CLL Support Association
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CLL and Merkel Cell

My father has had CLL for 17 years and has been through a couple of rounds of treatment with good results. He was recently also diagnosed with Merkel Cell carcinoma on his face. He had surgery to remove the tumor and 6 weeks of radiation. About 3 weeks after the radiation ended, the Merkel Cell reoccurred, about an inch higher on his temple. I have been communicating with some of the research centers to see if he can get into a clinical trial. If you read the literature, people with CLL are anywhere from 10 to 40 times more likely than the general population to get this extremely aggressive neuroendocrine cancer. I guess this is because of their suppressed immunity. Anyway, he qualifies for no clinical trials for the Merkel Cell, as people who have CLL are excluded from every one of them. This concerns me greatly, not only for him but for me, as I also have CLL. If I contract Merkel Cell, will my options be similarly limited? I guess it would be difficult to have clinical trials of Merkel Cell drugs for people with both CLL and Merkel Cell (?) but wouldn't it make sense?

1 Reply

While this comment is not a criticism, it is a realistic observation: the drug companies develop drugs to make a profit for their stockholders (I own stock in some of them & have worked for some in the past). Their purpose is to get drugs approved for use as fast and cost effectively as possible.

Running clinical trials is very expensive, and the results need to have clean solid statistical data that proves their drug is beneficial to a large number of patients. Mixing patients with CLL into trials with other cancers would really muddy the statistics, since as you observe, we have compromised immune systems and we do not react predictably to many health issues.

So it makes sense to exclude us from trials on other diseases to get those drugs approved for use sooner. Once approved, our doctors can normally use the new drugs to treat us.

I hope your father can be treated to slow down the Merkel cell long enough to have access to an approved drug that can cure it for him and for anyone else that develops this and other secondary cancers.



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