[karl66Participant]

Hi,
I’ve just come to the end of 6 cycles of my Bortezomib, thalidomide and dexamethasone (VTD) chemotherapy and I’m waiting for an appointment for my SCT, and wanted to ask anyone who’ve had one, if they could share their experience.
I’ve read the Myeloma UK info booklet about the SCT, and know the process involved, but wondered what to expect with the side-effects during the hospital stay, and afterwards during the recovery period.
Would appreciate any info anyone can share, as I’m not sure what to expect and getting nervous about it.
Thank you
Kind regards
Karl

[kevinParticipant]

Hello Karl

I’ve had two SCT one in 2007 and the other in 2012. I was in hospital hospital for around 17 days each time. They were both different experiences regarding side effects etc but the main thing I remember about both was trying to occupy myself to pass the time. The second one seemed to be harder but I think that was because I roughly knew what to expect and it wasn’t a new experience. I didn’t suffer any dramatic side effects on either occasion. I am not sure now what they told me that I might expect but was told they should be able to help treat if any occurred. I think the main battle is trying to keep yourself occupied as I remember the time did seem to drag. On both occasions the staff and the care I received were exceptional. Any hobbies or pastimes you enjoy and can do from a hospital room are the way to go.
Best wishes
Kevin

[karl66Participant]

Hi Kevin
Thanks for your reply and the advice, much appreciated.
I’ll be sure to take some things with me to occupy the time, when the SCT happens
Best regards
Karl

[mulberryParticipant]

For the majority of us having an SCT, the fear of SCT is much worse than the reality. Medical teams have to inform us of all that can go wrong, but in reality most will not have most of the side effects, most will have a few and some manage to get away lightly.
It seems to be usual to have severe diarrhoea as the high dose melphalan destroys cells in the gastro intestinal tract, but although nausea and vomiting are common, they do not necessarily happen, nor does mucosis in the mouth (& this can be avoided by numbing the mouth with ice during the melphalan infusion).
Many people feel well, or ok, for the first 7/8 days after SCT as it takes about a week for the old immune system to be totally destroyed by the chemo. It is at this point when we are neutropenic and at our lowest point physiologically, and physically. Usually patients turn a corner on day 12. This may result in a slow, gradual rise in blood counts, or sometimes is quite marked.
I had a SCT in 2019 and it was physically much easier than i had expected. I felt fatigued but well, and could exercise, until day 9. I had diarrhoea, a touch of nausea but was only sick a couple of times. Between days 9&12 I was exhausted and slept most of the time, but my worst pain came from sciatica from being in bed. By the end of day 12 I realised I was feeling better and was positively elated when I woke on day 13, knowing I’d come out of the other side.
I was discharged the following day, but readmitted on my first follow up appointment as my temperature kept spiking. I did not feel really unwell at this stage though, and was able to read, watch films etc which frankly I had done very little of during my initial stay.
I had gone into SCT having had a VGPR. My blood test on day 38 showed no sign of paraproteins, a complete response.
What I hadn’t fully appreciated before SCT though was the possible impact of collateral damage of the bone marrow caused by the high dose chemo. In my case although my neutrophils rose above the danger zone pretty quickly, they have never recovered to pre SCT levels, and have affected my ability to tolerate maintenance lenalidomide (which extends remission times & overall survival post SCT).
Mind you, I’ve swapped active disease for a slightly dodgy bone marrow, and I would do it again in the same circumstances.

[karl66Participant]

Hi Jane

Thanks for sharing your experience of the SCT.
I know everyone’s experience can be different, but it’s helped calm my nervousness about my own upcoming SCT a lot.

Best regards
Karl

[Anonymous]

Hi Karl,

I’m so glad you asked this question because I am also approaching a SCT later this month and I’m feeling a bit apprehensive too. Like you, however, I found reading the post from Mulberry very calming.

My first SCT in 2013 was a bit complicated because I had continued working as a teacher throughout my CDT treatment and picked up a bug from a child just before going in, plus it was January and snowing! This time it’s the summer and I’m older and wiser, retired, and have been shielding, like all of us, for months now.

The tip about sucking ice cubes during the Melphalan infusion is one I definitely want to try as I did suffer from mucosis last time, so it would make a huge difference if this works.

Once through the transplant, my immunoglobulins recovered really well and I have throughly enjoyed drug-free remission from May 2013 until DVD treatment in January 2020. It was well worth it!!

Wishing you all the best with your transplant and to anyone else facing one too. I am so grateful that we have this wonderful opportunity on the NHS. Also, I agree with Kevin that the staff who cared for me in 2013 were superb and the atmosphere in the ‘ward’ (even though in isolation) was very upbeat and supportive.

