Renal Cell Live!

Thursday, March 22, 2007

Alphabet Soup: EPO/FDA, Part II

Well, the EPO/FDA story continues.

A New York Times article yesterday outlined the ties between physicians and pharmaceutical companies, using Dr. Allan Collins's relationship with Amgen as the lead example. Dr. Collins is highly influential, and is the president of the National Kidney Foundation. Amgen manufactures Aranesp. In 2004, Amgen granted $1.9 million to the Minneapolis Medical Research Foundation. Dr. Collins was the designated senior researcher on the grant. [NOTE: Dr. Collins did not receive these funds personally]

Couple that with an FDA announcement that its advisers will no longer be able to vote on product acceptance if an adviser has received more than $50,000 from the product's company, and my friend Richard's comment ("It's not a very encouraging article") pretty much sums up most people's reaction to the whole mess. Even if there's no impropriety or conflict of interest, it just doesn't look good.

See more on the whole conflict. It's very interesting to see mainstream media coverage on something I live with daily.

Both Dr. G and Dr. SC feel confident that if I need Aranesp, they can justify prescribing it and can clear it with my insurance company. But I'll be calling my insurance company anyway. Am I being too anal about this? Perhaps, but I'm also on a fixed income and I don't want to get surprised by an unexpected $4000 bill.

Results from Cleveland: I'm still stable (slight growth again in the right lung lesion, balanced by slight reduction in the largest liver lesion). My joint and back pains are probably another Nexavar side effect - it's not just that I'm getting old! - and my Dilaudid use (now averaging 2 doses per day) didn't raise anyone's hackles. And I discovered Lindi Soothing Creme at the pharmacy; it's an over-the-counter formulation for hand/foot syndrome that seems to be pretty effective.

Do I need to make a disclaimer here, that I have no relationship with Lindi?!

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2 Comments:

  • Hello! I just found your blog via a technorati search on Nexavar. : )
    My husband has kidney cancer, spread to the lungs and liver; he's on Nexavar exclusively, and has been taking it for abouyt 4 weeks. The reason I was looking it up is that in the last 10 days or so his feet have been so much worse...from the Nexavar. He hates it, of course because he otherwise feels great, and his mobility means a lot to him(ee, that sounds like the all-time "duh!" doesn't it?).

    Anyway, greetings! I just read aloud your bio; we are 44 & 49(him), live NOT on a farm, though I sure wish we did--no kids, 2 cats, 2 dogs(lab & pointer), and two horses--you can see we really need that farm. ; )
    (And as I told the S.O.--look! you have a twin online here!)

    My dream is to live around eastern PA, a place we've gone from time to time...L.A. is where I grew up & work but it's a hot, unlovely place.
    I'll be backtracking & reading your blog...so will Pete(husband). Cheers and thanks for keeping it up! : )
    -Jenny

    By Blogger Jenny Lerew, at 1:25 PM  

  • Jenny & Pete,
    I hope you find things here that will be of use to you!

    I am lucky - Dr G lets me go off Nexavar for short periods of time when my feet get bad. It does clear up quickly and there's no "proof" that interrupting the daily dose lessens the drug's overall effectiveness. I don't know that every oncologist subscribes to this but it might be worth discussing.

    I also take Dilaudid; it's effective against the pain yet allows me to function normally. Again, many oncologists may not prescribe but it's worth asking about.

    Good luck on getting that farm - yes, you need it! Keep in touch please - lc2

    By Blogger rcclive, at 1:19 PM  

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