A good friend of mine, long-lived myeloma survivor Paula Van Riper, was recently featured in an excellent Wall Street Journal article about the recent FDA approvals of Kyprolis and Pomalyst. The IMF’s Medical Director, Dr. Brian Durie, is interviewed, along with Dr. David Siegel, chief of the myeloma division at John Theurer Cancer Center in Hackensack, N.J. and S. Vincent Rajkumar from Mayo Clinic.
I read medical reports and myeloma related articles everyday. Most of it is junk; something I sift-through for relevant content. Good medical journalism is so hard to find these days. It is always a joy to read content produced by publications like the Wall Street Journal, Cure Magazine and the New York Times.
But this article is not without it’s flaws. For one thing, while discussing peripheral neuropathy(PN), they quote Celgene officials that Revlimid doesn’t cause PN:
A common side effect of some of the older therapies is a painful condition called peripheral neuropathy, which can cause tingling or numbness in fingers and feet. That is not an issue with Revlimid, Celgene says, and many doctors believe that won’t be as much of an issue with Kyprolis and Pomalyst.
I know this isn’t true. My PN has gotten progressively worse–to the point I can’t write and can barely print, my fingers are so stiff and my feet numb and burning–while using Revlimid over the years. And a number of other survivors I have spoken with while visiting myeloma support groups around the country have complained of the same.
Nit-picking aside, journalist Jonathan Rockoff has done a commendable job writing a feature that is informative for the layman as well as experienced readers.
Oh yes, back to Paula. Paula was diagnosed 13 years ago. She is still working a challenging job as an Assistant Dean of Students at Rutgers University in New Jersey. I know her through work we have done together for the IMF, including covering ASH together in Atlanta last December.
Paula is a delight; cheerful and upbeat, fiercely intelligent and full of hope. She was kind enough to forward me a link to the article I can share with you without needing a WSJ subscription. Enjoy:
New Drugs Slow a Fast-Spreading Cancer
Feel good and keep smiling! Pat
March 9th, 2013 at 9:46 pm
Ha! Ain’t that the truth! Celgene loves to deny that Revlimid doesn’t cause all sorts of side effects when it does. Just because they haven’t heard from a bunch of patients who take it, they think it doesn’t do this or that. There a lot of people who won’t voice their complaints, but that still doesn’t mean Celgene should outright deny stuff. Makes me mad sometimes….
March 10th, 2013 at 1:24 am
Yep. Everyone is so positive and optimistic. And that’s good! But I hear nearly everyday from someone that can’t take Revlimid because they develop severe rashes, neutropenia and/or fevers…
March 10th, 2013 at 10:45 am
Hi Pat,
I see your point about lenalidomide and neuropathy but I wonder how can that PN be distinguished from bortezomib as the causal agent? I suspect this is why the Celgene rep said what he did. It is likely there is no data when lenalidomide is used as a single agent of patients developing PN.
Have you seen reports of lenalidomide without bortezomib of patients getting PN?
OTOH, when they ask patients on lenalidomide about PN, it seems they do not differentiate whether they are on multiple drugs, thus…we see reports, such as this…
http://www.ehealthme.com/ds/revlimid/neuropathy+peripheral
March 10th, 2013 at 3:31 pm
For once an easy answer to a technical question, suzierose! I never used Velcade during the first four plus years of my therapy. Just Rev/dex and Rev along for the last three years. My PN became measurably and progressively worse as the years went on. I was more than willing to put-up with it since the therapy was working so well for me. Strong anecdotal evidence Revlimid causes–or at the very least aggregates–PN. No doubt in my mind. Now you know why I was able to respond so critically to Celgene’s statement. Just want everyone to know I’m not being fast and lose with my premise. Add dozens of testimonials from others and I’m convinced. So why does Celgene continue to deny it? I’m not bent-out-of-shape about it all–it is what it is. I’m just saying…
March 11th, 2013 at 12:13 am
Hi Pat!
Ahhh, good to know! I did not know you had used Rev WITHOUT bortezomib initially.
Great feedback. Thanks for that insight. Valuable information to know.
I think Celgene continues to deny it because the majority of use is in combination with bortezomib.
Your experience though gives reason to pause. PN is not listed as an AE in the lenalidomide label.
But patient experience trumps all!!!
March 11th, 2013 at 12:19 am
OOOPS!! take that back…label says:
peripheral neuropathy (5.4%),
March 11th, 2013 at 8:36 am
I didn’t think the label listed PN. A reader emailed me confirming that–then added it mentions, “possible numbness and tingling in the hands and feet.” Sounds like PN to me!