Hi Chezza

I too have Myeloma and was diagnosed in December 2022.

The consultant was very good and put me on a lot of pills to start with but i found the steroids the best as they took the pain away .

Then in April i had a stemcell transplant ( that was hard but worth it) and ive been in remission since. But im quite tired a lot of the time and dont sleep too well at night.

Ive been trying to find out what the cancer will effect next and it seems the kidneys are commonly targetted so i was interested to see that you are having a problem with yours.

What are the symptoms ? Have they offered you any help? Maybe a transplant if it gets worse ?

My myeloma started in my lowerrib aand unfortunately by the time thwy found out it has affected my left lung which makes walking uphills very difficult, but we soldier on !

Looking forward to your reply a d hope you keep fightung it

Hi Bendermender,

I don't really have symptoms for my kidneys, I just need to be careful with my water intake. I have had times when I have become dehydrated and this damages the kidneys more, mine is stable at the moment but will never be normal again.  If mine gets worse I will need to go on dialysis. 

I'm glad to have someone with myeloma to talk to as I know our numbers are limited. Where are you based? I live in Cambridgeshire. I have found my hospital so helpful and supportive. Currently I have my antibody treatments every 2 weeks so lots of traveling back and forward for this.  Earlier this year I had a chest infection which wouldn't go away and landed up in hospital for 13 days. My heart decided to join in the fun and wasn't pumping hard enough to remove the build-up of fluids from my lungs.  That was a fun time. But km here still and fighting on. Tell me some of your experiences with Myeloma. 

Hope to speak soon.

Hi Chezza

Did you receive a reply from me yesterday only it looks like my message didnt reach you

No I didn't get a message yesterday

Ill write it again

Hi Chezza24 I have just joined this forum and read your post, I too have Multiple Myleloma and I also have 2 collapsed vertebrae. Since this happened, my stomach has been massive, everyone says it’s due to the collapsed vertebrae as your organs inside have to go somewhere, it is very uncomfortable and I struggle to find clothes to wear to cover it up, I’m interested to know if you have suffered the same problem? 

Hi Denann, yes I have a big belly, I just thought it was due to not being very active. I haven't  heard about the fact that it could be linked to the collapsed vertebra,  that is very interesting.  How long have you been diagnosed and how did you find out about it. Where are you based.  Because our cancer is a rare one I am trying to find out about others who have it.  I have met 1 other person who has myeloma and another lady who has mgus the smouldering start to myeloma. Great to hear from you. Please keep in touch.

Hi Chezza24, I was diagnosed on 31st May this year, it just started with a bad back the previous October, that I put down to sciatica, but it was not going away and getting worse, I’d never heard of it when they told me. I am based in Rotherham, South Yorkshire, I see you are in Camebridgeshire, The belly thing, it’s not like a normal overweight belly, it’s more like a pregnant belly where it starts under the bust and is uncomfortable, I lost 4 inches in height when the vertebrae collapsed and became slightly hunched, so that’s why the doctors have said that it’s possibly because your internal organs are more squashed and have got to go somewhere. Can you tell me more about how you felt after the Strm Cell Transplant, as mine is coming up in a few weeks. Looking forward to hearing from you x