Stem Cell transplant Advice

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Hi,

I was diagnosed with myeloma in December 2020. I’ve been on Daratumumab, Velcade and Carfilmozib and am now due to have a stem cell transplant.

The harvest is scheduled for 22nd June with the transplant to follow 4-6 weeks later.

I’d really appreciate any advice on coping with the transplant and also advice for my wife and kids as at the moment we all feel as though we are heading into it without really understanding what the implications are.

  • Hi again Adrian  and well done navigating across to this corner of the community.

    The majority of people looking into the SCT process are given the impression that the process is very demanding and that you are going to be very ill, but you will find that most people will say that it’s not as bad as they thought it would be.

    I had 2 Allo SCTs so I experienced both ends of the experience spectrum (you can see my story through the link near the bottom) but safe to say I would not be here now if it had not been for SCT. 

    These following two links: Checklist for SCT Unit and Top tips for stem cell transplants contain peoples trips for going through SCT although one is taken form a lymphoma site the information is transferable.

    You will see from my story that we had to basically move from Inverness down to Glasgow for both my SCTs so my wife was away from family and friends for most of the time. Although she could have been at home at times as I was on very high levels of antihistamines due to my allergies so slept a lot. 

    I was in the SCT unit for about 28 days for both my SCTs and that was with me being rather ill during my second SCT.

    Actually the post SCT part can be harder than the actual process and this rambling link unpacks a little about this Life after a SCT - A Survivor's Guide

    You will see from my profile that I am left with some post SCT ‘left over’ health issues but looking at the bigger picture I can take this as a result.m

    Always around to chat.

    Mike

    The next part is a copy and paste (Sorry)

    This us my Simple Guide to an Auto (Autologous) Stem Cell Transplant.

    For an Auto SCT the patient will have to be in a window of remission so that their Stem Cells can be harvested this often requires what is often called salvage treatment.... basically some chemo that can often be strong but is designed to achieve the goal.

    The patient will most likely have a week of injections to make the bone marrow work overtime to produce lots of Stem Cells.

    To harvest the Stem Cells a line is put into the arm. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job by the bonemarrow so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.

    The machine can pick out millions of stem cells over a 4-5 hours process. The harvest is on the whole painless and once harvested the Stem Cells are frozen.

    Leading up to the actual SCT the patient will have to have treatments to get to a stage where the SCT can proceed.

    So 7ish days leading up to the SCT day he/she will have to go through what is called Conditioning, its a method of taking down the bodies Immune System completely.

    This is normally done again using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.

    Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion through a Central Line.

    The Stem Cells then go to the Job Centre in the Bonemarrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells and the all ’New You’ starts to grow as the body starts to reboot the Immune System and over time the blood counts come back up.

    Its all very cleaver, very science fiction but all very do-able.

    Each SCT Unit will do their own thing but for an Auto SCT the conditioning can be done as an out-patient then when the patient is get close to get their cells back this is done in a dedicated SCT unit.

    Its a very clean environment (Ward) in a hospital, the patient may even get their own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but the medical team will keep the patient well informed.

    Remember the patient does not have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until new immune system kicks back in. The patient will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow. The average is about 4-6 weeks in the unit but can be quicker.

    Once the patient gets discharged they do need to be very carful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments but their team will give lots of guidelines.

    Expect weekly appointments for bloods etc as they will want to keep a close eye on the patient.

    I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me, going off food and some mouth issues do come along but these SCT teams will help as they have seen it all before.

    You will have lots of questions so you will find me and others able to help out with anything SCT related.

    Once you know the name of the Conditioning come back as we can help with that one as well.

    I always say that you can’t do anything to control the actual medical treatments but you can make a difference to how you get through your journey, but we can help you get though this.

    Understanding stem cell transplants using your own cells (autologous) - PDF here.

    There are many types of conditioning but look out for a drug called Melphalan being part of the treatment

    I received the M the day before I got my donor cells. So 30mins before the start of the M infusion they gave me some Paracetamol 'why the Paracetamol?' I asked 'You will find out' and also put a freezer bag full of Ice lollies on my table...... so I chain sucked these ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins.

    I lost count but must have had 30.......... and the mother of all freeze brains every...... hence the Paracetamol.

    Over the years I have talk with people who’s SCT units don't give ice lollies!!!!! so if this is you just go out and get them and the ward staff will put them in the freezer until you need them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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