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Hi Im 50 and was diagnosed with MM last dec 22 had no previous symptoms. I am coming to end of 4 cycle DVD treatment which I’ve had no probs or issues with, a SCT expected early June. I’ve been told it will be a 3 week hospital stay, guaranteed hair lose and other side effects from the process, but major WeightLoss has been mentioned due to some of the other side effects can anyone tell me their experience in this process. I know everyone’s journey is different, but a heads up on others is helpful. Many 🙏 If you have any questions for me please ask as we are all on this journey.
Hi,
I had a SCT in December and spent 20 days in hospital.
The transplant itself is ok mine only took 20 mins for each bag. I had 2 bags of stem cells.
It is the chemo that will give you the hair loss and most of mine came out during my hospital stay but I had shaved thickest off beforehand.
I found I couldn’t eat and think I only managed 2 small tubs of ice cream in total.
The thought of food made me feel sick and the nurses even tried some milkshake type drinks to build my energy up.
I also suffered fatigue afterwards and was tired when I first came out.
By the end of January my energy was back and my appetite had mostly returned though I still can’t stomach bananas lol.
My hair is growing back nicely too.
The doctors have to tell you all the side effects possible and it sounds really scary but as you’ve said Myloma is an individual illness so you may get all or some or none.
Looking back it seemed horrendous to me but I soon got over it and quite well now apart from severe neuropathy in my feet and hands caused by previous treatment.
Hope all goes well for you and remember it will only be temporary.
Welcome to the forum stressed (good name for a MM patient)
It’s good that your myeloma treatments so far have been pretty benign, and the reality may be that you continue like this
All Myeloma patients are terrified of their first stem cell transplant because doctors are obliged to tell us all common side effects, and the less common ones too.
The reality seems to be that we all have at least one side effect- hair loss. But a few patients have no other side effect at all. (Eg a member of our local support group 18 months ago) and having gone through the expert, many MM patients are prepared later to go through it for a second time .
The melphalan we are given destroys all newly emerging stem cells in the body. Gradually over the first 5 days or so we loose the existing stem cells and can have side effects such as a sore mouth (mucositis) and diarrhoea. Making your mouth extremely cold by sucking on ice during the melphalan infusion (& a bit before & afterwards) can often avoid the mucositis and regular use of mouthwash also helps.
The trouble is that our doctors are obliged to inform us of all the common and less common side effects, which can and does scare patients, especially when warned that it can cause death- but if you ask your doctor when the last patient died during SCT, at your hospital or elsewhere, it is likely to be a long, long time ago . In reality patients are warned of this risk when undergoing all operations too, but we all know people who have safely come through operations, so we can put the risks in context. it is much harder for patients having SCT because we haven’t experienced people we know going through the procedure.
Although most patients do have some side effects, we do not get ALL of them, and most are relatively short lived.
Most patients can’t avoid a certain level of diarrhoea but it’s usually not debilitating.
Nausea is common but is well treated with antiemetics. Some patients pick up infections, but these are treated immediately.
I was very fearful of SCT myself, and had seen another patient who had been extremely nauseous, which I imagined I would be. However my experience was nowhere near as bad as I imagined. I did have diarrhoea but little nausea, no sore mouth, significant fatigue (so I slept alot) and I picked up an infection which wasn’t serious. In all I felt tired but ok for the first 5 days, and on day 12 I woke up knowing that I was over the worst.
It put me in Complete Response, where I’ve remained for the last 4 years. So was it worth it? For me it most certainly was.
Many patients are now able to have SCTs outside hospital ward stays, either from hostels/hotels or from home if they live locally. I honestly think I would have felt better if this had been an option for me 4 years ago when I had my SCT. Although patients can always be admitted if they are poorly, by no means all are, which may help put the risks of being ill into context.
I hope you find the experience straight forward, and more importantly still, effective!
