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  1. Hi everyone, I have been introduced to the group by the highlander, thank you. I am undergoing chemo at the moment for the second time in 3 years for Non-Hodgkins Folicular Lymphoma and they hope to be able to put me in for SCT. I look forward to scrolling through all of your comments. At the monent I will be having questions to the Consultants about the strength of my heart as it seems to be a rigorous process. Due to low blood pressure I have been advised to only take my beta blocker as a remedy. Since then I have been feeling my heart pumping when moving or standing, so I gave in today and took a beta blocker and feel better. Does anyone else have any heart problems? Thank you Helen.
  • Hi Helen  and welcome across to our little corner where my navigate the Magical Mystery Tour that is SCT together.

    Magical as it's amazing what SCT can do....... A Mystery as to how it works....... and a Tour as there is always twists and turns as no one journey is exactly the same.

    I think you said that as yet you don't know what of the two types of SCT you will be having. Self (autologous) stem cell transplants (Auto SCT for short) or Donor (allogeneic) stem cell transplants (Allo SCT for short)

    I did not have heart problems going into both my Allo SCTs......... but I do now having had a bad reaction to my very last chemo during my second Allo SCT............ that was over 8 years ago........ I was put on heart meds as I was left with AFib.......... and eventually had a heart attack back in April 2022 but a few stents latet and I am doing great.

    Before you can be presented for a Stem Cell Transplant you will indeed 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.

    The tests and examinations you may have are (I had all these 2 times once each for both my Allo's):

    *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........ this was an issue for me as I have Asbestosis so it was eventually seen as an acceptable risk factor.

    *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.

    *For an Allo SCTs blood tests are used to have data to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraftment.

    *A very long ‘talk’ with a SCT consultant going through all the process including all the ups and downs that will come along.

    The unit I was treated in we meet my SCT coordinator and was given a walk round the SCT unit.

    We also had a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for. The Phycologist also come in once a week to see us when I was in the SCT unit.

    We also were seen by a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work and ensure we were getting all the benefits that were available to us.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thank you, I am scheduled for Auto, most helpful xx

  • You can read a lot of information and it can be overwhelming but this is my very ‘simple’ guide to 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. 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 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 with out 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 Bonemarrow 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 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.

    Its 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 carful 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 though this.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hi all, Highlander, that's about as good and simple as any explanation iv'e heard and read about it,  well done ClapClap

  • Hi  …… and thanks…… it reduces a LOT of pages into a few minutes read Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge