Just had stem cells harvested

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Hi, I am on this journey with my husband who was diagnosed with MM the end of December 2022. 
he has just had 2 days of harvesting at KCH. 1st day they only managed to get 1.7 million stem cells but yesterday was a good day and they managed to get 4.5 million. 
We therefore wait for the date for the transplant. 
We would be interested to know of people’s journey and experiences through the process. The ups and downs, no sugar coating. I am an ex ICU nurse and feel the need to know potential bumps in the road. Husband suffers with anxiety so I want to support him as much as I can and my way to do that is to be ultra prepared. 
Thank you all 

  • Hi again  and well done putting up your post and welcome to the SCT adventure.

    My story is rather complicated (See my story) but I am over 7 years 9 months out from my second SCT and turned 67 last Nov and doing great…… although if you look at my story I did have a few bumps in the SCT process.

    Preparing for going through the time in the SCT Unit is important so this old post is a place where group members have collected the things that helped them go through there time in the SCT unit - Checklist for SCT Unit and this link is taken from the Lymphoma Action site but again has some good first hand tips for the SCT process Top tips for stem cell transplants

    This is my SCT made simple Wink

    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.

    Understanding stem cell transplants using your own cells (autologous) - PDF here.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hello MUFC

    i had my STC in September 21. I won’t sugarcoat it ,as it was very very tough. I would doubt if your husband will sail through it unscathed and this is mainly due to the Melphalan which is a very strong Chemo. His immune system will be nil immediately after and he will feel very unwell. There are too many side effects to list that he ( might ) get. Everyone is different as you know and some people are lucky to have had just one or two. Unfortunately that was not what happened in my case…….. But today I am great! Enjoying life. Oh I have a few niggles here and there but just so grateful to be Myeloma free at the moment.  Would I do it again? Absolutely 

    He will be in great hands of experts and they are all so experienced in their field and the care is amazing. Everyone is there to do their very best for him.  I wish your husband and yourself all the very best for the SCT and if there’s is any particular question you want to ask regarding my experience please feel free.

  • Thanks Mardan. That’s exactly what I wanted to know. Husband has had a few hospital admissions for infections so I imagine he will be quite susceptible once his immune system is compromised. 
    Can I asked some basic questions please? Can we take a blanket from home in with him? Are you able to wear your own pyjamas etc. How long (usually) does the hospital stay last. 
    Once again thank you for your response 

  • Hi  good to hear from you again,

    I can only talk about my journey but taking stuff in will depend on your husbands SCT unit.

    My SCT Unit was in Glasgow and it did not allow us to take in any bedding in unless we could change it everyday with a clean bedding…… as bedding had to be changed every day…… this was the same with cloths…….. this was made more challenging as we were a 9 hr round trip drive away from home so it was hard work for my wife to be away from home so we packed 10 days worth of cloths and this allowed her to go over to our daughters in Edinburgh to get stuff washed for the next week.

    I could take any day and night cloths in but had to have a complete change every day…… I stress that not everywhere will be the same so it’s questions you need to put to his SCT Centre. We meet my dedicated SCT Coordinator and she showed us round the unit before I went in….. and we also had her contact details to put questions to her to get answers to all or concerns in the lead up to going in to the unit.  

    I had 2 Allo SCTs so I was in the unit for 28 and 29 days for each of my SCTs

    Do look at the two links I put in my first reply as they detail the things that people found helpful to have in the SCT unit.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks Mike. I thought that possibly we wouldn’t be able to take in a nice comfy blanket Face palm tone2 I have met our CNS but not had the opportunity to ask those questions yet. We are going to Kings in London which is only about a 75 minute drive away so can change and wash things relatively easily if need be. 

  • Start you list of things he was thinking of talking in so you can remember to ask about them.

    As I said look at the two link below

    Checklist for SCT Unit

    and

     Top tips for stem cell transplants

    ….,. as there are some good tips.

    The one thing to ask is what conditioning treatment is he having. Conditioning treatment is the chemo (I had one with no chemo for my first SCT) that is used to kill off his immune system just before he gets his Sten Cells back as I am sure that someone in the group will have had it.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Hello MUFC.  I’m sorry I can’t really answer your question regarding a blanket. My stay was throughout Covid so my Haematology ward were obsessed with infection control therefore no pillows or bedding from home were allowed. I suggest you ask the ward as every hospital have their own policy I would think. Yes I wore my own nightwear but for a few weeks when I was really poorly it was easier for myself and the staff to wear a hospital gown. I would not be expecting a discharge for at LEAST 4 weeks.
    If your husband is interested…. I found after the first week or so Audiobooks were my saviour as I couldn’t consentrate to read or do puzzles etc.  

  • Iam new to this I have Myeloma and had my stem cells taken and frozen. I am just waiting on word to go into hospital. I've had chemotherapy and was wondering does having the stem cells a better option iam just a bit frightened.

  • Hi  and welcome.

    First getting the Stem Cells is rather an anticlimax, it’s just like getting blood and is not painful in anyway

    As you are having your own Stem Cell returned there is less chances of problems later on compared to having a Donor Stem Cell Transplant as your body is going to see your stem cells as friendly….. in a donor SCT the patients body try’s to kill the donor cells so this can develop problems.

    There is a period following getting your cells where you are more open to infections until your new immune system grows.

    If you look at my early reply you will see the basic SCT process described including some useful links.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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