Hi All,
I'm mid cycle 4 on the Nordic protocol and am due ASRT on Cycle 6. So far my consultant has told me nothing apart from that I'm having it, but I've been told an isolation period afterwards of ~12 weeks is recommended. I get that my immune system will be totally trashed but other than that have no information. I will ask my consultant but anyone have any practical experience or advice please?
Hi again I have had two Allo (donor) SCTs so do understand the journey you are embarking on.
First we do have a dedicated Stem cell transplant group where you can talk with others from various blood cancer who have been on the SCT rollercoaster.
Yes your immune system will be killed off before you receive your harvested Stem Cells back and recovery can be completely different as each journey can be so different. The good thing is recovery after an Auto SCT (your cells) can be much quicker but most folks having an Auto SCT are told 3-6 months recovery - An Allo SCT can be as longer as 6 months to a year…… my second Allo SCT was a two year recovery.
It is expected that you will have a few post SCT infections requiring hospital admission in the first 6-12 months post SCT so this is why your team are saying 12 weeks.
This is 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 more chemo that can be strong.
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 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 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 using some very strong chemotherapy and for some like myself, Radiotherapy..... but I had an Allo SCT.
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.
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 Bone Marrow 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.
This is an ongoing threads in our SCT Group covering being in a SCT Unit Checklist for SCT Unit
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.
Thanks Mike. A very comprehensive and complete account of what I'm likely to expect. It doesn't feel like an easy ride but the alternative isn't that great either :-)
Hi again do keep in mind that an Auto SCT is much easier than an Allo SCT as there are less post treatment effects and recovery is very much quicker.
Do also join and post in our dedicated Stem cell transplant group as this will open you up to a wider group of people who have walked the SCT walk…… and yes, without SCT I would have been gone 5-6 years back and not be around talking with you today.
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