[amandaParticipant]

Hi Everyone  .  Just wondered if anyone can give me an account of what to expect in the lead up to the Stem Cell Transplant and the effects whilst undergoing the procedure.  I am under the impression that it is going to be an awful ordeal. I am really rather well at the moment and my concern is that I am going to make myself worse from now on and will never be the same again.  If anyone can help with giving me the benefit of letting me know as  the not knowing what is in store is more worrying to me than the actual procedure itself.  Thanking you all, good luck .

[tonyfParticipant]

Hi Amanda, I am sure you will get quite a few responses to your request. Let me tell you how my SCT went. Prior to harvesting I was given four injections, one a day, to boost the blood cells, the evening before harvest I was given a final injection, very expensive, evidently. Was hooked up to the unit, and off we go, I spent two days having the cells collected, four hours a day. The worst part was having to lay there doing nothing but watching daytime TV. Absolutely NO pain. I was admitted one week later for the transplant. My son in law shaved my head prior to admission, I was warned that my hair would fall out. The specialist gave me the worst possible scenario as to what could happen to my body during the SCT, everything from stomach upsets, weight loss,ulcers in the mouth etc all very worrying, but you know all I had was severe stomach upsets which lasted for two days. In Leicester there is an isolation ward with 5/6 individual units, all ensuite etc etc. Day 1, a Hickman Line was put into my chest, again painless. Day 2, was given a very large dose of chemo then on day 4 the stem cells were transplanted. Everything is done through the Hickman line, from taking blood samples, giving fluids, stem cells, chemo etc. I was off food for a few days, then could only eat very small portions, drank just about everything going, but really enjoyed full fat milk, cold from the fridge. I guess the worst part was the isolation, even the nurses left you alone, so get a Kindle, or lots of books there was a TV and radio in the room. I was in for three weeks, early on spent a lot of time sleeping, was quite weak, but improved rapidly.
I went home after three weeks, still feeling weak, disjointed and shaky, was advised to stay in the house, in semi isolation for a few weeks. I did go out for short walks and did what I could around the house, I slowly found my strength and within about six weeks I started taking the dog out on country walks and went from there!
I can understand you feeling apprehensive, try not to be concerned, it is a scary thought but the whole process is very doable.
I think Macmillan have booklets on SCT and I am sure that myeloma UK have similar.
Hope this helps.
Best of luck
Tony F.

[amandaParticipant]

Hi Tony

Thank you so much for taking the time to tell me how it was for you.  I feel reassured that I am doing the right thing , as you quite rightly pointed out the doctors tell you all the possible effects and it starts to sound unbelievably scary and almost unreal.  I am really pleased to hear that you have been there and done it and sounds as if it has been beneificial.  Have you got good results since the transplant .  I am pleased that there is life after , was beginning to think it was the beginning of the end.  I think that does sound over dramatic , especially from me, as I have been so positive about everything and not been phased at all , but the last consultation I had regarding the Stem Cell scared the pants of me. thank you once again, and god bless you . Amanda.

[tonyfParticipant]

I believe that you have to remain positive, if not for yourself, then for those around you. My paraprotiens were at 44 prior to SCT, three months after they were below 2, perhaps not what I wanted. I was/am on the myeloma XI trial, I opted for no maintenance drugs and two years later I am still on NO treatment, I visit the clinic every three months, at the last visit my pps had gone up to 4.9, the specialist was not concerned, so I guess all other blood levels etc were okay. There is treatment/drugs that will be available as and when the specialist sees fit, till then I get on with life. We still travel, been to Spain, Greece, San Fransisco, Hawaii, many places in the UK since SCT. I have had one nasty infection in two years, obviously we are mindful of infections and I am careful about what I eat, don’t kiss people with coughs and colds. I walk the dog for an hour or two across country every day and generally enjoy life.
So it’s not the beginning of the end!
Please stay positive.
Tony F

[amandaParticipant]

Hi Tony

Thank you for your account .  I will remain positive , I have up till now , especially for the family as I don’t want any of them upset. Today I had a wobbly moment but your story has put me back on the map .

It was great to hear that you are still having a good life and enjoying yourself , and feeling well with it.  Wow well done.  Good luck in the future.

Onwards and Upwards, thank you once again.  I feel like a weight has been lifted.

take care,

regards

Amanda.

 

[janwParticipant]

Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the stem cell harvest, the high dose chemotherapy and then the return of the stem cells. I cried myself to sleep on many nights mainly for fear of the unknown and whether the procedure would be successful. Therefore, I can fully understand how anxious and concerned you must feel about these next steps in your treatment. As Tony has mentioned, you need to stay positive. Try to focus on the reason for undergoing a SCT which is to try to achieve a long term remission. This website offers a wealth of information about what to expect prior, during and after the transplant. Some patients appear to sail through the process without many side effects, where as others suffer from a range of symptoms including nausea, fatigue, mouth sores, etc.

