Hello everyone,
It has been a long time between messages, but we have been waiting on doctors..Our usual story. Mum tried Thalidamide with no success as she suffered the severe constipation. Then we thought we could try Velcade ??? Doctor could not fill in paperwork and didn't know if mum was a candidate.
We waited yet another month with mum's pain getting worse and her cravings for citrus and water inclined. We knew things were not good.
I often asked doctors what stage she was at and what type of MM mum had but I was always told that it is hard to measure as everyone is different. I discovered through research of my own and with the help of our FAMOUS CATH!!!!! that she has Bence Jones Myeloma or Light Chain Myeloma. Which can cause nasty Kidney damage...
Today we finally went back for the bad news.
Mum has gone into Kidney Failure and her MM has progressed. We now are able to be treated with Velade but still have to wait two weeks. Whilst we are waiting mum is on a very high dose of Dex, which causes bad side effects for mum. She becomes a giant bullfrog.
Has anyone had renal failure and please tell me of your experience good or bad. We have been told that mum has a 70% chance of recovery from kidney damage if not dialysis is the other option..
Cath/Bob I was going to email you seperately but thought I would post a message to here so I could get some feedback. I was an absolute mess this morning (worse than mum) but I am now focused. I had a word with doc on the ward and expressed my frustrations as Outpatients told us that the Registrar was trying to call us for the last few days??? BULL!!!!
I am working on mum to go to Peter Mac once this ordeal is over. For a second opinion...
I dont want to force her but I feel it is time I really intervened as I am not happy with the information presented.. I believe that I dont want to just here the verdict but I want to know WHY AND HOW they reached thier conclusions...
I will keep you informed and Cath my dear....Iwish you well you are my mentor and Im happy I have you....Please call me if you wish or send a private email...XOXOXO
Melanie