[janmatthamsParticipant]

please can someone talk me through the stages of a Sct ,

[davidbrParticipant]

Hi Jan

This is what happened to me but it may not be medically correct but hope it helps. Do not be afraid it is all doable and at most it is unpleasant. You will be given all the help you need as all the SCT staff are the best in the world.

0. They install a Hickman line which is a tube in to a main artery by your neck.
1. You are given a high dose Chemo infusion to kill off your stem cell.
2. You have to inject yourself over a week with a stem cell stimulant to produce new stem cells.
3. Provided you have made enough new stem cells you have a stem cell harvest which involves being hooked up to a machine which takes blood from one arm syphons off the stem cells and returns it via the other. They need to collect 8,000,000 stem cells which took 2 days for me.
4. When a bed becomes available you go in for your SCT.
5. They give you a very high dose Chemo infusion to kill off all your stem cells. This will make you ill. You will loose your hair. You will loose you sense of taste and everything will taste of cardboard and you won’t want to eat anything. Take some sweets you like to suck as you will get a dry mouth. Sore throat is a problem so do all they tell you with the mouth washes. take lots of clean underwear you will need it.
6. After 24 hours they give you back 4,000,000 of your stem cells via infusion.
7. You have to stay isolated in one room for up to 4 weeks. Mine took 18 days before I was deemed fit enough to go home.
8. You will be week and frail for the next 6 months but take it easy and spoil yourself with anything you fancy and only do what you want to. Steer clear of young children as you will be prone to infection. I spent a week in hospital twice because of chest infections.

I am now 2 years 6 months post SCT and feeling great. I spoke to a man while in for my harvest and he had 7 years free from Myeloma and 10 years between SCT is possible now.

Don’t worry about it, it is all OK and at worst unpleasant. Take each step at a time and you will get through it.

Again this is all what happened to me from personal experience. It may not be medically correct so maybe someone else will fill in the details.

Best of luck and hope all goes well.

Best Regards David

• This reply was modified 8 years, 6 months ago by  davidbr.

[annlynnParticipant]

morning jan …My experience was similar to David s. i didnt have a hickman line if your veins are fairly good tgey dont always use one . A district nurse poped in for five days with injections to boost stem cells day five was the worste but when my husband rang to tell consultant how bad my pain was she replied with t h ats good tel ann to hang on in the worse the pain the better the harvest and i did get well above what was needed so ive got some frozen in the freeman in case of a repeat in the future !!! like david i was harvested then got a date and a bed was told to suck ice lollys or ice pops to help with the mouth infections you can get. it was a pain but it worked. i havent had a lolly since. two year in august for me . like d as vid said it is doable not the best experience youl ever have but remmision will be worth it hopefully. i was in hospital seventeen days but picked up well once i was home srem cell in august and tenerife feeling canny in december. give your self little goals to move toward itll keep you going best of luck with it all and feel free to ask what you want were a friendly bunch on here. xxx ann

[davidainsdaleParticipant]

Hi Jan

I am 2 years post transplant and doing well. There is lots of advice out there but I strongly recommend the info guide available from Myeloma UK, this was an invaluable source of information to me. There is also a great video clip about stem cell transplant on this website and there have been a couple of webinars about the topic which are available on Youtube.

That said, I found the single most helpful thing for me was going along to a Patient information day and speaking directly with another patient who had been through it all. There may also be a local support group nearby.

Good luck and I hope this helps.

David

[davidainsdaleParticipant]

Hi Jan

Forget to say that BBC1 on Wednesday 1 June at 9.00pm The Big C & me follows a lady in Wales who hopes a stem cell transplant will beat her disease.

Hope this helps.

David

[annlynnParticipant]

just read your post david i will definitely be watching that. thanks. ann

[janwParticipant]

Hi Jan

In addition to the useful information on this site, there’s also some interesting forum posts on The Myeloma Beacon website where individual myeloma patients have outlined their personal sct experiences.

Depending on your hospital’s policy on sct procedures, you might find some minor differences such as: * The high dose chemo of cyclophospamide not being used in the preparation for stem cell harvesting.
Some hospitals just use GCFS daily injections for approximately five days and if these don’t
produce sufficient baby stem cells, then daily plexifor injections are an option;
* To ensure your body is fit enough for the sct, you might be asked to undergo a variety of tests such
as lung function, Eco scan of heart, ecg, kidney function tests, PET scan;
* Either a Hickman line in the neck or PICC line in the arm is inserted to assist with administering
the daily drugs whilst you are in hospital, which saves being constantly injected. The line has to
be flushed on a weekly basis. There are some detailed You Tube videos online which show you what to
expect with the insertion of these lines;
* The time between the harvesting of your baby stem cells and being admitted onto the relevant
hospital ward for the sct appears to vary from a couple of weeks to two/three months depending on
bed availability, fitting in all of the relevant tests, pressure on the ward from emergency
admissions, length of sct waiting list, etc;
* Usually you receive the high dose chemo of Melphalan on your second day of hospital admission,
followed by the return of your baby stem cells on the third day. Some hospitals leave one or two
days inbetween the Melphalan and return of your stem cells;
* If your hospital has air filtering across all of the ward, then you might initially be allocated a
bed on a shared ward, before you are moved into a single room if and when necessary;
* The length of stay in hospital depends on how quickly your bloods recover, whether you are still
suffering some side effects such as nausea or raised temperature. The average stay appears to be
around 14 to 17 days. After your hospital admission, this is followed up by regular check up visits
to clinic to monitor your bloods and recovery. The 100 day check up after your sct identifies your
myeloma levels to determine whether the transplant has been successful. However, some patients do
experience further reductions in their myeloma levels after this 100 day period;

I hope this helps to provide you with some further information. Everyone’s sct experience tends to differ depending on the level of side effects which you suffer from the high dose chemo and how you handle the emotional aspects of the procedure, particularly the isolation in hospital as well as the months of recovery afterwards.

Jan

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