Personally, I found the four cycles of CTD exhausting, with constant fatigue and nausea. The stem cell transplant was painless, but left me feeling extremely fatigued. I slept through most of my time in hospital, couldn’t eat for ten days and generally felt poorly. After 16 days in hospital, I came home and slowly recovered over six months. But I still sleep 12 hours a day, take morphine medication for my aching bones and get tired quite easily. On the positive side, I have managed to achieve over four years of remission, which would not have been possible without a SCT.

Hope all goes well.

Regards
Jan

[keithmtParticipant]

Hi Amanda,

You’ll know by now that everyone’s experiences vary from one to another and I’ll be no different so here goes my story.

I was diagnosed in Aug 2013 when I was 62 and my paraproteins were at 57. After 6 months of CDT they went down to 2 and I was ready for SCT. I read up about the process which scared the hell out of me but as things turned out, the description was far worse than reality.

The stem cell collection and transplant was a breeze (although I got my wife to do my 4 daily injections …… I didn’t feel a thing). In fact, my collection only lasted a day (was warned it might take 2) and they managed to get enough to put some in the freezer in case I need another in future. I had a surreal experience after my cells went back in and was high as a kite for 3 days, feeling as fit as a teenager.

The big side effects come from the high dose therapy (in my case Melphalan) which destroys your cancer cells but also kills you immune system and can effect your entire digestive system.

After this euphoric feeling from the transplant, the Melphalan kicked in 2 days later and I was feeling generally poorly which is when I checked in to the Royal Marsden. I had plenty of nurses coming in and out to check on me and I was allowed visitors (properly gowned up) so wasn’t in “total” isolation. I was initially told I might be in for 3 weeks for my immune system to recover enough to go home but I was out after just 6 days. The next month was the toughest part for me, I had no appetite and felt very weak and was pleased my wife was around to help me through that. But gradually things improved and you get back to normal, it was only my energy levels that were slow to recover.

I had my SCT on April 1st (ha ha) and in July was told the great news that I was in complete remission. My regular blood tests (the latest last week) continue to show undetectable paraproteins and I’m living life to the full.

So don’t worry about what’s ahead, as you go through your SCT just take one day at a time and let the nurses look after you. The Royal Marsden team were just superb and I couldn’t have asked for more TLC and I’m sure it’ll be the same wherever you are headed.

All the best Amanda. Keep positive and remember that if you do go through some tough days, you will come through it and enjoy and long remission.

Kind regards

Keith

• This reply was modified 9 years, 9 months ago by  keithmt.

[amandaParticipant]

Good morning Keith

Thank you very much for your account and story.  It made me laugh in a few places as I could imagine myself being high as a kite as I only have to have a sniff at a glass of wine and I am rolling about .   Having said that so far everything I have heard from people so far has been very different from the consultant telling the experiences I may get.  I am enlightened that the procedure will be hard but certainly not as severe as I have been warned it will be.  I do sound if I am wimp but actually I have been very strong and positive since finding out I had Myeloma last February.  I was rushed to hospital very ill to find on admission that I had Kidney Failure.  On investigating why, with a kidney biopsy, the myeloma was discovered as the cause.  So a big shock all round but I didn’t break down , and have soldiered on through .  So the Stem Cell after a course of velcade for the second time starting next week will be the next event.  I just needed to know what it was all about and if there were good results from this procedure.  As I know nobody who has Myeloma , or in fact when I was diagnosed I had never even heard of it either  in which case has made it very hard to get to grips with what is going to happen.  I have turned the corner of the page of the unknown and with your story and from Tony I really do feel ready for the battle ahead , and kind of looking forward to the prospect of being clear for a while from this awful condition.  Thank you so much, it really has meant a lot to put my mind back to the path of onwards and upwards.

Good luck to you in the future and I hope you remain in remission for many many years.

Good luck,

regards

Amanda.

[amandaParticipant]

Hi Jan

Thank you for your account .  Everything has become so much easier now that I can see the unknown .  It was quite daunting talking with the consultant as everything seemed so drastic, but I now can see that it possibly could be so very different to what could happen.  I am pleased to learn that you are in remission and so far with the accounts I have received everyone has been turned around and leading a good positive life.  That has really enlightened my heart and I am ready for the next stage.  good luck to you in the future, good health for years , god bless.

regards

Amanda

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