Sunday, April 15, 2007

A lymphomaniac in the White House?

You may have heard by now that former Sen. Fred Thompson, who is considering a run for the Republican nomination for president, has Marginal Zone Lymphoma, for which he has been treated with my favorite mouse cocktail, Rituxan. MZL is described as an “indolent lymphoma,” and here is a report last week from abcnews.com, in blue print:

Thompson, 64, said in a statement that his cancer was initially detected during a routine physical two and a half years ago, and he initially received chemotherapy to treat it.

This means, that for the time being, Thompson has no signs or symptoms of the cancer. Thompson's cancer is also a case of "indolent" lymphoma -- a type of cancer that, while rarely cured, is slow-growing and associated with a much more favorable prognosis.

"I have had no illness from it, or even any symptoms," Thompson said in a statement issued Wednesday. "My life expectancy should not be affected. I am in remission, and it is very treatable with drugs if treatment is needed in the future -- and with no debilitating side effects."


Dr. Bruce Cheson, professor of medicine and head of hematology at Georgetown University Hospital, treated Thompson. He says the senator's prognosis is favorable. "Some lymphoma are very aggressive, but people with slow-growing types, like Sen. Thompson's, often die from natural causes associated with old age, rather than from the disease," Cheson said in a statement, also issued Wednesday.

What Indolent Lymphoma Means


The word "lymphoma" is actually a general term used to describe more than 30 different types of cancer that affect the lymphatic system, all with varying degrees of aggressiveness.


"It really depends on the type of lymphoma you have as to your outlook," said ABC News Medical Editor Dr. Timothy Johnson on ABC News Radio Wednesday morning. In Thompson's case, Johnson said, the fact that he is still in remission after his initial treatment is a positive sign.


"With a very slow-growing, or indolent, as we sometimes call it, form of lymphoma, sometimes in those people you just watch and wait and monitor the situation," said Johnson.


"It sounds like he's got one of those forms of lymphoma that is very slow-growing. Many people with this kind live a normal life span."


Indeed, current figures suggest that patients with indolent lymphoma can generally expect to survive for another seven to 10 years.


However, it is unlikely that Thompson's cancer is completely curable using current treatments. Since most cancer treatments today target fast-growing cells, it's hard for doctors to completely wipe out slow-growing ones.

Chance of Recurrence Remains

Even though Thompson is currently in remission, given the nature of the disease it is possible that the cancer could recur in the years to come. After initial treatment, most patients with this type of cancer have a remission period of between 1.5 and 4 years, after which they will relapse. Doctors will then treat the cancer again, usually with a stronger course of treatment.


Subsequent periods of remission are often shorter than the first. But since these periods are measured on the scale of years, many patients can expect to live for many years after diagnosis -- perhaps eventually dying of old age rather than from the cancer.


This likely means that if Thompson is considering a serious presidential bid, it is unlikely that his cancer will hold him back.


"There's always a chance of recurrence with this, and any kind of lymphoma, at which point it usually can be treated again," Johnson said. "So I think at least for the next few years, he should be physically able to run for president."

Sounds a lot like some cases of chronic lymphocytic leukemia, right? After all, CLL is medically considered to be a low-grade lymphoma.

There was a budding discussion on the ACOR CLL list about the ramifications of having someone with this condition -- our condition -- in the White House. It was posited by a couple of members that disease-related fatigue would be debilitating, and that chemotherapy might lead to “chemo brain.”

I replied thusly:

"I think it is pretty evident that some presidents can have 'chemo brain' without ever having had chemotherapy. There are those who are physically fit and yet who are unfit for office. I would have no problem voting for a candidate with indolent lymphoma, or CLL, whose prognosis indicated that serious complications would be unlikely for at least four years, and who appeared to be mentally sound and had the wisdom and ability to do a good job."

Alas, this discussion has been cut short by the on-duty moderator, who thinks it is about politics, a list no-no, when it really is about the question of whether CLL and its cousins render its victims potentially incompetent to do demanding work. (This rather short-sighted approach is why I do most of my posting at CLL Forum, where there is currently a civil discussion of this very same issue.)

But I think the discussion that began on ACOR deserves to continue, and so I will post about it here, and elaborate a little bit more.

There are indeed people with CLL-related fatigue, and those who need rest during chemotherapy. Not everyone with CLL, or indolent lymphoma, has the energy to run errands, let alone run the country. But an enormous number of patients, probably the vast majority, do have the energy. They have jobs. They raise families. Many have positions of responsibility in all walks of life. The case of the late 60 Minutes newsman Ed Bradley is the most prominent example of someone who maintained a high-powered career with CLL. There are likely other rather well-known CLLers, who keep their disease a secret, fearing it would color perceptions of their competence and ability, leading to diminished opportunities.

This is already the case with Joe and Jane Average, patients who really do face the prospect of employment discrimination if they are honest about their condition. I personally know of people who have been eased out, let go, even fired, following disclosure at work of their CLL diagnosis. Not only is an income at stake for these folks, so, often, is health insurance. (Beyond these practical matters, of course, are issues of vocational fulfillment and self-image.)

In the same way that the American people have come to realize that you can be a woman and hold high office; or be an ethnic minority and hold high office; or be gay and hold high office; or be of a religious minority, such as a Jew or a Mormon, and hold high office; or be in a wheelchair and hold high office; has not the time come for us to realize that you can also have a chronic disease like CLL or indolent lymphoma and do the same? Indeed, having a disease like CLL can broaden one's horizons in a way that might actually serve the country well.

