Hi Bridget
Have finally finished my velcade!! Although I know it will take me a week at least to start to feel human again, have now got to wait til the middle of Nov for my pet scan to see how well its worked as like you my pp's haven't risen.
I wish that they wouldn't leave us til we are desperate with pain before they do radiotherapy, I…[Read more]

Hi Bridget

So glad to hear your pain is under control, long may it last! I don't know where I'd be without radiotherapy!

Hope you get the go ahead for the bendamustine, let us know how you get on

Love Sharon x

Good for you Dai!!! I am glad for you that you don't have to have anymore velcade and that you have had a CR 😀

I hopefully finish my velcade cycle 8 tomorrow and I will be glad as I have had enough! I am soooooo tired! I hope my scan shows I have had a CR too, have got to wait until mid November for it though.

Wishing you a long…[Read more]

Hi Eve
Sorry I haven't been on the site for a while, I do look in, but don't post very often :-0 . I also wasn't very well last week had temperature ,sore throat and lost my voice! So my velcade was delayed for another week so hopefully will have my last one tomorrow!!!!! Will be so relieved as I am so tired, even 20mgs of dex dosen't keep me…[Read more]

Hi Eve

Yes its very difficult being on the other end!! I am 41, I was 39 when I was diagnosed, thats the hardest thing for me as I have 2 children, 15 and 8 and I probably won't see my youngest grow up :'-( .
I don't mind helping you with as much info as I can give, I did have radiotherapy on all three tumours, however I have some lasting…[Read more]

Hi Eve
Sorry for not replying yesterday but felt really rough, I was ok for the first few cycles, but by cycle 5 I began to struggle especially since they introduced cyclophosphamide at cycle 5. Like Slim I have velcade on days 1,4, 8 and 11 of 21 day cycle with 20mgs of the dreaded dex on the day I have velcade and the day after and 500mgs of…[Read more]

Bridget

I am so glad that they are finally doing something for you. I think its very wise to try hanging out for the RT and not to go down the methadone route, not wishing to be too negative about methadone but as I used to work as a staff nurse in a hospice and one of the consultants was very keen on the use of methadone for pain relief but we…[Read more]

Hi Eve

I am on my 7th cycle of velcade with cyclophosphamide. When I had my sct in Feb 10 I went the whole way having an allo sct with donated cells from my brother, which means I cannot have a 2nd sct. It failed fairly quickly with me developing a plasmacytoma on my spine in December and then 2 further tumours later I started velcade in…[Read more]

It will be interesting to see what they say Tom, I will have to ask my consultant when I see him next what he thinks too as he is the main myeloma specialist in Birmingham!
Unfortunately I don't think I will be able to wait 10 years either Eve, I have IgA myeloma and it tends to be more agressive than some of the others and my allo transplant…[Read more]

Hi Shirls
I'm glad to hear that things are going well for you apart from the GvHD, but as you ssay that is a good thing! I haven't posted for a while as I have not been feeling too great on velcade, generally very tired, then I'm awake in the middle of the night thanks to the dex!!!!!
I had GvHD following my allo, mine appeared about 3- 4 weeks…[Read more]

So sorry to hear your news Susan, My thoughts are with you

Love Sharon x

So sorry to hear your news Tina, my thoughts are with you

Love Sharon x

Hi Sandra

Well as you know I had mine done last year in February 2010, I was 39 when I was diagnosed and I decided to go straight for the allo (bull in a china shop approach!) so was still 39 when I had my transplant. My feeling was the younger and fitter I was surely gave me the best chance! Also only having the one brother who turned out to…[Read more]

Hi Andy
What a shock for you! At least they took the right course of action and I'm glad you are back home like me! My oramorph hasn't been used for a week again, so I think the radiotherapy is doing its trick, I hope your radiotherapy helps the numbness in your legs, it can take a few weeks to fully have effect though. Wishing you all the best…[Read more]

Hi Shirley
Glad to hear that things are still going ok for you! They are finally reducing me off cyclosporin too, although its only taken them 12 months! LOL! I think it has more to do with me needing the next course of treatment though!
Wishing you all the best
Love Sharon x

Hi All
Gaye I am glad they have sorted out a plan for your radiotherapy, it seems to have taken them a long time though. Glad you got your 2nd course of Pomalidomide delivered!
Jo this was the patient guide to spinal cord compression that I looked up on the NICE guidelines but you can just search the guidelines yourself if you want,…[Read more]

Yeah they have finally let me up again! The physio came round yesterday and after checking with the drs i was given the all clear to get up! Hopefully will be able to go home tomorrow when they have given me my last dose of radiotherapy.
Pam, you amaze me as you so have been through the mill with this disease and yet you still manage to look on…[Read more]

Hi Bridget
I soooo know how you feel! I am also back on 40mgs dex and don't feel i had quite recovered from last months blast i received! I should have been trying on my bridesmaid dress this weekend…….. I will look awful by the time the wedding arrives in june! They should have asked my daughter instead!
Have as much as a moan about this…[Read more]

Thank you all for your positive thoughts and wishes
I have to admit that the only reason I knew to quote the NICE guidelines was that i had been to see another Dr the day before about my pain and she told me too! I wouldn't have known to otherwise, but i did quite easily find it on the nice guidelines website!
I am back on the dreaded dex! So…[Read more]