Hi All. I am 59 and 109 days post SCT. Induction therapy was tolerated well and we all know what the SCT is, from what I have been told I was a textbook and very lucky to have been so. I had my BMB two and a half weeks ago, the Lab won’t report on it...
I’m not sure if this should be in the ‘general' forum or not, but I at least know that nobody here will think it inappropriate or gloomy (as non-sufferers sometimes can). I am in excellent health at the moment (SCT 12 months ago, 66yo Male, good response...
My sister went through myeloma chemotherapy earlier this year, followed by an autologous stem cell transplant. She has now started lenalidomide as maintenance treatment. Her immune system is very low, and she’s been unwell for the past two months, from...
Hello! new here, I’m on this trial and just wondering at others experience? My nurses and triage team are awful at getting back to me etc, I had a reaction to one of my meds 2 weeks ago, co-trimaxazol head to toe rash, took them 2 days, numerous phone...
Hi everyone, Recently diagnosed with POEMS disease (plasma cell infiltration greater than 10% in bone marrow). I have started DVrd chemo and will have autologous stem cell transplant in a few months. Has anyone else been diagnosed with POEMS? Apologies...
Hi everyone. This might sound an awfully silly question, but what does bone or bony pain feel like? I have been in remission for nearly six years now, thank the lord. But I am worried that I am getting shoulder pain that I do not recognise as muscular...
My husband has had severe painful neuropathy as a side effect of taking velcade which has now been stopped. He no longer has the pain but still has the numbness, tingling and difficulty walking. I wondered what other peoples experiences are like of...
So I was diagnosed with MGUS around two years ago. Terrifying to say the least when it was picked up totally unexpectedly at the grand age of 37. Since then my white blood cell and urea levels have increased steadily yet the paraprotein stayed fairly...
I’m one month post stem cell transfer for Myeloma. Nausea started a few days later but I still have a lot of sickness. I was discharged on Odansetron and Cyclizine. My consultant prescribed Levomepromazine but it knocked me out so only took it once. A...
Hi All i was diagnosed in June, now going on a trial next week and I not looking forward to it at all - it’s the unknown I don’t like not being in control. I was told I am high risk SMM like 80% in so now got this opportunity to do this trial with the...