Best wishes
Jane
Hi,
I had my SCT in February this year and was in hospital for 3 weeks which was better than anticipated as I was told it would probably be a month. I have to admit that for the first 5 days after the transplant I was feeling really well and thought I would sail through, but then the side effects did suddenly kick in. The worse thing for me was the awful lack of appetite and feeling of nausea. This lasted even when I came home for a further two weeks but I’m pleased to say that it did pass to my relief and I’m now eating normally again. Due to that I probably did lose some weight but it wasn’t enough to be concerned about. The doctors wanted me to drink the protein drinks and shakes but just the thought of them made me heave and there was never any pressure to have them. At one point I was surviving on Diet Coke and Haribo, both of which I never touch normally! The staff were brilliant at making me a slice of toast whenever I felt I could stomach it. I did have diarrhoea but it lasted less than 3 days. I never suffered with the sore mouth but did use the mouthwash I’d been given religiously. I’d already made the decision to shave my hair before it fell out so that wasn’t an issue for me. The fatigue was bad and I found it was worse when I came home, probably because home is more than just one room, unlike in hospital and it took it out of me just moving from bed to bathroom! Hopefully you won’t suffer too much and will think, just as I kept telling myself, all these side effects are only temporary. It may feel a rough ride but we all hope it’ll provide us with a stable future for the foreseeable so it’s worth it. Good luck.
Brewy 36
Hi,
My mum recently came out of hospital 17 days after undergoing a stem cell transplant. Before going in there, my mum had a really positive outlook on what was about to happen (I know easier said than done) but this treatment is potentially and hopefully going to protect your life for a very long time.
I know she suffered from nausea quite a lot and that is bound to happen, i recommend bringing in dry packaged foods, like crisps, biscuits (ginger is meant to be really good) and maybe a lemonade (mum struggled drinking water as it made her more nauseous). I think my mum suffered most of the ‘popular’ symptoms: nausea, diarrhoea, fatigue and the mucositis. But, can I just reassure you how brilliant the staff were to my mum, they were incredible and we were very lucky that we knew my mum was being cared for and in safe hands.
Fatigue and nausea are still hard for my mum now since leaving hospital, but I don’t think observations in the middle of the night helped my mum (this does happen, just to make sure you’re levels are ok etc). So I do recommend some earplugs of some sort as hospitals are quite noisy.
But I wish you all the best of luck for June. Trust me when I heard about my mum undergoing a SCT I was very nervous, but the staff are brilliant and the time really does fly by!! I hope its successful for you and I wish you all the very best for the future!!
Hi
My dad had his SCT back in 2013. He lost his hair but was very pleased when it grew back in as all his greys had gone!! Side effects wise, much like others above have mentioned, fatigue being the biggest one but some gastro problems. Otherwise nowhere near as bad as we were expecting from what we had been told! Hope it all goes smoothly in June for you xx
Hi. I’m 74 and was diagnosed with myeloma at the beginning of Sept 2022. After the usual blood samples and bone marrow biopsy to confirm it I started treatment in Oct 2022 with 4 28 day cycles of Daratumumab, Bortezomib, Dexamethasone and Thalidomide. I had quite a lot of side effects. The main reason for replying here is that I came home from my stem cell treatment 3 days ago so this is ‘hot off the press’. I had my stem cells harvested over 2 days about 2 weeks before the SCT. I also had a consultant appointment a few days beforehand to sign consent forms etc. I must admit I was apprehensive after that with all the stuff about 5% end up in intensive care and 1 in 300 don’t survive or whatever but I duly turned up at the hospital on 18th April. This was quite difficult for me because I live 100 miles from the hospital and had never spent a night in hospital in my life. I was given the melphalan that same afternoon and then received my stem cells in 10 bags over 2 days (20th/21st April) – it took about 20 minutes per bag. It seemed to go according to plan with my neutrophils heading towards zero over the next few days and then starting to recover on 2nd May. On 29th April I had an elevated temperature so I was immediately put on an intravenous antibiotic, meropenem. My temperature didn’t stay elevated for very long and I was taken off the antibiotics after 3 days. If I had an infection, I have no idea what it was. I was able to leave hospital on 6th May (18 nights in total). I felt nauseous on and off and had no appetite (the food didn’t help) and I had problems with constipation and then diarrhoea. I managed to cope reasonably well with the noisy interruptions of ‘obs’ in the middle of the night and alarms from infusion pumps but found ear plugs and a thick mask useful. My hair has fallen out (I didn’t have much). I thought I might have lost a bit of weight but in the event it was only 3 or 4 pounds. My appetite seemed to improve as my neutrophils climbed back to normal levels and I have eaten reasonably well since I got home. I think I must have been positively euphoric on getting out of hospital and felt OK for a day or two but am now feeling pretty tired even after a good night’s sleep. I can’t say I enjoyed the whole experience but it wasn’t as bad as I thought it could have been. Happy to answer any further questions if I can.
