Diagnosed with MM in 2006. My symptoms where only foggy vision. After 9 months and multiple tests it was a diagnoses of Multiple Myeloma. three years of quarterly blood work checks I was prepared for a stem cell transplant. Fortunately I used my own stem cells. Hospitalized for 3 weeks, full remission. Treated with thalidomide for approximately 10 months. I decided to stop the treatment. My feet and lower legs have neuropathy from the thalidomide. It has been 6 years of healthy remission and my blood work is showing signs of increased protein again. Still being followed every 3 months with blood work. Now I am starting to look at current treatments as I have been oblivious of new drugs or treatments (2nd stem cell transplant) is new for my area. I would like to hear from anyone that has had a second stem cell or anyone that
has relapsed and is on treatment now."
Written by
MargaretG
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Margaret, there was a triad of drugs approved by the FDA last Fall, 2015. Personally, with the novel drug therapies available, I wouldn't subject myself to a second stem cell transplant. Are you on Revlimid maintenance therapy now?
Multiple Myeloma seems to be a different disease for everyone who has it. I had 4 high risk genetic factors indicating resistance to treatment with a high probability relapse. I was diagnosed two years ago. I did three, 28 day cycles of Revlimid, Valcade and Dexamethisone followed by an Auto transplant followed four months later by a Allo transplant using my brother's stem cells. Wonderful to have many drug and transplant options, but best approach is dependent on your genetic factors and other factors. This is where knowledge gained from Oncologists and survivors is helpful in formulating your best approach.
Well, as your protein count is rising, it may be time to discuss maintenance therapy with your hematologist. I'm on 25 mg of Revlimid for each 28-day period. That may be a possibility for you.
If the doctor does put you on Revlimid, talk to your insurance company about coverage. If they don't cover it, you may need to ask for an exception. Also, PAN Foundation can help with the co-pay (which is considerable).
Work with your pre-authorization nurse in your hematologist's office to get approval of the drug from the insurance company. Also, Celgene, the manufacturer, has a support system for those unable to pay the full price.
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