Hi
You have every right to think that your life will never be the same again, it wont be the same BUT that does not mean it is the end of life. Your life will be very different but you will come to accept all the changes over time and life will still be good. Like you I was diagnosed with mm and mutiple fractures of the spine, 9 in total and a tumour in the neck that had to be removed and my neck stabalised with plates which means my head is in a fixed position with no movement left or right or up and down. It seems awful but it is surprising how quickly you adapt. Of course I cannot drive any more but despite all the disability life is still good. I was diagnosed in 2011 at the age of 58 I had 6 months ctd and radiotherapy then a stem cell transplant in Kings College London and after 3 months of that I was in full remission and off all medication and I have continued in that vein ever since. I have suffered three more fractures since but I consider myself very fortunate indeed to still be in remission 6 years since the transplant and completely drug free. I wish you well with your treatment, there will be very tough times ahead but the new drugs are now much more effective and treatment greatly improving all the time. So look on it as a new chapter rather then the end of the book. I live life to the full and hope to continue for a
good while yet . Stay strong and keep positive. Liz
appologies for repetition in post it seemed to keep diasappearing as I was typing
Hi
I too had a high initial parraprotein level of 67 at diagnosis and after 6 months of treatment with cdt it came down to 8. I was 58 at diagnosis with several fractures in my spine and
kidneyproblems. I had to have operations to stabalise my neck and a tumour removed. I was stage 3. I could not decide whether to go for. the transplant or not. I spent several weeks researchinand talking to somebody who had had it a few years earlier. I decided to go for itThere was a lot of pre transplant tests and visits to University college London and by the
I too had a high parraprotein level at diagnosis . It was 67 and after 6 months of treatment went down to 8. I was stage 3 with kidney problems and spinal fractures which required an operation to remove a tumour. I could not decide whether to go for the transplant, but after much research and and talking to someone that had had a transplant a few years earlier, I decided to go for it. Everyone’s experience is different and I found it very gruelling with instant sickness and diarrohea the moment my cells went back in, I also ended up in intensive care for 5 days because of a severe infection but having gone through all that I am so pleased I went for it. I was in kings hospital London for a month , slightly longer than the norm but as soon as I was home my recovery was very quick. After a couple of months I was in complete remission and have been since the transplant (3 years 3months) I am completely drug free and only have to have an infusion monthly for my bones. I have been able to live as near normal a life as you can and have enjoyed many foreign holidays since. I would just say that it has to be your decision, and if you make the decision to go for it, it has to be 100% as I believe a positive attitude is as good as any drug. I know some people are not fortunate to have a long remission so it really is a hard decision to make. Whatever you decide I wish you the very best of luck. I was 58 at diagnosis. Kind regards Liz Cornelius
to transplant in Feb. 2012 my paraprotein was down to 4. I found the transplant particularly gruelling with instant sickness and diarrohea the moment my cells were put back in. I also ended up in intensive care because of a severe infection but having said all that I am so pleased I went ahead with it. I recovered very quickly once I was out of hospital, I was in for a month, slightly longer than is the norm, but once I was out the recovery was good and I was in complete remission in a couple of months and have remained so since (3 years 3 months so far)
Completely drug free apart from a monthly bone infusion to strenghten my bones. It is a very hard decision to make and everyone has a different experience but I would say if you make the decision to go for it then it has to be a 100% as I think a positive attitude can work just as well as any drug. ( Incidentally before I made my decision my consultant said the average remission was 18 months with maybe a year to recover from the transplant but I found this not to be the case. If you decide to go for it I wish you the very best of luck
Hi Maureen
I don’t post on here very often,but always read posts and am so pleased to hear that Ian has at last got his date for SCT. I hope all goes well for him and he gets that longed for drug free remission. I had my stc just over 3 years ago and am still in drug free remisssion, after inital 6 months cdt. I had kidney failure at diagnosis and had to have spine stabalisation and still have 8 spine fractures but after a lot of indecision on my part as to whether I should have the sct I am so pleased I did as it has given me three years of very comfortable living. I do hope the same is true for Ian and the process is not too hard for him. One day at a time is the only way through it and hopefully he will soon be able to enjoy his remission. Good Luck with it all.
Hi Heso42
In reply to your question re screw stabilistion, I had this performed on me approximately 3 years ago, just after diagnosis, as a tumour had eaten into the top of my spine making my head and neck becoming dangerously detached. So I had radiotherapy to shrink the tumour and then an operation to remove the remainder and then screws and plates put into my head, spine and neck to keep my head in a fixed position. The operation went well and for about two months after the op my whole neck and shoulder ached just a dull nagging ache which as time went on disappeared completely. I cannot move my head up and down or from side to side but it saved my life and stopped me from becoming paralysed so I am eternally grateful to the skill of the surgeon. I lead an almost normal life , unfortunately I can no longer drive and of course the difficulties of no head flexability but I have got used to it and I have had no pain and nothing go wrong since I had it. In my case it was the only solution. If you have to have it I wish you well and hope you have the positive result I had.
