Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It's pretty interesting stuff. You can read it at http://myelomasurvival.com/index.html
Gary is also an active participant in Cure Talk. He wasn't on the panel the other day, but he did call in and he didn't hold back in terms of mentioning some of things myeloma patients face while treating the disease. Managing myeloma for most folks involves a drug regimin that includes dexamethasone, a steroid, and revlimid. Me personally, I also have velcade and medrol (another steroid) thrown in to the mix.
Revlimid is a funny drug. I take it every other day during my cycle of maintenance chemo, which lasts 15 days. Then I get a break from it for two weeks, before starting up again. Revlimid impacts me by giving me crazy nighttime muscle cramps in my legs. Not always though. But sometimes the cramps in my calves and feet are so bad, that I wake up several times at night because of the pain. Sometimes I have no effects. It's hard to say. Potassium is something that can help with the cramps. But with my kidneys, potassium is something I've had to work hard to avoid or minimize. Bananas have been a no-no for the most part over the past two years. Recently though, I had a banana to help with the cramps. My kidneys have improved enough that I can have that occasional banana. It helped.
Last night though....wow. Lots of aches and pains. This morning still have aches and pains. It was a revelimid night, so I had the leg cramps. But recently I've also had a little of pain in the groin area. I thought it might have been my left nut (pardon my bluntness). We discussed it with Dr Phan and were put at ease that there is no link between myeloma and testicular cancer. Whew. That was my first concern. We actually determined that since I was riding my bike more often, I needed to change my seat, to take some pressure off of that region. It seemed to work pretty well. No more nut pain. But last night, the groin ached like a son of a gun. But I focused on where the pain was coming from, becoming one with it, and it seemed like it was from the groin muscle itself. I'm thinking it was a revlimid related cramp in that muscle. That I can handle.
A few years ago, I jacked up my hamstring. It never really healed correctly, and at times it will really knot up. This was before myeloma. Last night, that knot in the hamstring really tightened up. More overnight pain. My lower back was also a little achy during the night.
Mind you, I'm 51 and some of these things are going to start happening any how. But throw in myeloma and myeloma drugs, and there are times I feel like an old ass man. This morning for instance, I'm generally feeling old. I did ride my bike in today, so the aches and pains aren't limiting me. They're just annoying. There is an actor, Jon Polito, who was in one of my favorite movies ever...The Freshman. He's a myeloma survivor. I watched an interview with him very early on in my journey. He talked about how whenever he has an ache or pain he'd call his doctor, worried that the pains were myeloma related. His doctor would tell him that no, it's just that he is getting old and experiencing some of the normal age related stuff. When I first watched this interview, I didn't really get it. I was too early in the process. Now I get it, you do wonder if every little thing is myeloma related. Usually and so far, every little thing is not myeloma related.
The point is, Gary's question the other day got me thinking. There are a host of side effects that come along with myeloma and treating myeloma. But we power through them. I don't really talk about them. Pat Killingsworth discussed how he finally was doing well enough, that he had a hip replacement recently. That is pretty damn good.
I've got aches and pains. But I work through them. I ignore them. I walk like an old man at times. I stretch. I shake them off. It's ok. I actually feel pretty darn good.
Matt, Great job on the Stress Cure Talk program. You do a great job in representing the subset of patients who has the additional stress of having to work to live. The younger myeloma patient. Gary PetersenReplyDelete
Tonic water with Quinton helps the crampsReplyDelete
After 8 years of taking revlimid 3 weeks on, 2 weeks off and having horrible leg cramps at least 6 or 7 times a night, which makes for a very long night and a very long working day, I have basically turned into my own doctor and try different things. I think I have got something working for the leg cramps. I have been doing this now for 6 nights and haven't had one, not one leg cramp in 5. It has been wonderful! I have been taking 2 Alpha-Lipoic tablets, 1 magnesium and 2 Hyland's leg cramp tablets about 4:00 every afternoon. It hasn't upset my stomach and I have slept so much better! I am a 53 year old woman diagnosed with multiple myeloma 8 years ago on June 15th. I have tried several different chemo options but the revlimed works really well with me. I have not had a bone marrow transplant, just didn't feel right to be pressure into that mess, so as of 8 years I am still here without getting that done. I hope this will help someone else because I know it isn't easy and this really has helped me!ReplyDelete
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