• 10 replies
  • 11 subscribers

Hi.    Vespa here.   AKA. Kevin.  I have kinda worked my way through the forums.    MM.   now to STC.  and some great advice and support on the way.       Diagnosed in.  June.   4 cycles of DVTd.       Now on no meds at home.      Been given 4. Home injection treatments to mobilise my stem cells.  29-1/1/24.   Then in for harvesting on 3/1/24.         If all goes well!!!          Enough for 2 transplants.       Transplant.  Auto set for 29/1/24.  Subject to body checks. Heart.  Lungs etc.  and blood.       Any advice in preparation for this would be appreciated.       I have been given.  Plain  speaking advice on what to expect from the.  Consultant and SCT Nursing staff.      Kevin 

  • Hi again Kevin  and welcome across to this little corner of the community.

    As you may remember I don't have MM...... but a very rare (7 in a million) incurable type of Skin - Non Hodgkin's Lymphoma.

    Auto SCT would have been like using a water pistol to put out a first fire for me...... so I had to go straight to Allo SCT...... in fact I had 2..... long story that can be found in my profile.

    My brother was my donor and he said the harvest process was very straightforward........ just a long sit.

    He did have to have 2 days harvest for each of my Allo SCTs but this is rather normal....... even for a big strong lad who had no health issues.

    I was totally clueless about Stem Cell Harvest and for some reason I thought I would only need 10-20 cells....!!!!! so I promised him a £1 for every cell he gave me......... he now lives on a yacht in the med ;)

    I also have asbestosis so my pre SCT Respiratory tests were very extensive...... but as SCT at the time (June 2014 then Oct 2015) was my last hope we agreed that the risk factory was acceptable...... and I did sign a waiver to agree to this.

    As I said I had two Allo SCTs so two ‘Talks’ with my SCT teams.

    The first one was indeed challenging and yes, very scary and a lot of the info went over our heads. We were like rabbits caught in headlights as our attention was often focused on the bad things that could happen and we totally missed the good parts.

    My first Allo SCT did not work so going through our second ‘Talk’ was nowhere near as scary as we had the T-Shirt…… apart from “Mike if this does not work we don’t have much tools left in the box”

    The ‘Talk’ is where your team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving your tram permission to take you to the point of being open to life threatening infections and side effects……. then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.

    The talk is not there to scare you, but to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.

    I have talked with many people post SCT and a very high percentage will agree that the SCT process was nowhere near as bad as what was said during the ‘Talk’ and in all the info provided........ the main thing people talk about was the boredom..... but obviously there can be bumps in the process as seen in my profile.

    Enough for 2 transplants

    I have yet to talk with someone who had had 2 Auto SCTs but a good number do have an Auto then and Allo..... and over my 8 years I have not talked with someone who had has 2 Allo's.

    I could not reply to you last night as we were on the late fight back from London after having Christmas Take 1 with our 3 granddaughters who live in Surrey as we will not see them on Christmas....... I say this as it does indicate that 'life' does return post SCT.

    Any specific questions just ask and we will try and give you an honest reply.

    This is a copy and paste

    Stem Cell Transplant - my very ‘simple’ guide.

    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.

    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 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 through this.

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

    This link is actually take from the Lymphoma Action site where I help out but the Top tips for stem cell transplants go across all cancer types.

    There are many types of conditioning but look out for a drug called Melphalan being part of the treatment

    I received the M the day before I got my donor cells. So 30mins before the start of the M infusion they gave me some Paracetamol 'why the Paracetamol?' I asked 'You will find out' and also put a freezer bag full of Ice lollies on my table...... so I chain sucked these ice lollies for the 30mins before, during the M infusion that took about 30mins then was told to keep going for a further 30mins.

    I lost count but must have had 30.......... and the mother of all freeze brains every...... hence the Paracetamol.

    Over the years I have talk with people who’s SCT units don't give ice lollies!!!!! so if this is you just go out and get them and the ward staff will put them in the freezer until you need them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thank you Mike,    for the   SCT  info,  but also the bit about   life returning   and your trip  down to the " Smoke"  of London   Town,    have a safe and enjoyable Christmas time  with family and friends,  and lets hope you at least get the White Christmas   !   Kevin

  • Hi Vespa my husband has MMand he had his autologous stem cell transplant end if September .  He was treated at UCLH and they have a hotel just across the road from their MacMillan unit . You stay in the hotel and receive your care as an out patient it’s called ambulatory care and you go daily to the unit for bloods or transfusions after your transplant and your given emergency numbers if you feel unwell or your temperature rises and they then admit you into hospital.  The big plus side of this is you can have  someone stay with you at the hotel , your not confined to a hospital bed whilst you feel relatively well and as was my husbands case he never ended up in hospital he stayed in ambulatory care all the way through he had a few days where he was tired and a slightly dodgy stomach but most days managed a walk .  We stayed in London for just under 3 weeks until his blood counts and platelets recovered to a suitable level and then was allowed home .  I know he was very lucky and fingers crossed you will be as well . 

  • Thank you for the   reply,  and i hope your husband has made a full recovery   from the SCT      i am  due in for  harvest of stem cells  on the  3 rd,  but they  want me in on the 2nd after some body tests at   my   local hospital in Worcester,  the  SCT    unit is in Birmingham   QE   hospital  and they also have offered overnight    accommodation,      on the  2nd  and 3rd if needed for the harvest time of the Stem cells,        i am presently self  administering   my injections for the Stem cell  mobilisation,         its straight forward    but has brought me  a lot of back pain,         i do think  i will be "  on ward"   post transplant,   but     i can  re-locate to  Worcester    hospital  for my recuperation,    under  high care,     this is an easier   location for my wife to visit and support,      Kevin   

  • Mike   i never  thanked you for the   "  simple "  guide to the SCT  i have shared this with my family,  particularly the  boys down under,  who  feel a bit remote to what's happening to me,  it enabled   them to understand the   process,  as there is not a day goes by,  even  with the  time zone differences,  that   my sons and lovely daughter in law   make contact with me,       so thank you and  best for  your continued good health in 2024  Kevin 

  • Hi Kevin  and first let’s look for 2024 to be a positive year brining good health with it.

    Pleased that you and your family have found my ‘simple guide’ to SCT helpful…… SCT has been a go-to treatment process for many many years and provides a great platform to get into long term remission…… 

    It is important for you and your family to resist the temptation to Google all things SCT…… as you will get a 1000 hits but lots of the information is confusing, often out of date and let’s face it - when you look at reviews on any subject you always see the bad reports more than the good as people just get on with enjoying life with what they get.

    Any questions you have just put them up in the group as someone will have had first hand experience to help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • We are in London on Thursday he was +100 days last Friday and thank you he is feeling really well .  Good luck with harvest and transplant it can make such a difference once you are fully recovered. 

  • Hi thank you for  the response and positive outlook,     so  Stem Cell harvest   achieved this week,  with some  incredible,    wonderful staff at the QE Hospital Birmingham,    enough for 2 transplants harvested,  not without its

     " issues"   but    done in the end,     what's next,   so SCT  now  planned for mid Janurary and i prepare myself and my family that support me for the next part of the journey,  and the Wonderful Macmillan  charity  also supporting me/us


  • Glad your harvest was successful and good luck with your transplant,,

  • Good to hear this step is now done…… keep on keeping on was our mindset.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge