[nannygill29Participant]

I was diagnosed with early myeloma in June, I’ve had 4 rounds of DVTD and I’ve just started my work up to a transplant , Monday I have my first chemo then injections and if all goes well harvest on the 27th Dec , I’m just so nervous about the whole thing but mainly about the hospital part side effects etc has anyone got any advice it would be much appreciated, Thankyou

[12fern34Participant]

Hiya I was harvested in March this year,everything went extremely well,I just sat in a chair while they removed what they needed,it wasn’t painful nor uncomfortable.

I was admitted to hospital for my stem cell transplant on 12 th April,without any problems.
The hospital staff were amazing from start to finish.
I was discharged on 30 April and I haven’t looked back.

Just have confidence in the team as they are doing this procedure every day and they really know what they’re doing.

I really hope this has helped.

[mulberryParticipant]

Our doctors have to tell us everything that CAN go wrong during stem cell transplants, which can really raise our anxiety levels, but the reality for most patients is that while they do get a few side effects, they don’t get all of them. In fact one person in the support group I go to had no side effects at all except loosing her hair. She did not feel ill at all.
I think it must be a bit like childbirth, at the time we might say “never again”, but many of us repeat the process – because it gives us what we want, in this case a long period of stability.
My friend had felt very nauseous soon after the start of her transplant, and I assumed that this would be my experience. However apart from some diarrhoea I felt ok until day 9. On days 9-11 I was sick a few times and just wanted to sleep all the time. On day 12 I felt myself getting better hour by hour. Was it worth doing? For me, definitely. I had my stem cell transplant 4 years ago in February, 100 days later I was walking through gorges in Crete, forgetting all about myeloma, and I’m still “in remission” from it.

[richfsModerator]

Hi Gill,

Just to add my experience to the others here, from what my team had told me I was utterly petrified of the HDT/SCT process and thought I’d basically be in a semi-coma, in pain and out of things mentally.

In reality, whilst it wasn’t pleasant, I was just really tired, lost my appetite, had mild nausea for a for days (was sick once) and then the few days in the middle whilst my gut was sorting itself out, had some rather odd diarrhoea. The way I normally describe it to people is that I felt the same as I do if recovering from picking up a stomach bug whilst travelling, pretty ropey for a few days, but just needing to rest and get through it. For the first and last week, I was leaving the ward to walk around the hospital garden, and in the middle week was walking and ‘exercising’ around the isolation room as best I could. The tiredness / fatigue was the most noticeable side-effect.

The harvest was very straightforward for me, other than the fact that the GCSF injections caused me some spasming lower-back pain which I wasn’t expecting and was quite worrying, but it quickly passed with some liquid morphine and a few deep breaths. It is something to look out for and be prepared for, then it won’t concern you if it happens.

My STC was back in 2019, I am on a second course of treatment now and am holding the cells for a second SCT as a third line of treatment in the future, it feels like a safety net having the (current) ‘gold standard’ treatment available in the future.

The stay in hospital will have its tedium, do take simple things to do – a bluetooth speaker was my best friend, listening to podcasts, the radio, music, etc. I wasn’t really up to reading books. Regular phone calls with friends and family helped, and ginger nut biscuits were my best snack as they are easy to nibble and help with any nausea.

Do reach out to us for more advice about the stay in hospital as it approaches, and see it as your journey into a happier, healthier future.

Best wishes, and I hope you’re able to enjoy Christmas even with everything that’s going on.

Rich 👍

[tony642Moderator]

Hi there,

I had SCT almost 3 years ago. You have probably gathered by now that it is not the most pleasant of experiences, but the effects only last a couple of weeks. However, the beneficial effects of the treatment can potentially go on for years. 3 years later I do not have any signs of active cancer, so for me, it was very worthwhile doing, and I would have no hesitation in doing it again if I needed to.

This must be a very scary time for you, first to be told you have the disease, then to be told that the treatment for it is not very enjoyable. We have all been there so we know what you are going through. However, they have to tell you all of the things that ‘might’ happen during the various procedures, but the majority are unlikely to suffer from them. Please go into it with a positive attitude, remembering that although the disease is not curable, the treatments available are very good at helping you live a normal and fulfilling life.

We are here to support you in any way we can, please let us know how you get on.

sincere regards, Tony

[richfsModerator]

Hi Gill,

I hope that the stem cell harvest went smoothly for you on the 27th December. Do you have a date for the melphalan and the transplant itself?

How are you feeling? It’s normal to be scared and really anxious about the STC process, but it generally goes by much more easily than we fear, so try not to let it occupy all of your thoughts. The staff in hospital will look after you really well. Do make sure you have some visitors and people to phone you, you’ll be tired and it gives a real lift to hear friends’ voices.

All the best, and let us know how you get on,
Rich 👍

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