Hi all I'm new to group
I'm currently receiving RCHOP after relapse after 5 years I has RCVP then ritux maintenance was in good remission till this year when my lymphoma changed from slow growing to fast growing aggressive
I've not really had a lot of info as I'm still on RCHOP round 3 just completed Tuesday. Awaiting PET scan to see if it's do I no tge job
The lovely highlander has explained more than my team! O do injections from day 8 after chemo fir 5 days
All I was really told is we need to get you fit for stem cell and into good remission so don't actually know how much further down the line this will be
My son gets married next July I'm hoping it's not before then but I've honestly no idea what's going to happen I get 6 cycles RCHOP so I'm finished that end if June I'm not sure if I will receive maintenance after it either
Hi again and good to see you put up your post. Here is my simple guide to an Auto SCT.
For an Auto SCT you will have to be in a window of remission so that your Stem Cells can be harvested. The is done by putting a line into your 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 you will have to have treatments to get to a stage where an SCT can proceed.
So 7ish days leading up to the SCT day you 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.
Once the Immune System is taken down they give your harvested Stem Cells back to you 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 you are ready to get your cells this is done in a dedicated SCT unit.
Its a very clean environment (Ward) in a hospital, you may even get your own on-suite room. The time in the unit will be different for everyone but expect at least a few weeks - but your team will tell you more.
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.
Once you get out you do need to be very carful during the weeks following the SCT as your new Immune System is still growing so care with coming in contact with infectious environments but your team will give you some guidelines.
Expect weekly appointments for bloods etc as they will want to keep an eye on you
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 but your team will help you out.
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 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.
Hi Mike
Thanks again I will talk to my consultant next appointment I have PET scan 4th May so fingers crossed the chemo is doing its job .Steroids days over I always drop like a brick seem to be fine tge 4 days of steroids after chemo the can't eat much get sore legs
I have a wee cough loads of mucus but I had it through my subcut rituximab same cough sane symptoms another thing I may have to bring up
Added to that I really needed dental treatment but they needed to start chemo quickly my teeth are crumbling at base I'm gutted they needed filled with the pandemic couldn't get them done not they will need removed I'm wondering if after my last chemo I will be able to have the work done
I think I really do need to start asking questions was still in shock and lost my mum in care home in May aged 70 full capacity I think the grief played a major part in my fast relapse but who knows
Thank you for explaining all that will be glad to get a break after the chemo hopefully for a year depending on what they say
Have a lovely day all
It’s all very challenging and you do need to take each day as it comes.
So sorry to hear about your mum, I lost my 91 year old mum back in November..... after a quick 100 mile drive to Aberdeen and a long discussion with the hospital staff we decided that it was not a Covid safe environment for me due to my permanently reduced immune system... my wife was able to be with her for five minutes before she peacefully passed...... Covid funerals are rather bizarre but we did her proud and even had a piper walk us to the graveside.
Questions are so important as this is the only way you will get a handle on what the future looks like..... so get yourself a note book and start putting down every question that comes to mind, some can be answered in the group but others need to go to your team..... a clear understanding turns the noise down between the ears.
Before you can be presented for a Stem Cell Transplant you will need to go through a series of tests and examinations to ensure you are healthy enough for the procedure to be carried out.
If your team think you are not fit to do the process you will not be able to proceed
A Stem Cell Transplant tend to be more successful in people who are in good general health, despite their underlying condition and age. But I know many 70 year olds go successfully through SCT. I had a few underlying health issues including Asbestos but it did not stop the process.
The tests and examinations you will have are:
An electrocardiograph (ECG) to check your heart's rhythm and electrical activity
An echocardiogram scan used to look at your heart and nearby blood vessels
An X-Ray or CT to check the condition of your organs such as the lungs and liver
A very detailed Lung Function test to check your lung function and lung capacity
A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.
Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working and to have data to enable accurate post Stem Cell Transplant to check on transplant engraftment.
We had a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so they want to make sure you understand what you are letting yourself in for.
We also meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.
Happy to talk more.
Hi Mike
Yeah my detal problems will have to be addressed after chemo definitely I won't get stem cell till they are sorted
I'm 52 all she's really said is get you into good remission again and fit for stem cell thought because I was getting tge 5 days injections it was going to be soon but I'm assuming that's just to help grow my cells
Think I need a big notebook next appointment
If you have seen my profile you will see that I was 58 and 59 for each of my SCTs so you are young ;)
Yes the injections are to give your bone marrow a good wake up call to make lots of Stem Cells.
I was on G-CSF injections once a day for 4 months following my second Stem Cell Transplant..... I did them after breakfast every morning. I took a few Paracetamol with breakfast then did the injection.
Bone pain can be a problem as the marrow gets very active so bone pain comes along... i had no real bone pain and I was told that this was down to my team prescribing Piriton or Clarityn Antihistamine as this bizarrely stopped the pain developing, these were taken as per the dose instructions - worth talking your team about this as not a lot of hospitals do this.
Again all questions are welcome.
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