Liz
Signed !
Hi Ann
I recovered really quickly after the stc but unfortunately when I was diagnosed I had a tumour in my neck which had to be removed and my neck and spine stabalised with metal pins, so my head is now in a fixed position, can't move it either side or up and down which has left me disabled. I also have nine fratures in my spine but despite this I would say I live a very active life and there is not much I cant do,apart from drive of couse. So don't worry about the time frame given, just go for it and stay positive Everybody seems to react differently to the treatments but I do believe positive thinking helps and I hope after you have recovered it won't be too long before you are back at work and enjoying life to the full.
Good Luck
Liz
Hi
I was given exactly the same time frame 12-18 months before the myeloma was likely to return after sct. I too was very shocked and did consider not actually having the sct because it seemed a lot to go through as well as the recovery time and then to have only 12 -18 months. However I did go for it and had it in Feb 2012. It did not take me very long at all to fully recover although I know everyone is different. I achieved complete remission a few months later and have been drug free since. 20 months and counting.
Good luck and hope you achieve a positive outcome, it is worth it just to be drug free.
Regards
Liz
Hello
I am so sorry to hear your husband is suffering so badly and it must be so difficult to try to keep everything together as well as supporting your husband. It is so cruel when you also have a young family. I felt I had to reply to try and offer you some comfort and hope for the future.
I was diagnosed in May 2011 with kidney faiure and a tumour in my neck and 9 broken vertebrae. It was all a total shock, I was told I had just pulled a muscle in my neck initially. My para proteins were 67 at diagnosis. After intensive drug treatment, radiotherapy on the tumour and an operation to remove as much as possible and stabalise my neck, head and spine with metal rods, I then had six courses of cdt and a stem cell transplant in February 2012. I thought my world had come to an end, but with the support of my family and positive thinking throughout I can henestly say I am enjoying all life has to offer, I am drug free and have been since April 2012. I am in complete remission and pain free. Yes there are things I can't do, such as lift my grandchildren for a cuddle , or turn my head either way, but life is so precious you have to try and remain strong. I thought I would never be able to do any thing physical ever again but your strength does return. I have had holidays, just hosted a large family dinner, doing all the cooking myself and enjoyed every moment. There is light at the end of the tunnel, although everything must seem so black at the moment. I know it must be so hard for you with such young children. The treatment available is getting better every month . I hope you can take comfort from the fact that I have come through it all at I assume a much older age so please try to remain positive as I realy do think that helps everyone. My husband did struggle with the diagnosis and had counselling which he said helped, perhaps that is a route worth investigating. Macmillan nurses can help with that. Even though it must be difficult but just an hour or so away from all the illness and time to your self would give you a little boost. I will be thinking of you and hope you have the positive result that I have had.
Take care
Liz
Hi Christine
So sorry to hear of your diagnosis and when it comes out of the blue it is such a shock. I too was just about to wind down and retire,I was diagnosed at 58. It had affected my kidneys and they failed which was how I was diagnosed. I also had to have a tumour removed from my neck and now have metal plates in my spice with 9 fractured vertebra but after 6 treatments of cdt I had my stem cell 18 months ago and I am still in remission and drug free and enjoying life. The decision was hard to make but I decided to go for it , it was hard going as I ended up in intensive care,but definitely worth it. To be drug free and be able to enjoy life again makes it worth while.You have obviously had a good response already with treatment so the stem cell will be a very good back up to keep it going.Good luck with everything and just remember although sometimes things may seem bleak you will feel better and enjoy life again especially when you are drug free.
Best wishes
LizC
Hi
Sorry to hear about your Mum, like your Mum I was diagnosed out of the blue with renal failure and a tumour on my neck, which if left any longer would have left me paralysed. So I had an emergency operation to stabalize my neck, head and spine with metal plates, which means my head is in a fixed postion, can't move it from side to side or up and down. I had radiotherapy and then went on to cdt for 6 months. My pp at diagnosis was 67 and just before stem cell transplant was down to 3. I had my transplant in Februaary last year . Didn't quite go accordng to plan, ended up in intensive care for 5 days but I am now in complete remission and enjoying life despite my disabilites. I feel so lucky to be able to enjoy life, I am not on any medicaton now, which is great. I was 58 when I was diagnosed and I have just celebrated my 60th, so there is light at the end of the tunnel. Please pass on my good wishes to your Mum and tell her to stay strong. She will come through it and enjoy things again.
Liz
I am now a year post my sct and in that time I have had 4 haircuts because my hair came through very tight and curly and very course and dull. It is now just a bit wavey but still very course and dull. It is also darker in colour. On my hairdressers advice I purchased some morrocan oil to try to soften the texture and add a bit of shine. It does help, but sill prefer my old hair.
