Hello

Hi everyone, 

This is my first post on a forum. I am 68 and here because I am just about to start the third cycle of immunotherapy treatment prior to having a stem cell transplant and I would like to learn more about other people's experiences who have gone before me regarding the transplant and their recovery afterwards. I have to admit to feeling pretty daunted by what lies ahead for me and I would like to prepare myself as much as it is possible to.

My myeloma experience started more than ten years ago. Back then I needed to have a year of treatment to get rid of hepatitis, which was successful, but during the hospital 's pre treatment investigation they found I would develop multiple myeloma at some stage. For much of that ten years I was MGUS but about either months ago my paraprotein began to rise steadily until late last summer it was getting into the 40's. I had an MRI which showed no lesions, my kidney function etc was all good - and still is - and a bone marrow biopsy showed I had about 20 percent cancerous cells. I felt absolutely fine but in October my spine fractured badly, it took quite some time to diagnose as I thought it was a chiropractic problem but eventually I had an x-ray and the fractures were discovered and also that I have osteoporosis. This was an enormous shock to me because in all of my admittedly brief conversations with the oncologists at the hospital, the risk that I might develop osteoporosis was never mentioned and looking back to when I had the MRI, I am now surprised that the hospital did not do a bone density test as part of the procedure. I had a great deal of pain from my back as one vertebrae had collapsed entirely and another badly damaged. I saw. the oncologist at that time and he did not tell me that the osteoporosis was associated with myeloma, in fact I asked him and he said that it wasn't. I only discovered that it was when I talked to a Osteoporosis Society nurse. I had a great deal of pain from my back and had - still have - morphine patches to help. In February, without any warning, my sternum fractured but again this was not diagnosed for some time until I insisted that I have an x-ray. My sternum fracture then prompted a multi disciplinary meeting at the hospital and I was told that they had decided that I should have a stem cell transplant, and so I am now on that journey. I have found the immunotherapy treatment quite intense emotionally, the steroids, 10 on Fridays, 10 on Saturdays made me desperately low and anxious on Mondays and Tuesdays so it has been agreed that I now take 10 on Friday, 5 on Saturday, 3 on Sunday and 2 on Monday and that has helped this past week. I find I am shaky, my thought patterns seem to flicker, particularly when I have the steroids or a day after. Physically I am still able to do things ok, but with due respect to the fragility of my spine. I am finding that the situation I am in overwhelming at times, my wife and daughter are wonderful and I try to keep positive and upbeat for them but it is hard and I have surprised myself that I find that I am not as stoic as I thought I might be. The damage to my spine has knocked my confidence hugely. I can't help worrying about the challenges that we as a family are now faced with. My family and I have slipped into a different world where myeloma is ever present, all the time, it's not something I or my family can shake off. I have yet to speak with the oncologist about the stem cell transplant and what respite I might have if it is successful. Last autumn he mentioned maybe five years but my researching here and there finds that it could be much less than that, can it be more?  I am sorry that this post is rather a gloomy one, I do have some good news and that, according to my last blood test,  my immunotherapy treatment is going well, my paraprotein has gone down from 40.4 to 10.1 after just two cycles and my liver function etc are according to my oncologist, "excellent" so the treatment, so far, is working!  I'm worried about the transplant procedure and the recovery period afterwards.