Hi Karen

I have had a stem cell transplant, unfortunately my kidneys failed during transplant so I’m on dialysis. That happened in 2012. My advice would be to drink plenty of water during transplant and use corsodyl as your mouth wash they won’t supply they give a cheaper version.

I not going to lie to you it’s a tough journey but there is…[Read more]

They took me off CTD because I was getting small blood vessel clots on my right leg. Thanks Dave, Eve and Helen for your comments, it's much appreciated. I obviously have a lot to learn about this MM however I'm feeling positive at the moment and I do take much encouragement for positive results like the paraproteine count.
Ivan

It looks like it was the small blood vessels on the leg was getting blocked. They increased my clexane injection from 40mg to 150mg and I was told to stop all chemo medication until this leg cleared up. Well the leg did improve, the big toe is still not completely better but they have taken me off CTD and started me on Velcade. Had my first…[Read more]

I rang the unit and the nurse told me to come on in. The Dr tested me for Sciatica and told me it was not that. She thinks it may be a trapped nerve and the big toe issue was more than likely peripheral neuropathy which can be a side affect of the Thalidomide. She has given me Pregabalin Cap to take twice daily. I can't walk any further than…[Read more]

I did ring the unit today and they told me to go see my GP. I have no evening number to ring, I will ring the myeloma.org.UK nurse tomorrow.

Thanks for all the advice.
Ivan

I do wish I had been drinking, thanks that's a good idea I'll ring tomorrow.
Ivan

Firstly I would like to thank everyone who has left me comments and advice they are all much appreciated and I have to say, Jet you page is fantastic keep it up I'll be reading it regularly.

Its 3:30 in the morning and I'm not sleeping as I'm a little angry and upset so I thought I would drop on here and view my comments cos I know you all…[Read more]

Thanks for that Carol I may just take you up on that if i feel grumpy.

Thanks Carol

That is great information most encouraging, I'm on my third day of CDT and still not reaction to any of the tablets thank goodness although It's still early days, the only thing I'm getting is the hiccups and if that's the only side effect I'll be so glad. Did you get treatment in 2005 if so what treatment did you…[Read more]

I have just started CDT today so I'm on my way. Well I have started CD and will be taking the T at bedtime. Now its a waiting game. Very informative Eliz about your experience I'm not sure how I will react to any of this however I'm optimistic. I cant believe that I have just taken that many table I normally don't let a tablet pass my lips. Boy…[Read more]

Eliz

Thanks for that, how did your SCT go in August and how have you been since.

Ivan

Eve

Yes they did give me all the information about taking the tablets. I'm most impressed with the nurses and my Consultant at my hospital in Antrim N.Ireland (Laurel House), I'm luck in that's its only about 10 minutes from my house.

I'm at my caravan right now in Portrush (north coast of N.Ireland) its my retreat and I have decided to…[Read more]

It was a 3 hour consultancy where we talked about everything on my list and she was so impressed by my health that she asked if I wanted to start treatment right away as I was in good condition to fight it. So guess what I'm about to start treatment in a couple of hours for now. I have all the tablets and injections to start my chemotherapy in…[Read more]

Thanks for all your reply?s its much appreciated, it?s good to know that I?m not alone. I?m going to the doctors tomorrow with the list of questions and my partner Cathy is coming with me, I think 4 ears are better than 2 in this instance. Like you Helen I?m thinking they may have the wrong name on the test tubes. I went into hospital for tests…[Read more]