[reedhammanParticipant]

I started treatment six months ago with velcade and dexamethazone, my paraprotein level has gone down from 60 to about 10. It is plateauing at 10. Partial remission.

The doctor suggests I go for a stem cell transplant.

It is not an easy option because it means intensive treatment then some months to recover. I am not looking forward to it. The alternative is to wait and see and hope the myeloma stays quiet for a while. I need to decide by May 6th.

John

[LizcParticipant]

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

[LizcParticipant]

appologies for repetition in post it seemed to keep diasappearing as I was typing

[dickbParticipant]

You have nothing to lose, If it works you won’t regret it, if it doesn’t you should still get some remission but then will probably have to have it at a later date. Trouble is they won’t allow you to have a SCT after a certain age or if you are not physically fit enough. The few weeks in hospital are a pain but will be a memory afterwards.

I have to admit that it didn’t really work for me because I ended up being classed as stable only with a IgG of 24 at best. However, I have just had 15 months drug free.

[reedhammanParticipant]

I am aged 66, older than is ideal but the doc thinks I am pretty fit. I still feel rather sickly from the velcade treatment that has just ended.

I don’t want to go on forever feeling sick.

Most people here seem to have had on balance a positive experience of a transplant. Anyway it is quite nice having nurses fussing and looking after me, bringing me cups of tea and stuff.

John

[avantrompParticipant]

Hallo John
I just want to give you a different perspective. I was diagnosed at the beginning of 2010 at age 66. I was told I was too old for a sct and was so overwhelmed by everything that I accepted this. In retrospect I could probably have made a good case for a sct and almost certainly would have succeeded in getting one since I was otherwise in good health. Now I suspect that the right choice was made. I took part in a study in which I received lenalidomide. After an initial dramatic drop of pp level at the beginning, the pp has continued to go down and now seems to have reached a plateau over the last few months of about .5gr/dl. I continue taking 7.5mg lenalidomide (Revlimid) 3 weeks on and 1 week off. Since my diagnosis I have lived normally with no pains. White and red blood cells are low because of the lenalidomide but that is not really a problem. It is tremendously difficult to decide what is best for yourself. Whatever you decide you have to live with it, no “what ifs”.
info: I live in the Netherlands and the study in which I am still enrolled is an international one – Hovon 85. Under the protocol I must be seen by the consultant every 4 weeks, with a blood test. No need to feel guilty about the costs to the health service because all are covered by the manufacturer and it is great to constantly have up-to-date blood results.
Annette

[andygParticipant]

Hi John,

I’ve never been in the position to have a SCT so I’m not sure if you’ll find my point of view valid.

I have wondered what I would do if I was offered a SCT as there seems to be a debate going on to whether it’s the gold standard for treating myeloma. It’s especially being discussed in America but the two camps are divided. Some say novel drugs are the way forward other adamant that SCT is still a valid treatment. Here in the UK it’s slightly different because we don’t have access to the same novel drugs as they have in America.

Where do I stand? Well if I was offered one, very unlikely, I think I’d fall into the “go for it camp” I agree with Richards reasoning if it works fantastic and you may get a long drugs free remission that could last for years. If it fails or only gives a short remission you will of had the hard time but even if you only get 18months out of it there will be new drugs available then and you won’t of used up any older drugs in that 18 months so you’ll be further on and hopefully had a bearable time.

Anyway it’s  your decision and I wish you luck whichever way you chose.

Every day is a gift.

Andy

[reedhammanParticipant]

Thanks for these comments. I will need to make a decision by next week.

John

[tonyfParticipant]

John, I hope that you reach the right decision for you. By way of spurring you on, I was 68 when I had my SCT.After about 6 weeks I was beginning to lead a normal life, 26 months down the line, and being completely drug free for that time, my pp’s are slowly increasing, currently about 6. I have recently had an MRI and a bone marrow biopsey, to check me out. Not sure if they will resume any treatment, I suspect a watch and wait.
But now at 70 I have been told that they could look at a second SCT up to the age of 75!
I dont regret the SCT it has given me all of that time, drug free and able to travel quite extensively, more importantly lead a near normal life.
What ever decision you reach I wish you the best.
Regards
Tony F

[rebeccaRParticipant]

Hi John, had my sct xmas 2013 and currently still in remission – had velcade and dex for 8 months and got a vgpr. I was very gungho abut choosing sct even tho kidney gfr was 28% and making it higher risk – however survived and was back to full fitness/normal life in 6 months. If you are unsure there are some things you should explore which may help. Velcade/dex whilst good at knocking it down is not known for its long remission – I stopped treatment in July and the consultant was getting tetchy that a hospital hadn’t taken me in October in case I needed to resume treatment. Again it is all individual I was quoted 6 – 9 months average but the helpline said they had known cases of 2 years from it. What is your cytogenic profile? if you have no abnormalities and are low risk it makes the odds of chancing it and not doing it a bit easier. I am high risk which is why they decided to do it – and novel drugs do not impact my particular profile. Regards SCT remission is again individual but the average is considered to be 18 months – again some will go years and for some SCT is refactory. SCT made my light chains within normal range but did not touch the Minimal residual disease of .3. Whilst America question its use as 1st stage treatment we should always be mindful that they have many more drugs at their disposal and seem to treat it as individually as they can. Here we have a standard set of treatments to go through – regardless of cytogenics and current knowledge of what is likely to work best – and our drugs are not finite. SCT is known to deepen a response and velcade is not known for a hugely lengthy response. Wait til relapse for SCT? my husband wanted me to do this as I was so well at the time but they advised next time round I may not be in as good a position healthwise; the MM will have developed resistance to previous drugs (and when they harvest they don’t sieve out the mm cells!); due to resistance of previous drugs you may not be as low in numbers as you are now which means the stem cell harvest is potentially not as good. QOL? if you aim to get back to normal following SCt you will -may have to work at it for a while but you’ll get there. It’s unpleasant but doable. I liken the whole experience to childbirth it’s not nice to go through but once you are through it it’s soon forgotten. Do not underestimate, however, how SCT affects you mentally – not as much at the time but lots of people find a real dip after a few months (personally think its like post traumatic stress once you have come through one hell of a difficult time – no matter how positive you felt going through it. SCT is a real drain of strength on the whole family and how it affects them long term is not be underestimated but…. I would do it all over again if I thought it would give a good drug free period. When velcade relapses you will no doubt go through the maintenance drugs until they stop working/can’t be tolerated. Good luck with your decision and remember “run your own race” and do make sure the decision is yours alone. (My husband totally opposed the SCt – mainly due to kidneys – but I knew I did not want to be on permanent drugs if there was a chance to lead an unrestricted/less tired life)
Rebecca

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