Thank you for adding me to the group, I'm not very good with this mobile technology so please bare with me.
I have been given a date for early January to start the chemo in ready for transplant, if all goes well with pre tests on both myself and donor.
I mentioned my situation on another open forum for myelofibrosis and got blasted with lots of very negative comments, stories and advise. I find the whole process pretty daunting as it is so regret my post.
I would be grateful to hear from others who have had the procedure and their experience. My dilemma is that for the past month I have been the best I have for months due to medication kicking in along with regular transfusion, but will be taken off these soon and informed if I was to stay on them for a long period and not go down the SCT route then they have no guarantees.
Hi again Tim64 and well done navigating across to our little corner.
As I said in your other post the SCT process is basically the same regardless the type of blood cancer. Yes there are differences in the 'Conditioning' (Chemo/Radiotherapy/Targeted Therapy) treatments used to take down your immune system in preparation for receiving your donor Stem Cells.... but on the whole the journey pans out much the same.
You can see my and other group members stories if you hit our community names or for my story the link at the bottom.
You have to watch where and what you read...... it's like TripAdvisor...... and holidays. The worst experiences are always most noticable. This old thread may be a good read SCT Success Stories.
People go into SCT for various reasons.... but mainly looking for long term remission and for people like myself it was a life of death choice.
There are a few folks with Myelofibrosis have come through the group so why not put Myelofibrosis into the search tool 
near the top and look at the older posts.
There is no hiding the fact that an Allo SCT can be hard work with various lengths of recovery post SCT. There is also the chance of developing other health conditions because of the process...... but you have to weigh up the long term benefits. Even two people with the exact same blood cancer going through the exact same SCT process will have completely different experiences.
I will post this PDF here again Understanding donor stem cell transplant but it does contain a lot of information so below is my Allo SCT simple version.
Open to all questions and always around to help you navigate this journey.
This is my Simple Guide to an Allo (Allogenic) Stem Cell Transplant (SCT).
Stem Cell Transplant does sound scary in the early days when you are getting your head round it but it is a very clever way of get folks into long term remission.
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 patient's immune system and in doing this looking to overwrite 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 your 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.
It's all very clever, 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 get your own on-suite room and yes you do get visitors (some people think they have to live in a bubble) as long as every one is healthy its no problem but some units will have rules about little children.
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 careful 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 bloodstream.
I would also say that the fatigue following a SCT is much higher than going through regular chemo but that could just be me.
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, so gathering clear information can help you fight the battle between your ears.
