This topic contains 13 replies, has 12 voices, and was last updated by 
Vicki 11 years, 8 months ago.
I have to make a decision as to whether to have another Stem Cell Transplant(SCT) or have normal chemotherapy following my relapse, after over 9 years remission, from my first SCT. I seem to be receiving conflicting advice as to whether its a good idea to have a 2nd SCT or go on a normal chemotherapy regime. I would really appreciate any advice, especially from those who have had two SCTs, so that I feel that I can make the right decision.
I am about to have cells harvested, first SCT 17 th Jan
I went through CDT with little or no problems
Specialist said as I am in " good condition" SCT will add at least 18 months to my statistical survival
Not sure if this applies to a second SCT, are you likewise in " good condition"
Well worth asking
All the best
Peter
I am sorry that you haven?t had any replies from anyone who has experienced a second stem cell transplant. My name is Ellen and I am one of the Myeloma Information Specialists here at Myeloma UK.
I wonder if you have heard of our PEER programme. It is made up by ?PEER Members? ? patients, family members and carers ? who are willing to share and communicate with others who contact Myeloma UK and are seeking information, support and/or reassurance from someone who has been or is in a similar situation.
PEER Members offer support by talking about their experience, giving practical advice and giving reassurance by answering their questions and listening to their concerns. I know that a few of our PEER members have had two stem cells transplants and if you feel that this is something that would help then please do contact me by email to askthenurse@myeloma.org.uk or on the freephone Myeloma Infoline on 0800 980 3332.
Best wishes
Ellen
Hi
I have been through two SCTs and would recommend you going for the second one. As you may have realised, this disease is very individual, everyones experience is different.
My first SCT was in 2005 and I achieved a 'good partial' remission until 2009. Fortunately they were able to harvest sufficient cells to freeze enough for the second transplant in 2009 so I had no problem with trying to harvest a second batch.
The second SCT was a far more pleasant experience and I recovered very quickly afterwards and achieved a full remission which lasted until August this year.
I am now on Revlimid + Dex and a third SCT was never offered, I am not sure if a third has ever been an option but if it was, I would go for it.
I was told from the beginning that a second SCT was not likely to last as long as the first but as you achieved 9 years in remission first time round you stand a good chance of having several years if you go for a second.
This is only my opinion and it is what I would do if I were in your place. As I said earlier, everyone responds differently and it very much depends on what stage your MM is at now. It has to be your decision and one that you feel comfortable with.
I hope a few more 'second timers' reply with their experience so that you get as much advice as possible before you make your decision.
Best of luck with whatever you decide.
Nettie x
All I can do is wish you tremendous luck with whatever you decide. As Nettie said this is such an individual illness, and with that comes very individual decisions
My husband only got 16 months remission with his SCT and the second did not take. He regretted that he went for the second but said that hindsight is a wonderful science and we both agreed that he should go ahead with it or be left forever wondering "What if".
Stephen was 53 when he was diagnosed He had a very aggressive form of mm and died 10 weeks ago 4 years after diagnosis.
Please let us know how you get on. It is always so nice to hear of people that get long remissions and respond well to treatment. I hope and pray that the cure for mm is within sight for everybody.
Love and good luck from Gill x
I've had 2 transplants,first one lasted 2yrs4mths 2nd lasted only 7 mths. During my first harvest they got enough cells for 2 transplants so a second was an obvious choice. 9yrs is excellent remission and because of this even if you only get 1 third of that which seems the average for a 2nd sct it would equate to an extra 3yrs. My choice would be to go for it given your remission record,and let's be honest more time without drugs has to be a good thing.
Best wishes.
Keith.
Hello Chris,
My husband, Stephen had his second SCT on September 15th. His first one gave him 14 months remission and we were surprised that he was offered a second but he decided to go ahead on the basis that it might buy him some more time. He will have his 100 day bmb just before Christmas so we have no idea as to how effective this one has been, although he has had blood tests which show his pp levels are less than 2. He struggled to get enough stem cells and had to have three injections for plerixafor to mobilise his stem cells and managed to get 2.2 million. He had quite a rough time ending up with engraftment syndrome, kidney and liver problems during the transplant but still came home after 20 days, sooner than with his first. It seems to me that his blood cells counts have been slow to recover but it's hard to remember last time. He has had several units of whole blood, 6 ish plus platelets as well. His haemaglobin is on the way up and he feels much stronger. He has been speaking to his boss and he is going to do some work from home for three days next week. He commutes to London and does not yet feel ready to attempt that but he is getting bored at home and has not needed to sleep during the day for about three weeks now.
I dont know whether this has helped you, and it is unlikely that you will have a similar experience as this disease seems to affect everyone differently. However you had such a good remission first time around and you could well get another long remission, although the do say remission is less the second time around. Whatever you decide I wish you well with all your further treatment,
Best wishes,
Mari
Hello,
This is second hand but I wanted to pass on the positive experience of a nice guy who I've met many times in clinic. He was initially diagnosed aged 34, which is now 17 years ago. He had a first remission of 7 years, and then a second remission of 10 years! The doctors told him it would be shorter the second time (which, as people have said, is the norm). But in his case it was longer. I don't know all the details of his treatment – he had auto SCTs both times, I think he said he had interferon maintenance treatment for 5 years. And this time around he's having PAD (velcade, dex, doxyrubicin) and then planning an allo over Xmas apparently.
