[davidainsdaleParticipant]

Hi

Sorry to hear that your dad had joined the Myeloma club.

His problems sound similar to my experience,but they do say everyone is different. My Myeloma when initially diagnosed was at a pp of 54, this caused spinal lesions and compression at the T7 vertebra causing a loss of about 4 inches in my height. I was in alot of pain ( agony ) for the first six months caused by what I think they called a plasmacytosis tumour pressing on the spinal cord. I was more or less in a wheelchair and couldn’t walk. This was picked up by an MRI scan. 10 sessions of radiotheraphy and the CTD gradually reduced the pain. Two years on and much improved, just returned from holiday in Dublin which at one point I thought I would never do except in my wildest dreams, so there is hope.

Hoping your dad has a speedy return to good health.

David

[davidainsdaleParticipant]

Hi Leanne

Sorry to hear that your mum is having a rough time at the moment with the treatment. They do say that everyone is different and if in any doubt to consult the experts.

I had a lot of fluid retention whilst on the CTD regime, swollen ankles,legs, tummy and a puffy face. Coincidentally I had my eyesight tested for new reading glasses and the optician said that I had high pressure in my eyeballs. I checked this out with my consultant who said that it was most likely the CTD and once I had finished the course of tablets things did settle down fairly quickly, but it was some months before I felt all the fluid had gone from my system. Although it was difficult for me, due to spinal damage caused by the myeloma, I found that walking did help to get my body back going again.

Hope this helps and that your mum starts to feel better.

David

[davidainsdaleParticipant]

Hi Val

This is my first post on the Discussion Forum since my diagnosis of Myeloma in March 2013.

I was pretty much wheelchair-bound and immobile for much of 2013 due to a cytoplasma in the T7/T8 spinal vertebra. Like your husband, I had radiotheraphy (at Clatterbridge) which helped reduced the pain and then on to CTD. As you may know there are various treatment plans for CTD, I was on the most aggresive which meant taking 20 dexi tablets on Days 1-4 and Days 12-15 along with a host of other medication.

Lots of side effects including swollen feet, ankles, face and abdomen. This did eventually disappear but in my case it was over 12 months, exercise eg walking seemed to help. The other main side effect was muscle weakness and by the end of Cycle 6 I was pretty worn out. That all said, my pp level came down from a starting level of 54 to about 2.8. I had a Stem Cell Transplant 11 months ago and am in remission.

During the course of all this I lost about 4 inches in height and put the beer belly down to the fact that my insides have been squashed. Am now able to walk a couple of miles and do most jobs around the house with common sense not to do to much. I am very grateful for the treatment and improved quality of life.

Hope this helps.

David

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