[hally24Participant]

I was diagnosed in December 2020 and have been on Daratumamab and Carfilmozib since then. I am currently in the midst of the first steps of a Stem Cell transplant, on growth factor injections, harvest this Thursday and Friday 22/23 June, with transplant scheduled for 24th July.

I’ve read much about the process and the potential downsides but I’d really welcome people’s experiences of having the transplant and how you coped and any advice much appreciated.

[12fern34Participant]

Hi I had a stem cell transplant a year gone April.I can only say everything went according to plan with minimal side effects being slight bowel infection,this was quickly put right with antibiotics.
I was warned by the staff to expect a strong taste of tomatoes as soon as the transplant started…..I haven’t eaten tin toms since ha ha.
Once you are discharged let your body tell you when to rest,some days I would feel very lethargic and would try to carry on with everyday things then I realised I had to rest which I did and slowly my days got back to normal.
Please take everyday as it comes,take care

[hally24Participant]

Hi,

Thanks it’s really good to hear and your advice about resting and taking every day as it comes is really helpful. I only started liking tomatoes when I was 50 so no great loss!

Thanks again

Hally24

[kh0305Moderator]

Hi hally24,

My dad had his SCT back in 2013 and the main side effects he experienced were some taste changes, gastro upsets and fatigue. The fatigue was the one that took the longest to get over and though he made sure to get up every morning, he did often have to go back to bed for naps and it took many months for him to walk at a normal speed etc. However, we have no regrets about going through the experience as he had 7 years in remission post SCT which after the first year were pretty close to normal living and even with his hair loss, it grew back with no greys so he was pretty pleased!! Make sure to follow the advice about sucking ice/lollies non stop during the melphalan treatment to avoid the sore mouth.throat issues. I fed dad them non stop despite his complaining and he suffered no issues at all which as great.
Hope everything goes well xx

[sandy123Participant]

Hi hally24,

I’ve had two stem cell transplants, so from that you can see I was willing to go back and have a second one. It is indeed very off-putting at the beginning when you are told all the things that can go wrong (they have to tell you) but the prize is the remission time that you can get, which is really worth having.

I found that the procedure had been fine-tuned between 2012 and 2020 e.g. they freeze the stem cells in smaller bags so fewer of the precious cells are lost when defrosting them. My hospital stay was only 14 days for the second transplant. I had a Picc line instead of a Hickman line, which was far easier to put in and remove, and I think this tends to be the preferred kind of line now.

Absolutely yes do follow kh0305’s advice about sucking the ice lollies non-stop during the melphalan treatment. I didn’t know about this the first time and had terrible mucositis whereas after trying the ice lolly trick I only had it very mildly and this made a huge difference to my recovery. I’ve also read that some people continue with ice lollies for a while after the infusion has finished.

The nurses on my ward in 2020 were great about making me Scandi-shakes with ice-ceam on top as they said it is important to keep up your protein intake even if you’re not feeling very hungry. These were nicer than Fortisips.

The good things about hair loss (compared with having a long course of multiple chemo treatments) is that almost as soon as your hair falls out it is getting ready to grow back. The first time round I wore a wig for a while but the second time I just wore headscarves which give plenty of air to the scalp. My hair was a bit more wavy than before but still isn’t grey.

During my time in hospital I did have sickness and upset stomach but almost as soon as I got home these problems disappeared and it was a question of building up strength again. If you ask for a physio to visit you during your stay, they may give you exercises with stretchy bands and an exercise wheel (you sit in a chair and pedal it) and I tried a bit of marching on the spot to music too just to try and build up a bit of strength.

I don’t know about tomatoes…I thought the smell was like sweetcorn… but there definitely was a funny smell!!

I hope this helps and wishing you all the best for 24th July.

[tony642Moderator]

Hi Hall24,

I had SCT over 3 and a half years ago. It is not a pleasant process, but I have been cancer free since then, so any short-term side effects have been worth enduring in the long run for me. The main problem for me was the mucositis caused by the Melphalan Chemo. I had a fridge in my room and kept Ice cream and smooth yogurts in there as they soothed my mouth and throat, and at least got something inside of me as I could not actually face eating anything, and they just slide down. I also took an Alexa with me so I could have my own music, and I also took a Firestick with me so I could watch films to pass the time.

A bit of advice I have heard of from several people is sucking ice cubes for 30 minutes before and after the Melphalan injection as apparently, this reduces the mucositis. I only heard about it after my SCT, so I cannot personally say it works, but if I had to have SCT again, I would try it as I can’t see it doing any harm.

Hope this helps, regards Tony

[mariposaParticipant]

I had a hospital appointment 66wks ago, paraproteins 9. A few weeks ago I had back pain but it wasn’t too bad. Since then I’ve had a lot of pain in my right hip and lower leg, a few twinges in my thigh. It’s much worse at night.
Has anyone else had this ?
I’m still waiting to see if I’ve got Parkinson’s..it might be that.
Thanks

[mulberryParticipant]

Hi Mariposa
If I remember correctly, you have a diagnosis of MGUS as well as being on the cusp of Parkinson’s?
The benefit of being diagnosed with MGUS is,or should be, being tested when suspicious pain occurs. If you are unlucky enough to progress to myeloma, it should be caught early before significant damage has occurred. I would ask your GP (or a Specialist Myeloma Nurse) for tests to be done.
That pain may reflect myeloma damage is always a worry, but fortunately sometimes it proves to be for more straightforward reasons.
As a myeloma patient I have asked for, and been given, several scans over the last few years- after suspicious pain. Fortunately in neither case was it caused by myeloma raising its head again, but by trapped nerves- much easier to treat! Myeloma doesn’t usually come on so suddenly, but can do so, and I wouldn’t have dared to get physio type treatment without ruling out myeloma as the cause.
Do inform your medical team of your hip pain, don’t wait, and if GP is unhelpful (some are more knowledgeable about myeloma than others) contact the Haematology team for advice.

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