Tagged: Post sct therapy
This topic contains 15 replies, has 11 voices, and was last updated by 
Hi,
Is there anyone out there who has undergone a stem cell transparent? If so I would be grateful if you would share your experience.
I was diagnosed with multiple myeloma in Jan and have had 20 treatment of velacade & thalidomide. A further 4 treatments are planned. I understand that you have to be very strong to undergo a SCT so any comments are welcome. I have an appointment on 8th July with a doctor to be advised as to my suitability for a stem cell transplant.
Many thanks,
Steve Carter
Hi Steve, I my SCT last November in Southampton Hospital.
I don’t think you have to be “very strong” but you do have to be prepared for the possible unpleasant side effects of the treatment.
With out to much detail here it is a decision you will have to make after reading up on the treatment and whether it is for you.
I was in for 3 weeks. First few days ok then the chemo. Sickness and diarrhoea followed and feeling really bad then upward as time went on.
The nursing staff were brilliant and can give you “stuff” to help you especially with the sickness.
Yes it can be unpleasant but is doable. You haven’t said your age or whether you have backup with relatives etc. I had just retired and had my wife and relatives to see me through it. You will need to listen to your body as it may be very weak when you come home and rest when ever tired.
Some people I have read need to get back to work and possibly go back to early but these are decisions only you can make.
As I have said it is doable and not all those going through SCT suffer with all symptoms.
Hope this helps you
Regards
Graeme
Hello Steve
I have had 2 SCT. The first was in June 2007 in for 17 days and the second was January 2013 in for 18 days 18 days. I had CDT treatment prior to both of them. As with the CDT both my SCT had different side effects. I think when they say ‘very strong’ that refers to your body. On both occasions I had many tests to see if I was strong enough to have them. Both SCT were different in that the side effects of the second seemed worse than the first. I seem to remember that the first one did not seem too bad. Having said that they are hard at times and I think Graeme sums it up when he says they are ‘unpleasant but doable.’ One of my theories is that although I had been told what to expect of my first SCT the treatment was new to me whereas with my second I knew what to expect physically and mentally. With the CDT and SCT in 2007 I achieved 5 years full remission. I am still in full remission after the SCT in 2013 and have a blood test and see my consultant every 6 months.
Best wishes
Regards
Kevin
Graeme,
Many thanks for your positive response. I am 66 yrs old, so we sound a similar age? I am still working but next March is my retirement, if not earlier in the circumstances. I have a good support network in my wife family and friends.
Appreciating we are all different in how we will respond, it is nevertheless helpful to hear of your experience, though the final decision has to be mine. A few & final questions then, if you can bear with me.
How was your health prior to diagnosis?
From what I have read it can take up to 6 months to fully recover?
How are you now managing day to day?
Would you say your energy levels are back to what they were before your diagnosis?
What treatment if any are you now undergoing?
Did you need lots of injections measles, chicken pox etc. post treatment to restore your immune system?
Many thanks,
Steve
Hi Steve,
My general health was good. This was discovered when I went to GP about left hip problem and saw the Orthopeadic consultant.
Full recovery was about 3 months
I manage day to day with some limitations.
Endrgy levels for me can be low with need to rest when body tells me to. I have learned not to be “macho” and accept the limitations. This is when family and friends can help.
I have not had all the injections as just as I got the letter my Myeloma came back with a vengeance.
I got 10 months remission from the first round of chemo and SCT.
Then I had a second round of chemo and got 2 weeks remission but did not know it !!!
I am now 3rd stage and 3rd round of chemo 4th week in.
Apart from tiredness and a few minor things you wouldn’t know there was anything wrong with me.
I do call on my son and son in law for help with heavy items but we carry on with life as before. The main curtailment is travel which we did a lot of prior to this and decent insurance can be prohibitive especially where we used go so will have to start looking to Europe which is easier to get back from.
As can be seen others get long remmision times and I decided to go for SCT in the hope that mine would be that as well. I have turned down a 2nd SCT as it was not thought it would help.
I am glad that I did my SCT as I would have thought “what if” if I hadn’t done it.
Others I hope will give you their experiences for you to make the right decision.
All the best
Graeme
hello love. im like most people on this site si x months chemo. then sct in the freeman seventeen days. awful in some ways but well worth it. imnow. nearly. two year remmision a d. so happyto be here and still doing ok. ye. i. had to retire work and i miss it ii was a court usher for many years but. i. coud t be on my feet all day. i have. rhumertoid arthritis
as well s difficult diagnoses i feel ok at mminute. but live every day at a time have holiday whenever we can always. vet. good. insurance. live. for. the. moments life. is. duffrent. but. you. will. adapt look at people like andys. profiles very uplifting take. xarw but. remember cup half. full. better than half empty xx ann quinn
Hello, I’m Mark
i don’t want to put a damper on things but I had my STC in Feb ’15 and was in remission until May this year, so 14 months. I am now on second round of chemo and go to see transplant consultant in July to decide how to proceed.
I was gutted when it came back so soon as I had it in my head that the STC would give me 5 years remission but now I find that 18 months is the average, so I guess I’m average.