I am not rooting for Fred Thompson to win, since I think we desperately need a break from Republicans. But I am rooting for him to enter the race, which will raise the profile of people like me, as well as the consciousness of the public at large.

9 comments:

Pat said...

I'm pleased that you are continuing the lymphoma discussion here and the Forum. This is a good opportunity to increase public awareness of CLL: most times when I have said "CLL", the response back was first a blank stare. Well, except for the one time when the response was the phrase we hate to hear: "Oh, you mean, the good cancer".

Clearly, in our society, we've moved beyond a president needing to hide the disabling effects of polyomylitis. Now decades later, FDR is often regarded with fondness and respect but could he make a bid for the presidency from a wheelchair in 2007? I don't think so.

Anonymous said...

I don't know how the path of indolent MZL compares to the path of indolent CLL/SLL. And I understand that the Rituxan that Fred Thompson had 2 1/2 yrs. after diagnosis was at his behest and not because Dr. Cheson thought he needed treatment then. But for a SLL/CLLer to have treatment only 2 1/2 years after diagnosis would belie a slowly progressing disease course. I believe Dr. Cheson is well respected, though, so his words leave me wondering.

Lynn

Tim said...

That's funny, I thought Fred Thompson was a Republican?

I don't know about anyone else, but I'm voting for whoever the Democratic party nominates, be it Hillary Clinton, Barack Obama, John Edwards, or even Dennis Kucinich.

The last thing this country needs is another right wing conservative ideologue sitting in the white house, no matter how good a DA he may have been on Law and Order.

Chris said...

America is entering 50 years of torment as it tries to switch from oil to other energy sources. It was oil that made the U.S .great and it will be the lack of oil that will bring the U.S. to her knees.

Now is not the time to pursuit the "cult of personality" but to select someone with a clear, strong vision of how to deal with the rising star of China, fight terrorism and deal with the social upheavals that are developing in the homeland.

What is needed is an FDR or Kennedy, even a Barack Obama perhaps. Fred Thompson is a visionary light weight with or without CLL or NHL.

Never mistake motion with action. (Albert Einstein)

Deb in Chicago said...

When I first heard about this - these things popped out: indolent, Rituxan, Bruce Cheson and I immediately said to my husband - "I'll bet it's CLL but since they are virtually the same disease, Lymphoma is a better word to put out there than Leukemia."

On the list we hear from many who view our disease differently depending on how it is reacting. Those with more aggressive disease want more publicity and action and $$ - totally understandable. At the other end there are those whose path is slower and consider that they have time to learn, live and, possibly, never need treatment and who will, indeed, die of something else.

Many want publicity to show how horrible this disease can be, others want to have big names who show that we can continue to be productive human beings. The larger issue may be that vast land which falls in between. We don't get the funding we would like but considering this is frequently still labeled an older person's disease it is likely to remain underfunded. If more testing is done and more people are proven to have CLL or similar diseases (I think it's bigger than we realize) then perhaps we'll see some action.

Anonymous said...

The only way America will be 'brought to her knees' would be by hand-wringing, shrill-voiced, whimpering liberals.

America is the greatest nation on earth, the greatest nation ever, and will remain ever so, if real men and women are kept in charge.

The liberals are in a contest to see who can surrender the fastest to Islamic terrorists. What they and the defeatists in this country fail to understand is that the war against radical Islam has been going on since the Crusades. The radical elements of Islam believe they can wait Christianity out.

The slack-jawed Democrats certainly lend support to this belief.

America and the West must be aware of the strategy of the enemy, understand him, and defeat him as he seeks to crawl into a cave on his belly.

David Arenson said...

Folks, this is not about Republicans and Democrats and the lengths of their jaws or the horns growing out of their heads, it's about the profile of CLL among the public at large.

Publicity can, of course, be a double-edged sword. Imagine a high-profile CLLer who is so long-lived and functional that the public gets the idea that the disease is nothing more than a minor nuisance and not deserving of attention (funding). What we need is a high-profile CLLer who struggles with unmutated CLL, perhaps with some difficult FISH results. And one who has lots of money to throw into research. I wouldn't wish CLL on anyone, but the ideal candidate would be Oprah Winfrey or Bill Gates or maybe Bono.

Anonymous said...

My candidate: Bill Clinton. Though he might blame it on a sexually-transmitted disease.

David, you brought this on yourself by writing, "I am not rooting for Fred Thompson to win, since I think we desperately need a break from Republicans."

Obviously, this is a political statement!

PS, your writers who compare this to CLL are quite mistaken. The diseases are not at all alike, except superficially in that they involve B lymphocytes. The disease is one of the lymph nodes, not the bone marrow, which is the hallmark of CLL.

I hope Thompson runs and wins. He seems to have more 'gravitas' than Clinton or Bush the younger.

steve said...

"PS, your writers who compare this to CLL are quite mistaken. The diseases are not at all alike, except superficially in that they involve B lymphocytes. The disease is one of the lymph nodes, not the bone marrow, which is the hallmark of CLL."

Er sorry, marginal zone lymphoma refers to the marginal zone of the spleen or mucosa. Nothing to do with lymph nodes. It is still a non hodgkins lymphoma as is CLL. :)