Rachel

[marty2019Participant]

I’m in my mid-fifties and was diagnosed with multiple myeloma around April last year. I had my stem cell transplant at the end of January this year. I found the SCT itself to be a bit of an anti-climax. Fifteen minutes of my stem cells being reinfused through my pikk line then laying in bed waiting for things to happen. I only encountered a few minor problems while in hospital. First, I lost my stamina for a few days that made doing circuits around the ward increasingly strenuous. After a week, I began to recover my strength. Second, diarrhea caused me to lose weight. Even with a lack of stamina, its amazing how fast you can move when you need the toilet. 🙂 Part of the diet plan given to me in hospital was to eat lots crisps, chocolates and muffins and also have lots of fizzy drinks to regain my weight. That was a bonus. Third, low blood counts meant I needed two blood transfusions. That was also ok. I also got an infection from my pikk line. Medical staff got onto that quickly and pumped me full of anti-biotics. Overall, the SCT process was nowhere near as bad as I expected. In fact, I quite enjoyed it. I had my own room with tv and internet access. The medical staff made a big issue about preventing mouth ulcers. I developed a couple of small ones, but they did not cause me any discomfort. Guess I was lucky in that regard. The combination of medications given to me immediately before and after the SCT meant I stopped growing a beard for about three months. That was also a bonus as I hate shaving almost as much as having a beard. The only thing I had a major problem with was the stem cell harvesting process which occurred three months before my SCT. I produced almost triple the amount of stem cells needed. This caused me so much pain in my back and pelvis that I needed to be admitted to hospital. Of course each person is unique, so you will probably have a different experience. Try not to worry, the medical experts know what they are doing. Do as I did; treat the process as a holiday.

[karl66Participant]

Hi Rachel

Thanks for your reply, I’m glad this post has been of some help to you, and any others who may be going through the same…

Good luck with your SCT later this month and hope you get through it without any complications.

Best regards
Karl

[karl66Participant]

Hi marty2019

Many thanks for taking the time to share the info of your SCT.
Like you said, everyone has their own experience, but it’s been reassuring to me to see different people’s journeys through this, and gives me a much better idea of what may happen during my SCT, when the time comes.
I’ve got a great Myeloma team at the NHS hospital, and have been staying positive throughout this process.

Best regards
Karl

[marty2019Participant]

Hi Karl! I forgot to mention two of the strangest experiences I had going through the SCT process. First, when they harvested my stem cells, they gave me a drug (can’t remember the name of it) which gave me an extremely intense taste of garlic in my mouth. Really made my eyes water. Reduced in intensity quickly, but it took about two days to completely get rid of the taste. My body also reeked of garlic. Good for keeping vampires at bay 🙂 Second, I normally would crawl over broken glass for a good cup of coffee or a decent glass of orange juice. Almost immediately after having the infusion to kill off my bone marrow (forgot the name of the drug) two days before my SCT, my sense of taste changed dramatically. I could not stand the taste of either. As a result, I became dehydrated in hospital because I found the taste of all liquids absolutely repellant – except for fizzy drinks. All foods also tasted very bland. This lasted about a month. Before I forget, I was also advised by hospital staff to be extra vigilant with my oral hygiene.

[terrysParticipant]

Hi Karl,
I had my SCT last November. I had extremely good care and have made a good recovery. I have been reading everyone’s accounts with great interest. I was in hospital for just under 3 weeks and shared many of the experiences that folks have been describing. One thing that I found very beneficial to my well-being during my stay in hospital was to get out of bed every day, have a shower and change out of my PJs for the day. Even on the more challenging days when I might just sit in the chair by my bed, I followed this routine. I’m sure it helped me to remain positive.
I wish you all the best for your SCT.
Terry

[karl66Participant]

Hi Terry,
Thanks your post and for the helpful suggestion.
I’ll do definitely do that. I think the change of PJs to day clothes would make me feel less like a patient, and more like a normal person.
I’m a firm believer about trying to not let the cancer treatment be the main focus, and keeping a daily routine to stop it being on the mind all the time and taking over my everyday life/thoughts.
Best regards
Karl

[jkParticipant]

Hello all, my mum is about to have her SCT in a couple of weeks. I’m putting a care package together for her to take to hospital and wondered what you all found helpful to have with you or any little home comforts that she might appreciate? Thank you, Jess

[marty2019Participant]

Hi! I had my SCT in January this year. I found a number of things either helpful or unexpected. Boredom can be a major problem. Staff are usually too busy to stop by for long, so keeping yourself occupied is important. Luckily, I had my own room with a TV and internet access. If available, check to see if access to these are free or user-pays. My hospital also had a small shop, so visitors brought me newspapers or magazines each day. There are also lots of free digital English-language versions of newspapers from around the world on the internet. I took several crossword puzzle books in with me. Best to get large-print versions as my sight became somewhat blurred for a while. Maybe a pack of cards for your mother to play Solitaire on her own or other card games with you when you visit. Reading books is also a good idea. Best to get new ones (to avoid catching any infections) as the SCT process essentially destroys the immune system. Perhaps a small cheap portable radio would be a good idea. Several changes of sleepwear that you don’t mind disposing of would also be a good idea as I found diarrhoea to be a problem. Being hooked up to drips for much of the time meant that it was not always possible to get to the toilet on time. Staff placed a strong focus on oral hygiene as mouth ulcers can be a problem with an SCT. I was advised to get a soft tooth brush while in hospital and after discharge. However, the nurses thought even this grade of toothbrush was too course. Instead, they gave me a type of small cube-shaped sponge of a stick that resembled a lollypop to use several times a day. If you get any mouthwash make sure it DOES NOT contain any alcohol. Mouth ulcers are painful and alcohol only makes this worse. I hope this will be of some help.

[marty2019Participant]

Hi from Marty again! I forgot to add that it would be a good idea to include one or more head scarves. All my hair felt out suddenly only a couple of days after getting my transplant.

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