1. Taking Senna Wednesday night too late. Wednesday AM seems like good starting point for next time.
2. My jaw / teeth are not falling out of my head. That's good. Didn't want to end up like this poor guy.
http://img385.imageshack.us/i/425x353kz6.jpg/
I think that may be a still photo from a show I saw on the BBC entitled The Worst Teeth in Britain. It was almost impossible to watch but it was also one of the most entertaining hours of TV I've ever seen!
3. I underreported my platelet count the other day -- it's 133, which is good news. Sure to fall again now that I started Revlimid once more.
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Gross! I think if you post any more photo links you need to add a certificate rating ie, 18 for anything else like that. I'm off to brush my teeth.
ReplyDeleteNick, that picture looks more frightening than Multiple Myeloma! Is that what happens if you eat Thalidomide? Sean
ReplyDeleteHey Nick.
ReplyDeleteI'm a MM survivor as well and have been on Revlimid for almost a year after my SCT in April 2009. Recently my back pain which was troublesome since my tumour was on a nerve about Mar of 2009 got much worse. I've heard REVLIMID can do that but my Onc seems insistent that I continue REV since I had a nasty aggressive MM. I was wondering if you can tell me why Kathy G got off the Revlimid? Was it because of some problem, or was it because she had always planned on only 1 year of maintenance therapy.
I also suffer SEVERE constipation and am really worried my bowels will never move without support any more. I've gotten a referral to a pain specialist to see if I can find a friendlier pain med that won't destroy my liver and intestines. I change it up - senna, teas, and even went for a series of colonics.
Appreciate any advice you are willing to provide.
Thanks
hanna o.
Hi Hanna!
ReplyDeleteKathy was done with therapy. She was in a very rare situation where she received an allogeneic transplant from her identical twin -- a syngeneic transplant. This means she has the benefits of an allo transplant -- cure -- with very, very little chance of complications since her body and her sister's body are fully compatible.
Consequently, she didn't need to be on the Revlimid any longer.
This is what I'm guessing, anyhow.
As for constipation, bear in mind the the pain meds as well as Revlimid all can play a role in that. I would stick with the Senna and a high-fiber diet.
I hope that despite these side effects, you remain healthy and victorious in your MM battle!
Thanks for the update Nick. I guess I'm torn about staying on REVLIMID. I don't know if it's really keeping me alive and MM free or if some of those alternates which may or may not be quacks, are something to consider. Many of them say the chemo weakens our immune system and also makes us susceptible to other diseases. I think statistics (which I'm not fond of because you can make them say whatever) are not in my favour. I thought the time to research was while I was still in remission, not when I (again) have to make a desperate decision. I'm looking at also improving my immune system.
ReplyDeleteI'm researching the curcumin (Margaet's blog), PolyMVA, Dr Ghouneum's research, all the way to the highly controversial Tullio Simoncini.
I hear you on the pain meds. I've been trying to get off them but some days doing that means I won't be able to get some exercise, which is probably worse. I try to do cardio, a bit of strength, and have started to ease into the Infrared Sauna.
I wish you also much success in your journey, and look forward to sharing any success on my part with a view to a CURE.
Thanks again