Tuesday, December 28, 2010

Some thoughts on this Revlimid situation...perhaps a false alarm?

Hello folks, and happy holidays.

There's been a bit of chatter over the last couple of weeks about Revlimid and its potential linkage to secondary cancer.  This began when some studies of Revlimid in Myeloma seemed to have higher numbers of people with secondary cancers in the Revlimid arms than the non-Revlimid arms.

I've not yet gone back to Arkansas to look at the specific data, but I have had a couple of conversations subsequent to my last post so I thought I would mention it.

First, I think there is a figure of 8% being bandied about and I think it's being done incorrectly.  The Celgene (maker of Revlimid) spokeperson said that there is an 8% chance that a Myeloma patient -- in general -- would develop a secondary cancer within a given two year period.  Now this, alone, seems extremely high to me.  But that's a separate issue.  The same spokeperson than said that the number of additional secondary cancer occurrences in the Revlimid group was within this 8% margin for error -- in other words, s/he attributed it to random chance rather than any statistically significant impact from Revlimid (or at least made the case that it could simply be random).

I'm not sure how I feel about all that -- a mixed bag, at best, but I don't think the idea that Revlimid increases secondary cancers by 8% is correct.

Probably more importantly, I had a couple of conversations about this with Dr. GD (my maintenance guy) and one of his excellent nurses (who I'll explain in a moment).  I was talking with GD in general about recent trials and I brought up the Revlimid one.  He said that he'd had many people on Revlimid for many years and had never seen a single case of secondary cancer.  That, it seems to me, is very good news.  Anecdotal rather than statistically significant, perhaps, but good news nonetheless.

I mentioned the tandem transplant statistics and GD, despite his mild reservations about some of BB's aggressive tactics, said he believes they do in fact make a difference, do cure some people, and represent a "stop gap" measure until such time as we have a more effective means of managing Myeloma.  Sounds right to me.  He mentioned that he had a couple of patients whom he urged to go to Arkansas for treatment, and they opted for less invasive treatment, and they are both very ill now...as in on their last legs.  Again, anecdotal and everybody's case is different, but it is worth noting.

GD also brought up that with one of these patients, he spoke with BB about how BB would treat.  BB mentioned VDT-PACE as induction (Velcade, Dex, Thalidomide, Cisplatin, Adriamycin, Cyclophosphomide and Etoposide...all of which I had).  GD said that the key to administering that therapy is a great deal of experience with managing side effects and palliative care, and that he (GD) would not be comfortable administering it himself.  Makes sense.  I had the same feeling when I reluctantly went to Arkansas -- I'd rather be the 1000th person going through it there than the first person doing it in California under somebody else.

I went back to GD's the following week and had a nurse I'd not met administer my Velcade.  The other nurses are pleasant enough and good at their jobs, but I feel like I know much more about Myeloma than they do.  However this nurse was extremely knowledgable.  I mentioned Arkansas and she brought up BB.  We discussed Total Therapy, etc.  I was surprised at how much she knew, when one of the other nurses came in and said "oh, you've met E...did you know her husband is Dr. RV?"  (RV, whom I've not mentioned here some time, is a prominent Myeloma specialist out in LA).  Anyhow, this led to a discussion of Revlimid.  RV has had, per his wife, "prescribes a LOT of Revlimid" and has never had any issues with secondary cancers.

More good news!

Speaking of which, all my labs look good.  I get a week off meds next week -- cannot wait -- in preparation for my trip to Arkansas the following week for MRI, PET, bone marrow, and all that good stuff.  Can't say I am looking forward to the process but I am eager to see results, hopefully, in resolution of the four remaining formerly-active lesions in my bones.  If they are all healed up, BB will hopefully breathe a little easier with me.  That's the next hurdle in the road to being cured.

Happy New Year to you all!

4 comments:

  1. THANKS for yet another intelligent, meaningful post, Nick. I've thought that the Revlimid numbers were a bit 'fuzzy', as well. I'm certainly not going to worry myself to death over the matter until data is proven. They told us up front that there was a 1% increased chance of developing leukemia when traversing TT4. I'd be happy to take that battle on when I'm 90! Happy New Year to you and your gang! Have a great trip to the Natural State- looking forward to hearing about your visit. Let me know if there is an official opinion about the Velcade injections vs infusion issue while you're there. Maybe there's a $$$ savings in the injection scheme. Couldn't hurt! Reading your posts and notes gives me little booster shots of 'you're riding the right rocket!' Thank you! BEST, Sean.

    ReplyDelete
  2. Happy New Year... and intending good results to the almost-poster child for MM...

    ReplyDelete
  3. OH I'm so hoping for the subcu injections of Velcade SOON! So much nicer and then business trips and other issues don't have to be messed with. I would imagine giving up the weekly labs will be difficult to adjust to, but I'm sure something will be worked out to get a reasonable monitoring of everything.

    ReplyDelete