Hi,
I wondered if anyone would know the answer to my question.
My Brother 25, was diagnosed with AML in October and has had two rounds of chemotherapy treatment.
He now has a donor for a stem cell transplant and he is booked in for the middle of February after his 3rd round of treatment to have the procedure in hospital.
As I am his only visitor and care giver I am worried that they may put him in isolation before during and after his transplant without any visitors due to covid.
Has anyone else had a Sct during the pandemic and had to isolate with no visitors allowed?
Any help would be much appreciated
Thank you
Hi again GEKAvaa dngood to see you have navigated across to the group and I see you have already received some great help.
My two Allo (donor) Stem Cell Transplants (SCT) were in June 2014 then Oct 2014 so not in cover times. We live in Inverness but my SCTs were in Glasgow so my wife and I had to stay in Glasgow for 4 weeks for my first SCT then 7 weeks for my second.
My wife actually had a room next to the ward so could be with me as much as she wanted........ but honestly, there were many days she could have been 1000miles away as I was totally oblivious to her being there. This was mainly due to the strong meds I had to be on due to my lifelong allergies.
As for your brothers situation and who if any will get into to see him is a question he needs to put to his SCT centre. He will need washing etc done so this is a question that needs to be asked.
You may find this thread Checklist for SCT Unit a good place to see what group members found helpful to have when in the SCT Unit.
Keeping clear of Infection during and following SCT is a challenge so some clear rules who can visit him in that everyone needs to be bug free and I am not just talking about covid - a small cold to someone could develop into a full on infection to him.
The group is here to walk this with you.
There a lot of information available and reading it can be challenging and scary but in the 36 years since the first Stem Cell Transplant was done the developments in the treatment are amazing moving it from a very unique and risky process to one that is done day in day our all over the country.
This is my Simple Guide to an Allo (Allogenic) Stem Cell Transplant (SCT).
An Allo SCT is the method of a patient receiving Stem Cells from a matched donor and these Stem Cells are basically used to reboot the patients immune system and in doing this looking to over write the cancer cells in the blood and Bone Marrow.
The preference would be a blood related donor and family members can be tested using a very simple test, normally a blood test. The Anthony Nolan register just gets prospective donors to do a internal cheek swab and between the Anthony Nolan register and the other World Wide Stem Cell registers your SCT team will look for a match and a 10/10 match being the best. There is even research going on looking at a Haplo SCT - Half Match Donors
The Stem Cells will be harvested by putting a line into the donors 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 and can be transported World Wide in special containers.
Leading up to the actual SCT the patient may have been through various types of treatments to get to a stage where an Allo can proceed. 7ish days leading up to the SCT day the patient 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 in some cases Radiotherapy. Once the Immune System is taken down they give the harvested Stem Cells to the patient 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 very do-able and it’s also worth saying that I went into both my Allo SCTs with active cancer cells in my body.
Due to the very specialised nature of a SCT it normally done in a dedicated SCT unit. Its a very clean environment (Ward) in a hospital, you may get your own on-suite room
Remember you don’t 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 your new immune system kicks back in. You will be an in-patient for some of the time but this all depends on how fast the ’New You’ starts to grow.
The patient needs to be carful during the weeks following the SCT as the new Immune System is still growing so care with coming in contact with infectious environments like crowds in supermarket, restaurants, cinema etc but your team will give you some guidelines. You will also have weekly clinic appointments just so your team keep an eye on you.
An Allo SCT is often seen as the harder of the SCT treatments as you are open to GvHD (Graft verses Host Disease) where the your body does it's very best to reject the new Stem Cells. At about day 100 your team will do a special blood test that checks to see how the graft of the new Stem Cells is getting on.
The patient will also be on an anti-rejection/immunosuppressant drug like Cyclosporin. This works like a type of referee between your own blood cells and the new cells as they fight for dominance. To be honest its not a great drug but a necessary evil of the process and if the results of the 100 days test come back OK the team will start to reduce the Cyclosporin. My team actually told me that they were happy to see some GvHD activity as this showed the battle was being fought in my blood stream.
I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me.
Understanding donor stem cell transplant (allogeneic) - you can see the PDF here
You will have lots of questions so you will find the group here to help in any way.