Hi, I’m 62, diagnosed with myeloma October 2022, I am due to go into hospital for my autologous stem cell transplant, just had a quick look on here & pleased to find posts saying it wasn’t as bad an experience as expected so thank you all, especially Lakedis I think the name was, I’m not very good at navigating these forums as you can probably tell!
Nuala
I hope it’s a straightforward process for you Nuala, and most importantly, gives you a good, long period of disease stability.
Best wishes
A really great thread, very informative so thank you all. I am pencilled in for SCT in Sep & meeting Consultant next week. Question to all on this Thread…with the benefit of hindsight, is there anything you would have discussed at this pre-SCT meeting that would have made the decision process and/or preparation for the SCT more comprehensive? Many thanks.
Hi this is Nuala, I had my SCT just over two weeks ago, I had a 15 night stay, overall I think I can say it wasn’t as bad as it might have been! I wouldn’t do it for fun though! I had 8 bags of my stem cells back, I had to have lots of IV fluids, a blip during the transplant when my heart rate rocketed but overall it was uneventful. Like others have said I felt well then bam – tiredness kicked in like I couldn’t believe, I just wanted to lay still & close my eyes! I’d sucked on ice chips as I was told to, I had mouth dryness & a painful throat for about 3 days but I was soft brushing & using mouthwash, no ulcers or anything like that. Eating became a bit of a nightmare, having to order for the next days meals I found really difficult because my taste buds were shot, I had very little appetite. I have lost a lot of weight but now I’m home I can eat just what I fancy! Diarrhoea has been a problem so I take Imodium now & then, no sickness at all which was one of my fears but that was very well managed with anti emetics. My hair fell out after about 5 days, I’d had it cut short then my husband shaved it when I got home. Mostly I would say I’m just so glad & relieved I’ve done it – just want to get over this fatigue. Good luck to anyone waiting for theirs.
Macklebae, I think my problem with my pretransplant meeting was that I had no means of judging the relative risks (of all the possible problems that I could encounter) that I was told about. Superficially it made me wonder why anyone, even with a life limiting illness, would put themselves through the experience.
It would be unethical for transplant consultants not to warn patients of everything that can go wrong/complicate the experience, but actually there is a wide variety of real life experience, from simply loosing hair (which is the only side effect one person I know had) to dying (which my transplant consultant couldn’t remember happening at the hospital).
In some ways types of questions about the experience of dealing with the side effects are probably best answered by other patients who’ve been through the experience, but the Dr should know the statistical risk of anything you are concerned about.
I think it’s helpful to go into the meeting knowing that the Dr needs to ensure that you understand that the procedure isn’t curative and what the side effects might be, ie it’s a medico legal requirement.
On top of this there will be quite a heavy schedule of tests, drugs, appointments which the transplant hospitals seem to organise very efficiently, but it’s worth checking out any aspect you’re concerned about and perhaps how ‘flexible’ the date of the transplant might prove to be. It may be easier for hospitals to stick to planned schedules now some MM patients have SCT as ambulatory patients either from hostels or home, but I found waiting for bed availability, day after day for 11 days, difficult as I hadn’t appreciated there could be any delay, let alone one that went on, and on, and on.
Nuala, glad to hear that you are home and I hope your recovery is straightforward. You are over the big hurdles now, I hope you get a long and healthy period when myeloma (& disease) can be put on the back burner.
Best wishes
Jane
Hi. I’ve found it really useful reading this thread. If all goes to plan I should be having my SCT in a couple of weeks.
I’ve a question of a much more mundane nature!! Are button up pyjamas better than nighties and similarly blouses better than overhead t- shirts for when I wear my own clothes? Just thinking about wires and lines and things. Sometimes it’s easier to fret the small stuff when the big stuff is scary
Thanks
Hi GC
Nothing wrong with asking a question however mundane! It all depends on whether you are having a Hickman or a Picc line. I was told Hickman at first so went out and bought button up pjs but then it was changed to a Picc line. So you definitely need short sleeves with that. I chose to sleep in a nightie (cooler), then wore smart, short sleeved PJs in the day. There was a few ocassions when I needed a bag of fluids overnight but I just asked if I could change into my nightie before they hooked me up.
Hope that helps.
Brewy.
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