MM an introduction

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Hi, I was diagnosed with MM on 12th December and have recently received my first 2 treatments. I am in the Canary Islands  where I have lived for the past 17yrs. I use the Spanish health system. On visiting my consultant prior to the 1st weekly treatment he told me because I was you ng at 67yrs old that he was placing me on an immunotherapy course of treatment and not chemotherapy. My plans are to continue this treatment until March when they will harvest my bone marrow then grow the good cells with the intention of having an SCT in June. There is a slight language problem he speaks good English and I can fill in with my spanish.he seems an excellent young consultant. All the staff in the day hospital are tremendous with various degrees of English spoken they make you feel special and after the 1st week all knew who I was my name where I was from etc from the receptionist to the nurses and doctors. I am on several drugs but some of them appear to be used for chemotherapy  so when on immunotherapy does a certain amount of chemo take place. After my 1st treatment I was sore,the pain is in my spine but had headaches and felt sick. However after my 2nd treatment all that has gone away at the moment. This article is only to introduce myself and I hope to post more relevant details later. Onwards and upwards, and how I feel at the moment couldn't be more positive.  In my position it is brilliant that I could join your forum, as I appreciate from my point of view details can get lost in translation .Thanks

  • Hi  and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your diagnosis.

    I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

    But more importantly I had had 2 Allograft (donor) Stem Cell Transplants (SCT) the first in June 2014 then Oct 2015 and I remain in remission to this day.

    You are having an Autologous SCT often called Auto SCT for short. I could not have an Auto SCT as I could not be put into remission for my clean Stem Cells to be harvested so had to go straight to Allo SCT.

    When the Auto SCT process is boiled down to a few steps it is rather straightforward.

    You have chemotherapy that puts you into remission 

    Your clean Stem Cells are harvested (like giving blood) and are frozen.

    You have some strong Chemotherapy that takes your immune system down…… basically your bone marrow is not functioning.

    You get your harvested Stem Cells back.

    Your all new immune system:bone marrow grows.

    It’s Jesus good to talk with others who have navigated the SCT Rollercoaster so this is why we have a dedicated Stem Cell Transplant support group where people from different blood cancer support each other on the SCT journey.

    Do join the group and introduce yourself…… but in the meantime au am around to chat and answer questions.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks for that information what I suspected but great to have it confirmed,  have had a look at SCT site and that is very interesting,  will be seeking more info on future to confirm my translation from Spanish. Cheers

  • Good that you found my post helpful.

    This is copy and paste….. but it’s my very ‘simple’ guide to Stem Cell Transplant put a few links (although these links are taken form a Kymphoma site the information translates across all blood cancer going through SCT)

    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.

    Self (autologous) stem cell transplants

    Having a stem cell transplant

    Top tips for stem cell transplants

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi   this is Kevin, Male  66  UK  with MM  from June 2023,    i had 4  cycles of the go to treatment plan  Which is called   DVTB   a combination of  Chemo and Immunotherapy  drugs,     just had my Stem Cell Harvest  ( yesterday)  took 2 days,   SCT  now planned for January,    mid    for Transplant,    i am sure the treatments are  very similar and you can find out the UK     plans on both Macmillan,  Blood cancer.org and of course    the NHS     so  i am sure there are not that many differences,    the Chemo drugs   VELCADE   and the immunotherapy   treatment called Daratumubub    alongside  Thalidomide   taken in tablet form at home,     you did not mention anything about  side effect   medication or  preventative medications for     shingles,  cold sores   antibiotics, etc,    these were part of my treatment plan and got me into remmison    in  4 months,     best wishes  from the UK  Kevin

  • Hi thanks for that explanation , I think I got about 80% of what is on here through my Spanish but it's a real comfort to see it written down and even easier to inform friends and family. For some reason I thought they were extracting bone marrow on the harvest and not blood. Big relief. Thanks again for putting my mind at ease. Brilliant site.

  • Thanks for input, after 1st treatment I felt awful for a week, I had only supplied small sample of urine, lost in translation. Last week supplied previous 24hrs urine about 2litres, treatment must have been adjusted accordingly and feel ok this week bit tired but a whole lot less bone pain. Feeling more confident by the day, got to say staff excellent... As well as tablet drugs taken at home I am on Daratumubub and Bortezomid injections at the day hospital

  • Good morning  I am pleased that my quick guide helped you consolidate your understanding.

    There are still a small number of Bone Marrow Transplants done…… but as the term SCT was used my your team I am sure that your clean Stem Cells will be taken from your peripheral bloods……. It’s all very clever.

    Apart from some preservative (that gIves the sweet-corn smell on the day of transplant) they are frozen and no re-engineering is done to them.

    As I said I could not be put into remission to even have harvesting done, but even if I could have been put into remission, Allo (donor) SCT was the only way that my rare condition could be controlled (you can see my full story in the link at the bottom of my posts)….. and it’s worth saying that I went into both my SCTs still with active cancer cells in my body and on my skin.

    I had no idea how SCT worked and I thought I only needed 20+ cells!!!!!…. My brother was my donor for both SCTs and I told him I would give him a pound for every cell he gave me…… he now lives on a yacht in the Med Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi    again,   are they  also taking  routine blood tests  from you ?      for me,  the peripheral Neuropathy    was    painful,      hip pain from Lesions on my hip  that showed up post  MRI