On the question of whether SCT or not – my understanding is that nowadays with the novel treatments e.g. velcade, they're no longer sure whether there is any additional value from SCT when you already have achieved a Complete Response. (If you've already whacked it as much as possible, what's the point in doing any more?) But then again this is a theory for which there is currently insufficient data. I'm on a study which is hoping to generate more data on this. I've had a CR from my induction chemo (also PAD) so I'm not doing an SCT, just 'watch and wait' – even though I'm only 33 so I'd be fit enough to do an SCT. Feels a bit odd in a way, as there aren't many people out there in a similar situation, but fingers crossed! But this is for people with myeloma the first time around, not sure whether doctors would say it's different after relapse. And actually, now I come to think about it they do phrase it more about 'deferring' the SCT: I've harvested stem cells so it would be an option later.
Anyway, I think it's fantastic (and very inspiring for the rest of us) that you had such a long remission! You defied the odds once, so SCT or no SCT I bet you've got a good chance of doing it again! Maybe you can do the chemo and make the SCT decision later?
Hope that's helpful. Good luck,
Helen
Dear Everybody who kindly responded,
Thank you very much for replying to my query. Sorry it has taken so long for me to reply to you.
Well, after spending months seeing various consultants, having a bone biopsy and a PET scan, after reading all the information I received from yourself and others and much research on the internet, I decided to go for VCD (Velcade, Cyclophosphamide and Dexamethsone) treatment followed by a second SCT (Stem Cell Transplant), assuming everything goes to plan.
After all this time, it all happened very quickly as I saw my local consultant on Tuesday 11 December 2012 and was instructed to start the VCD treatment on Thursday 13 December 2012 on a three weekly cycle. All of a sudden it became urgent that I start chemotherapy immediately, bearing in mind that I had voiced my concern over the time that it was taking to start treatment and had been reassured that there was no rush and that I was OK.
At the moment I don't feel too bad, compared to my first regime of chemotherapy ten years ago, although I do suffer a whole day of hiccups the day after taking the chemotherapy drugs which completely wears me out. I've tried all the standard methods for getting rid of them but nothing seems to work and would welcome any suggestions/special remedies.
I'll provide an update towards the end of my current regime when I have an idea of how things are going.
Regards
Chris
Hi. Chris
Just read you. Post with great interest,my husband is not in your position concerning SCT second time round so unable to comment,just storing info for future ,as we all know MM will find you.
I can say I think Velcade is a not as harsh as CTD,but y ou do spend more time at the hospital ,I would like to see Velcade given as a maintenance drug,but it is only on trials for second line treatment,I think if I am right,if the drug does not reduce the myeloma by 50 percent the NHS does not have to pay for it !!!
So although the drug is effective its costly and again money raises its ugly head, buying time against cost,there is some figures out on the myeloma x1 trials,concerning people who have had it as a second line treatment after CTD failed,and its all good news.
So I can understand the experts view just Velcade or Velcade then SCT. Nice to hear from someone who has had 9 years.i hope trials will be considered for Velcade as a maintenance drug,we will have to keep our eyes turned to America,as we usually follow them. Regards Eve
Hi Chris
Good Luck in your new treatment I hope its fast and puts you and keeps you in remission for many a year 😀
Re the hiccups ? well My steward at our local drinking hostelry gets rid of everybody's and she has never failed.
get a glass of water (we do it with beer lol) fill your mouth DONT SWALLOW YET, put your fingers in your ears so you cant hear (Bev told us all this before we plugged our ears he he) when ears is plugged start to swallow the water SLOWLY unplug your ears when moth empty and walla No More Hiccups I hope. 😀
Tom "Onwards and Upwards" x let me and others know how you get on with that little trick 🙂
Hi there,
Just caught up with this post. We do hope all goes well for you and there are lots of positive stories on here…..that guy with the long remiss ions, wow 🙂
If you are able to go through with the second sct that will be great as it buys the time for the researchers to provide more far reaching treatments. They are building on the basic ones all the time. I hope the hiccups subside, my Colin really suffered with those, tried everything, holding breadth (not too long!), breathing into a paper bag, boo (the shock idea). They only worked to a small degree:-)
Best of luck
Vicki and colinx
Hi Nettie
I too am having to make the decision to go ahead with a second transplant – I was in remission for about 18months followin the first. Having read your very helpful personal experience I feel so much more confident in going ahead with my second procedure. I struggled greatly during and recovering from my first transplant which is probably why I am so hesitant and nervous but you have helped a lot.
Many thanks
Carol xxxx
Mari
As I explained to Nettie I am about to undergo my second transplant and your experiences and knowledge have encouraged me greatly to go ahead with a bit more confidence.
Many thanks and good luck to you both.
Carol xxx
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