The descriptions above are correct and the Specialist Nurses know their stuff. I was in for 4 weeks and went back on a phased return to work in the May.
One thing I would say is don’t worry about forcing yourself to eat as your body will tell you when it’s ready, I found myself dreading meal times. Small and often if you can.
You will learn a lot about yourself when you go through it and you will find you are stronger than you think.
Best wishes
Mark
I had my SCT June 2007 aged 42 and still in remission. I had a really bad case of mucositis from the Melphalan requiring a Morphine drip so from day one oral hygiene would be high on my list of recommendations. The anti sickness tablets were wonderful, I was not sick once. Low red cell count after treatment caused tiredness and shortness of breath so movement was impaired. Eating was a chore due to lack of appetite and the portions were minuscule, taste was affected too. Clinical depression was a problem as the return to fitness was slow with so many new experiences to overcome and deal with. Keep telling yourself things will day by day improve as they do even though it does not feel like it at the time. My NHS treatment and staff were and still are exemplary.
Best wishes, Mike.
Had my SCT in Jan’14. Prepare yourself mentally, it is not easy and you will feel low especially if you have the nausea and diarrhea but in the grand scheme of things it won’t last long. Do everything the nurses tell you. I was told to change my toothbrush every week to reduce the risk of infection. I had to change my own bedding everyday, the nurses were not going to do it for me. I had an exercise bike in the room which I used and a lung exerciser. These are important. Don’t think the SCT will be an automatic cure, for me and others it was a failure, but it does not mean there aren’t other options. I suppose the other thing is to use the time to reassess your life because it will never be the same again. Not much else to say really, everyone is different and will react differently, good luck with it.
Hi,
I am very grateful to all who took the time to reply. My thanks to Graeme, Mark, Wallace Richard & Annlyn and I think I have forgotten one more name?
While your experiences have been varied it has been very helpful and encouraging.
Its the first time I’ve used a forum and won’t be the last.
I’ll be speaking to the medical team on Tuesday then in early July be assessed for a SCT.
Thanks again and all the best to each one of you.
Steve
Hi Steve……I had a SCT almost exactly two years ago at the Christie, Manchester when I was 64, in other respects, reasonably healthy and, so far (touch wood), I’m still in remission.
Everyone advised me I could feel pretty unwell and I was braced for something much worse than actually happened. I was out after 14 days. I had some nausea during the reintroduction of my stem cells, I certainly lost my appetite but otherwise I was OK. When I got home, I was fine, apart from tiredness, which gradually wore off. My quality of life has just got better and better (again, touch wood!!).
I know I may have been lucky but perhaps it shows it’s not inevitably a bad experience.
Good Luck 🙂
Hi Steve
I had my stem cell transplant in September 2014. Like Richard, mine didn’t work, my pp was higher afterwards and kept on rising until I was put on Lenalidomide (Revlimid).
I posted a long description of my experience when it was still fresh in my memory. I’m not sure if you can create a link to a single post on here, but this this should get you near to it:
(EDIT: Maybe not, it worked when I used the link in a browser but the forum has converted it into what you see below. It’s the 15th post in the thread.)
Despite the transplant not working in my case, if I hadn’t done it I would have always wondered whether i should have.
Good luck, Ian
Please would you all reply to me.
My relative is 3 months post sct and has not been offered any maintenance drugs. In your experience is this normal?
We think the consultant is giving a break, test blood again then prescribe. Is this you experience please?
Hello Pippy
After my first treatment (CTD) finished in 2007 I had read on this forum that some people had been given maintenance treatment. I asked my consultant about this and he said he doesn’t generally do this but if I wanted to have this he would put me on some. I cant remember what I was offered. I decided not to. After my first relapse I had the same treatment again and also did not have any maintenance treatment after this. For my 2nd relapse I was treated with carfilzomib over about a 6 month period. I then had a smaller dose over 16 months which I assume could have been classed as maintenance. I finished that in Nov 2019 and am now only on a 3 monthly infusion of zometa. Each of my main torments gave me full remission. I had a SCT after my initial treatment and first relapse but not after my 2nd relapse.
Best wishes
Kevin
Hi Pippy,
Myeloma seems to vary so much between individuals, perhaps more than with other types of cancer, which is what makes it so confusing, I think. My personal experience is not to have had any maintenance treatment following transplants, as follows:
I have had two SCTs (2012 and 2020). The only treatment I have had in between is Zoledronic Acid/Zometa infusions, usually once a month. These are currently on hold because of the pandemic situation.
My consultant said he thought this would be best for me as he explained sometimes if you stay off maintenance treatment then you respond better to the next line of treatment when you relapse. As I was only 50 at the time of diagnosis, I think he was planning for the longterm, as much as is possible. I was and am happy with this as I really enjoy the quality of life of drug-free remission.
My response to DVD treatment last year was in fact better than my response to the initial CDT treatment in 2012. I have also achieved ‘Stringent Complete Remission’ from this transplant instead of ‘Very Good Partial Remission’ just after the first one. This was sixth moths ago – I have just had my post SCT vaccinations today!
So the experience of your relative sounds ‘normal’ to me however everyone seems to have such different experiences. I hope they will continue to make good progress.
All the best,
Rachel
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