My wife, Tammy, was diagnosed with Stage II, moderate risk MM last February. We'd been skiing two weeks before and she showed no symptoms other than a strangely high ESR (sedimentation rate) which our regular doctor said was nothing to worry about. Note to self: when a doctor says 'It's nothing to worry about', remain worried. Fortunately, Tammy was sent at her insistence to an internist at the Erasmus Medical Centre in Rotterdam where they made the diagnosis.
She was lucky to be placed in the Carthadex clinical trial. After only two months of chemo, she was in a near remission. About the time her stem cells were harvested, she was in a complete remission. She's now home from the hospital and just days after was walking 6-10 kilometres and seems to be no worse for the treatment. The doctor jokingly told me 'He instructed the nurses to call the ICU if they ever find Mrs Fine resting in bed.' She will have another four months of consolidation chemotherapy but we've been told that as she is so responsive, we might consider her MM as a chronic, treatable condition. I have to say that her optimistic, positive approach has been extraordinary. She goes to chemo with a bring it on, let's kill some cancer cells approach. We're not out of the woods yet but we're very fortunate that Tammy's MM is so responsive to treatment.
Tammy really believes in the power of her mind and spirit. When the doctor told her that she was in a near complete remission - with the lowest traceable amount of m-proteins in her blood, she was a bit disappointed as she wanted to be in a complete remission before the stem cell harvest. She, in her own words, told her body to get to work. Next blood test, the doctor - with a huge smile - told her 'No sign of m-proteins!
One other thing about being treated in the Netherlands - when we registered at the hospital at the start of treatment, I thought we would have to file documents with insurance etc. The guy behind the desk said to Tammy - 'Your job is to get well. We'll handle all the insurance business.' True to his word, we have not seen a single piece of paper from the insurance company,
Tammy took the tram to go shopping for this first time since coming home from the stem-cell transplant. She’s been out hiking and jogging pretty much from the first days home. On Wednesday, she will start four cycles of consolidation chemotherapy but at least we know what to expect. Carfilzomid has done wonders for her with minimal side-effects. We’re already starting to plan some fun as soon the chemo finishes, including hiking the ancient pilgrim’s trail to Santiago de Compostela, starting at the French border with Spain and walking across the Pyrenees!
I am currently stage 2 I did 5 cycles of velcade and all this did was cause neuropathy, which caused my haematologist to stop treatment I am now on Revlimid we do not as yet have any blood work results to see what effect if any this is having.
@ chop - don't give up hope! There are so many treatments to try, and this disease does tend to be responsive. How long have you been on Revlimid? Carfilzomib, which I'm on (marketed as Kyprolis) is related to bortezomib (Velcade) but with fewer side effects. It's been approved by FDA to treat relapsed multiple myeloma, or for patients who have tried two prior theapies including Velcade, I was lucky enough to get into a clinical trial for its use for newly-diagnosed patients. Through 4 cycles of carfilzomib, I had very few side effects in fact for the first 3 months it was "business as usual", I was able to work, shop, cook, etc. By the 4th month I had less energy and a very mild neuropathy developing but nothing serious. By the end of the 3rd month I was in Near Complete Remission (in addition to carfilzomib, I also received dexamethasone and thalidomide). I've had my stem cell transplant and now have begun consolidation chemo - 4 more months of the same chemo that I began treatment with, and the docs tell me my prognosis is good. You might ask your doctor if you could be a candidate for Kyprolis in the future.