Hi Ian

pleased to hear the good results re your transplant, what does the t cells being 95% mean? It sounds like you are doing really well so hope it continues that way.

I have decided to wait and see about having the mini allo till I know the outcome of my bone marrow biopsy in December.

all the best

Wendy

I have got this too, itchy face,scalp,neck and am also a bit spotty and I am about 9 weeks post transplant. Interesting that it could be GVHD even from your own cells back. I take an anti histamine each day and use E45 and try not to let my skin dry out. Otherwise I dont think there is much one can do except try not to itch!

And I do get dry…[Read more]

Hi Kay,

I am at the same stage as you, about 7 weeks post transplant and like you I got off relatively lightly from some of the side effects of the high dose chemo and was out in two weeks and 1 day. I also get very achy bones expecially after walking and sometimes I can hardly walk up the stairs! Also get very tired especially in the…[Read more]

Hi Jim

sorry that you had to join the group but hopefully you will find the forum very helpful. I know I have. I was diagnosed last December when 49 and was previously fit and healthy and it was a complete shock to me and I am still coming to terms with it.

I see you are going to be treated by Christies so you must live in Manchester like…[Read more]

Hi Shirley

Am so glad you are doing well post allo transplant and are in complete remission. What sort of graft v host problems are you having? Did you have the full allo ie high dose chemo and then the transplant of cells from your sister? What did your consultant say about the risks and possible remission period?

Take care

Wendy

Hi all

Thanks for all your replies and suggestions. I think I will ask for a second opinion, Debs can you suggest anyone in particular at the Royal Marsden? You may not have been offered it because you are still on the Myeloma X1 trial and I came off it due to being intolerant to Thalidomide although my consultant said she would have taken me…[Read more]

Hi all,
I haven't been on the site for a while as waiting for my SCT which took place on 1 September and out of hospital on 15th September which I was pretty pleased about and I seem to have got off lightly compared to some people. Mouth relatively ok, mild diarrhea and sickness and nausea. I was expecting to have no appetite but after a couple…[Read more]

thanks for all your replies, I was discharged today from hospital (wasnt staying on haemotology ward) feeling alot better. The tests didnt show any particular bug and the docs reckoned I just picked up something in Portugal which because I am immunosuppressed couldnt fight off as easily. Anyway glad to be home and not rushing to the toilet every…[Read more]

I think your mum
Is doing really well. I started on thalidomide in January but was unable to complete the first cycle due to an horrendous skin rash. I also felt fAint so they reduced the dose. I remember the feeling of being in a black hole and very tired. I started a second cycle after the skin rash cleared but had to stop
Again due to nerve…[Read more]

well at least its not just me, I have an appointment with an ENT specialist on Wednesday and shall see what they can do, however I have a feeling it will be nothing so will just have to try and enter a state of blissful ignorance as Dai does.

Wendy xx

Hi Derek, I am on CTD (Day 21) of the first cycle and getting numbness and tingling in my spine especially when tryinng to sleep at night and extreme shakiness. I have reported it to the doctor and they say it can be one of the side effects but didnt advise if there was anything I can do to alleviate it. I will take Geoffs advice and ask the GP…[Read more]

Hi phil I would like to join the under 50's group. At 49 I think I just qualify. I was diagnosed with light chain myeloma on 24th Dec following admission to hospital with kidney failure. I am still coming to terms with it and started treatment with CTD about a week later but I thought better sooner than later.Its all been such a shock and I cant…[Read more]