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 know when I had mine on my spinal tumours earlier this year I was crawling the walls and morphine didn't touch it!
Love Sharon x
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 remission
Love Sharon x
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 awake any more!
I am glad to hear that Slim is feeling better and the pain in his chest has eased, you made me smile about him decorating the carpet!!!!
Love Sharon x
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 spinal cord compression with altered sensation in both my legs and a few numb toes!! I had some spinal cord compression from the 1st tumour, but it did right itself after, the pain was horrendous before radiotherapy, so I knew what was happening with the 2nd tumour and pushed for an mri scan. It was the 3rd tumour that did the damage as I was due to start velcade on the Monday but the week before my pain had started to increase dramatically, but I thought I could hold out for the velcade to start, unfortunately I developed numbness and altered sensation in my legs the Saturday before, it has improved some, but not as much as I hoped. At least the radiotherapy sorts the pain out fairly quickly!
So if Slim has tumours on his spine be aware if his pain increases dramatically or any numbness.
Love Sharon x
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 cyclophosphamide once a week. Tomorrow is day 11 so my last dose of this cycle and my next cycle will be cycle 8 and my last!!!! Yippee!!!
I have had no bone marrow biopsy, because my consultant believed it would probably be clear and haven't pushed as I hate them!!
I would certainly ask about a pet scan when you see the consultant and I would certainly not be waiting til October!! If they can't bring your appointment forward ask to see the specialist nurse at the hospital. Pet scans aren't used very often for myeloma so not everybody knows about them, but it certainly useful to find out the extent of activity, my initial one showed lots of activity in my spine (no surprises as I had had 3 tumours there!) and activity in my right shoulder, my mid treatment scan showed no activity on my spine 🙂 but still some activity in my shoulder :-S .
I wish you and slim luck
Love Sharon x
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 often felt it didn't always work as well as it should. If it were me I would only use it in desperation!!!!!! But then I know that when tumours cause pain, nothing touches them but RT!
So wishing you lots of luck Bridget
Love Sharon x
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 April. Typically as this disease is so individual my paraprotiens have not gone above 2! So the only way they have been able to monitor how well the velcade has worked is by having repeat PET scans, before treatment, mid treatment and hopefully I will have one at the end of my treatment. However my local hospital are not keen to continually fund PET scans which have to be done in Birmingham, so I am not sure how they intend to monitor me otherwise!!! As you say mine appears to be mainly in my bones, but my consultant has been kind to me and has not done lots of bone marrow biopsies, I don't think I would be too happy if I had to have one every 3 weeks!!!!!
The PET scan is a ct scan, but you have a radio-active solution injected into you before the scan which then highlights any active disease.
Take care
Love Sharon x
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 only lasted 10 months so I am already on 2rd line treatment.
However I will be up for any trials!!!! Lol!
Love Sharon x
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 after the transplant and I had a skin rash all over my chest and neck and the lovely diarrhoea! I was put on prednisolone (another steroid thats just as bad as dex!) it took about 6 months for me to get off the steroids and of course once the GvHD effect had gone my mm came back!! This won't be the case for you as your treatment has been so much different to mine!
Wishing you luck
Sharon x
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 be a match just seemed to indicate to me I should go for it! My consultants mentioned it fairly early after diagnosis, while we were discussing sct's. I don't think he expected my brother to be a match though and only discussed it briefly. I remember I was on the day unit having my pamidronate when he came to tell me my brother was a match!
Oh well I relapsed in December and am about to start velcade, even though my paraprotiens and lightchains are ok I have further bone disease.
I firmly believe if I had just had an auto sct I would have relapsed quickly so would have been going down the allo route anyway!
Take care
Love Sharon x
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 Andy
Sharon x
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
