Monique Doyle Spencer shared with me a letter she received after writing her recent op-ed about the potential value of henna in ameliorating side effects of an important cancer drug. I reprint it with permission of the author:
I was very interested in "Anybody Want a Zillion-Dollar Cure Idea" (Globe Op Ed 8/1/08). My twin brother was diagnosed with colon cancer and was also put on chemotherapy using Xeloda. He suffered mightily with the same side effects as Ms. Spencer. We constantly asked "Can't something be done to relieve this torture?" After four years of suffering, he died last May. It is sad to know that the drug company could have conducted a study of this simple antidote or noted on their website the relief that some people had received. Shame on Roche Pharmaceuticals and the industry.
When I wrote about this below, at least one commenter suggested that it would be difficult for Roche or a similarly situated pharmaceutical company to make recommendations about this or another antidote, citing legal and regulatory issues. I don't know enough of the law to address that. I also have to assume that the response Monique received to her queries never made it up the full chain of command in the company and so might not have been reflective of the view of senior management. So to be fair about all of this, I am going to do my best in the next few days to contact my CEO counterpart at the company and make him aware of all this and see if he is interested having some of his folks brainstorm with our people and others like Monique about how to get the word out or do more research on this matter.
It would also be interesting to learn if the company could have even linked or a referred a customer to this--since it had not been approved or investigated by the FDA. Could you find this out? If, as I fear and believe, the drug company was totally helpless to make this suggestion to a patient--regardless of how high the request made it up the chain of command--or to the patient's family, simply because of FDA, then henna may, of course, not be the only available, effective, and not widely known palliative.
ReplyDeleteDear Mr. Levy,
ReplyDeleteI have been enjoying your blog - I am becoming a regular reader.
Do the companies have anyone called a community liaison or some such? This would be a perfect job for them.
I agree that this could be very helpful to oncology patients. There must be someone who wants to do a clinical trial, right?
Dr. JT
Interesting question about the FDA issue. The FDA has approved henna for the hair but not the skin, but that is because there is so much tattoo henna at festivals and boardwalks and such. Tattoo henna may contain harmful additives. Pure henna doesn't.
ReplyDeleteSince the story ran I'm hearing from people with the most heart breaking stories of pain. So is WBZ radio.
Yes, Dr. JT, my hope is that a pharmaceutical company could extract the active ingredient from henna and test that, perhaps in lotion or ointment form. Who else has the ability to do that -- and also has a big interest in it, too, since people would be able to take more Xeloda.
I'll be curious to see what the answer may be to your question, Anne. Truth is, oncologists use many off-label products for side effects. If something works, they'll recommend it. They seem to be able to live with the liability risk, and I bet it's because they see the patients face-to-fact. Or face-to-foot!
Hai Mr.Levy I was so interested to read your's blog. I agreed to this oncology patients. It might be they have to been get success in long life.
ReplyDeletethankyou
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