Hi again JohnT2 sorry to hear this.
What type of Stem Cell Transplant (SCT) will you be having?……. an Autologous SCT (Auto) using your own Stem Cells or an Allogeneic (Allo) with Stem Cells from a matched donor?
I had 2 Allo SCTs the first in June 2014 with my second in Oct 2015……
The time in the SCT unit will depend on the type of SCT you are having and if you have any infections - they say on average the time in the SCT unit is about 4 - 6 weeks. I was in the SCT unit for 28 nights for my first Allo SCT and 29 nights for my second Allo….
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my treatment journey was rather complicated (See my story) but I am over 9 years 9 month out from my last treatment, I turn 70 this year and I doing great.
Stem Cell Transplant does sound scary in the early days when you are getting your head round it but it is a very cleaver way of get folks into long term remission.
Happy to answer any questions but below is my ‘Simple guide to Stem Cell Transplant’
The idea behind SCT is to give you an all new Immune System.
An Autologous SCT (Auto) when using your own Stem Cells involves getting the patient into a condition that no cancer is evident this is normally done by using very strong chemo then the patients Stem Cells will be harvested.
The patient will often have a week of injections (once a day) to help the Bone Marrow make lots of Stem Cells.
Then on the day of harvesting the cells two lines are put into the arms - one out, one in. 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, just a lot of sitting around.
The Stem Cells are then stored until it's time to use them. The method is called cryopreservation: it freezes stem cells at temperatures below -150oC, by immersing them in nitrogen vapour. When required, they are defrosted in a water bath and are put back into the body through a central line.
An Auto then requires what we call Conditioning to happen. This is done to take down the immune system completely. This is usually done using some more Chemo - but its only for a few days.
Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion.
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 as the body start 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.
Due to the very specialised nature of a SCT it is often done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, you often 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 kids back in. You will be an inpatient for some of the time but this all depends on how fast the ’New You’ starts to grow.
An Allogeneic (Allo) is the other main type of SCT. Often used due to how a persons condition has developed or their team can’t get them in to a position to harvest their own Stem Cells.
The aim is to get them into a position where there is no cancer active but for me that was never the case so we went for it and riled the dice.
An Allo SCT also requires a few days conditioning and then you receive Stem Cells harvested from a matched donor. A person from your family or from the world wide Stem Cell Donor Register.
An Allo is often seen as the harder of the two SCT treatments as you is open to GvHD (Graft verses Host Disease) This actually happens in all types of organ transplants like heart and lungs.
GvHD is where your body does it's best to reject the new Stem Cells, they see the new cells like an infection so try’s to kill them off but during the first 109 days or so you are given drugs that will stop your body trying to kill the new cells. But eventually these drugs are reduced as the blood tests show the new cells have grown in number and are now able to take control on their own.
Thus is when the real battle starts for the new cells to take 100% control of your body and by doing this the cancer is overwritten and in remission or even cured.
Some Auto and Allo SCT treatment plans may also require Radiotherapy.
I would say that the fatigue and infection risk following a SCT is much higher than that going through your regular chemo but that could just be me.
An interesting thing that happens during an Allo SCT is your blood type my change due to match the blood type of your donor and you will have to get most of your childhood vaccinations again as the process kills them off!!
For an Auto SCT a part of the conditioning treatment used to kill off your immune system can be done as an outpatient but once your immune system is ‘down’ you need the safety of the unit.
On average it takes about 10 days for your all new immune system to start to kick in after 0 day…… and it then depends on how quickly it grows before you get out.
I got out of the SCT unit on day T+17 for my first Allo SCT then on day T+20 for my second Allo SCT….. although my counts were still at 0 I was still sent home and they stayed at 0 for a few months but it was safer for me to be at home rather in the unit as a few bugs had found there way in to the unit.
Are you in the UK?
You may find these links helpful…..
Self (autologous) stem cell transplants
Top tips for stem cell transplants
I asked you if you were in the UK as this now opens you up to a much larger support base through Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment (all the links I post are taken from the LA website)
They run various Support Platforms… I highly recommend these groups… the main online group has 5800 members and many members have navigated the exact same path as you are on.
These groups will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey…… so you can be linked up with someone who has actually been through SCT…… and you never know you could end up talking with me as I am an LA Buddy.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
