Hi all,
My partner is ~30 and about to go through a stem cell transplant, for refractory Hodgkins, with LACE conditioning chemo starting Monday. Is there anyone here who has been through this treatment, or know someone who did, and could talk through their experience, how to prepare, what to expect (side effects. recovery,..), what to bring to the hospital etc.?
She finds it calming to know as much as possible what to expect and how the experience was for others
If you are willing to share your experience, please do reach out.
Thank you all and wishing you all the best, strength and sending support for what brought you to this forum
Michael
Hi Michael MKBE and well done navigating across to our little corner of the community.
As I said I have had 2 Allo (donour) Stem Cell Transplants (SCT) the first in June 2014 then a second in Oct 2015 and I remain in remission to this day. I am not going to say this the process is easy.....it can be challenging in many ways..... but it is do-able and worth it.
It is generally accepted that an Auto SCT tends to have less post SCT treatment challenges compared to an Allo SCT...... but the actual time in the SCT unit when the immune system is taken down is generally the same.
There are a number of conditionings used and LACE is one..... These treatments tend to be full on but only last for up to about a week but at times much less..... the fact that LACE does not have the drug Melphalan in it as in BEAM means that there will be a reduced chance of mouth issues and this helps with eating and general recovery.
But mouth issues can still be a challenge so what every mouth care treatments she is given she must use them religiously. I set my phone alarms for every few hours throughout each day I was in the unit so I was using the mouth care correctly and only did have one small ulcer.
As for the process the links below will help you do the pre-prep.
The first links are a collection of peoples thought about what was good to have when being in the SCT unit....... Top tips for stem cell transplants and this older thread in this group Checklist for SCT Unit
You can see from my story that I live in Inverness but my SCT unit was down in Glasgow so a 8 hour round trip drive so it looked like we were going on a world cruise as we had to pack everything to last for a month each time.
These are general info pages.
Self (autologous) stem cell transplants
I am sure that you will have other specific questions so do ask them.
This is my simple’ guide to a Stem Cell Transplant.
For an Auto SCT (using your own Stem Cells) 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 their arm. It's 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 bone-marrow 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.
Those having an Allo (donor) SCT the harvest process is done by their donor without the chemo as their Stem Cells are cancer free.
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 just like getting a blood transfusion usually 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 all very do-able.
Each SCT Unit will do their own thing but for an Auto SCT some of the conditioning can be done as an out-patient then when the patient is get closer to get the cells this is done in a dedicated SCT unit.
It's 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 careful 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.
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 through this.
