's, Dana-Farber, Sloan Kettering and the like to give their opinions.

At the center of all of their responses is DNA. As Thomas says, a researcher "looks at the normal DNA of the patient, and then compares it with the DNA of the cancer cell in that patient. Typically, these two samples are going to look more than 99.99 percent the same. But it is that tiny difference that holds the secret to what is causing the cancer. What is needed then is a drug that can correct the problems caused by that DNA damage." Ten years ago, we couldn't even see the DNA. Five years ago, we couldn't classify cancers the way we can now, based on DNA analysis. And that ability is what makes Dr. Charles Sawyers of Sloan Kettering say, "It's why I rush to work every day."

How's that for optimism? It's just what I want to hear from a cancer researcher.

The piece is well done, and it includes some nice statements from the various cancer professionals. Well worth a read, especially if you're looking for a reason to be optimistic.

(And I actually do know why Marlo Thomas is writing about cancer. Her father, Danny Thomas, founded St. Jude Children's Hospital, and she has carried on his work. Thanks, Marlo.)

Busy, Busy

I realize that I have not been good about posting this month. Just for fun, I looked back over the last few Aprils to see if this one was any different, and it isn't. Historically, April is the month I post the least on Lympho Bob.

It's a work-related thing; definitely the busiest time of my year.

To make matters worse, it affects everything else, too -- my running has been suffering horribly over the last couple of weeks, just as I had been picking things up really well and getting in way more miles than I had in a long time. I'm still running; just not the nice long (for me) 5 or 6 milers I had been doing.

So here's some inspiration for me to get back into my running groove when things calm down in a couple of weeks: a story about a cancer survivor who is trying raise money for the British Leukemia and Lymphoma Society by running from Manchester to London in a week. That's 300 miles -- about one and a half marathons a day, for a week. he hopes to raise 10,000 Pounds Sterling (a little more than US $16,000). Plus, he's 43 years old -- not a whole lot younger than me.

Good luck, governor.

And thanks for the inspiration. I swear I'll get back to those long Saturday morning runs soon.

Lymphoma Survey

I encourage those of you who are lymphoma patients (or former patients) to take a survey sponsored by the Lymphoma Coalition. Here's the link to the survey:



http://www.lymphomacoalition.org/index.php/global-patient-survey


The Lymphoma Coalition is a world-wide organization, made up of lymphoma advocacy groups from around the world, representing 35 countries. The U.S. is well-represented, with seven different organizations as members.  The Coalition works to raise awareness and improve understanding of lymphomas, ensure best practices in lymphoma management, and encourage the creation of new advocacy groups.


Part of that mission is achieved through their survey, which they conduct every two years. By looking at the results, and comparing results to those from previous years, they can get a better sense of how they improve on their mission.


The 2010 survey results are available on their website. Fascinating results, particularly on the lack of information and knowledge that people have about their lymphoma. I forget, sometimes, that not everyone is so aware of what's going on with their disease. I guess that's because (1) I'm so hyper-aware of it myself, and (2) I'm involved with a support group of other hyper-aware people. So it's good to see that more work needs to be done in helping lymphoma patients understand their choices, and encourage them and their doctors to do more.

Follicular Sisters

I guess you can label this Good News that Came from Bad News: a bone marrow transplant from one sister to another resulted in the the recipient contracting Follicular NHL from the donor. But it might be leading to some important insights about the disease.

The findings are described in the most recent issue of Oncology Times in an article called "New Insights into Follicular Lymphoma from Sister-to-Sister Transplantation." (Incidentally, I love that oncology has its own twice-a-month newspaper.)

The study described was funded by a grant from Stand Up 2 Cancer, which has lived up to its promise to fund some funky, non-traditional research. Here's what happened: one of the sisters was diagnosed with chronic myeloid leukemia, and received a bone marrow transplant from her sister. In such cases, the recipient is given very aggressive chemo, which destroys the immune system; the donor's bone marrow allows the patient's immune system to recover much sooner. In this case, over the next few years, the recipient received two additional donations from her sister, this time in the form of leukocytes instead of a full BMT. The leukocytes are white blood cells that are able to sniff out and destroy cancer cells in a normal person; the theory is that transplanting them into another person will help the recipient's body to bypass that mechanism that keeps a cancer patient's white blood cells from recognizing their own cancer cells.

So far, so good. But then the donor sister developed Follicular NHL, and six months later, the original cancer patient also developed it. Coincidence? Maybe, but more likely the transplant was the cause.

To find out, some smart people from Dana-Farber in Boston looked very closely at the DNA of the two sisters Follicular cells, and at the leukocytes (some of which remained frozen). The article gives lots of detail about the science behind what they found, but the important thing is this: they could match up a lot of the mutations in the DNA. We already know that a switch occurs between two genes in fNHL cells. But more importantly: they could not match up all of the mutations.

What that suggests is that there might be some "ancestor" cell in fNHL, one that was transplanted from sister to sister. So while chemo might do a great job of wiping out Follicular cells (heck, even Rituxan seems to do a great job for lots of people), the ancestor cell from which they spring, or which causes the mutation, is not affected by the chemo. This might be why Follicular keeps coming back. It might also offer insight into why Follicular behaves so differently in different patients.

Of course, the suggestion that an ancestor cell exists is a lot different from knowing where it is, or what it is, or IF it is, and then somehow sequencing that cell, and ten figuring out how to get rid of it. But it's kind of an exciting first step.

And taking a wider view, the study also has implications for other types of cancer. The method they used to look at the DNA mutation was the real innovation here, and might be helpful in mapping out other cancers that behave differently in different patients.

More baby steps toward a cure.

Cancer Vaccines

All this hype about a "universal cure" had me looking back to something I read earlier this month about cancer vaccines. It's from a sight called "Seeking Alpha," which is not a medical information site, but rather an investment advice site. The article is called "Cancer Vaccine Approaches: A Race for Dominance in the Field," and it lays out some of the different types of cancer vaccines that are out there now, for different types of cancer. (Including NHL, of course; I've been writing about different attempts at a vaccine for a while now.)

It's a pretty good introduction to cancer vaccines, I think. The whole "investment" angle is interesting -- a good investor would, of course, want to gamble on a company that is most likely to have success.

That leads to a caution, of course -- good business isn't always good science (and vice-versa).

Still, pretty interesting reading.