Stem cell transplant

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Hi ,I've found this group via the Myeloma group

 I have Myeloma and am about to start the 4th cycle of Dara VTD treatment. Talk today at the hospital review was of Stem cell transplant .I have decided to go for a Stem cell harvest but cannot decide yet if I want to go for the Stem cell transplant . For me its a huge decision to make ,I know its my choice and I am listening to all the advice given to me by the hospital team Any advice would be welcome .How have people managed the transplant ? Effects on family members etc .. 

  • Hi again  and welcome to the Stem Cell Transplant group.

    I was looking through your older posts and you say you are from the North East of Scotland….. I am originally from Fraserburgh but have been in Inverness for over 34 years now.

    I have had two Allo (donor) Stem Cell Transplants (SCT) the first in June 2014 with the second in Oct 2015 and here I am over 7 years out living as good a life as any 67 year old.

    In most cases SCT is seen as a vehicle to long term remission….. I have talked with folks who have had a SCT over 30 years ago and are still in remission living a great life.

    For me SCT was rather different - back in late 2013 my condition became aggressive (hit the link at the bottom of my post to see my complete story) and we had run out of treatments so some aggressive chemo, radiotherapy and Allo SCTs were seen as my last role of the dice…… and if it did not work that would be the end…….. but eventually after 2 years treatment and a long recovery, remission was achieved in Sep 2016….. so for me SCT was a no brainer.

    Yes SCT can be hard but on the whole, and more so for an Auto (own cells) SCT the recovery tends to be quicker and there is less chance of long lasting post SCT problems like GvHD where in an Allo SCT the recipients body does it’s best to kill the donor cells…… and this can result in life threatening side effects.

    Yes there is a period of time spent in the SCT unit but looking at the bigger picture of life…… this short challenge times is temporary.

    Family members will deal with it differently but it is all about the greater good. For us it was very hard work, as you will see in my profile my SCTs were done in the Beatson in Glasgow so my wife and I had to basically move to Glasgow for 4 weeks for my first Allo and 7 weeks for my second. We mists have done the A9 over 30 times with many over night stays attending clinics……. but we both look back now through fuzzy memories as life has moved on.

    Happy to chat more.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike ,thankyou for your reply , I appreciate your advice, I have a provisional date for harvest ,end of January.  Its good to have an objective voice in all if this .I'll keep in touch .

    Cakie

  • Hi. I am part way through  my 3rd cycle of treatment  for MM. I have an online appointment  regarding  a stem cell transplant   in Glasgow tomorrow  and I'm quite nervous.  I have been doing some reading and the risks involved  do scare me a bit, but I know that the treatment  will really make a difference  to me too.  How did you get on with your cell collection?

  • Hi Sunshine 

    I've had a tricky journey with my 4 cycles of treatment .As a result my Stem cell harvest has been delayed until March .. I've an apt  next Monday to talk things through with my consultant .I hope your apt tomorrow goes well. 

    Best wishes ,Cakie

    Cakie

  • Hi  and welcome across to this corner of the site.

    I had both my Allo (donour) Stem Cell Transplants (SCT) in The Beatson in Glasgow so know the team very well although the SCT Unit has been moved over to The Queen Elizabeth Hospital.

    As I could not be put into remission I had to go down the Allo SCT route but my brother came back as a perfect match so he went through the harvest for both my SCTs.

    He said the harvest was not a problem. A long sit for the two days as the machine did it's thing. He is a blood donor and he said it was like giving blood but it just took longer.

    Don't over think the process. SCT has been done for a very long time and these team are at the top of their game.

    The intal ‘Talk’ with the SCT teams is 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 I had the T-Shirt…… 

    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 team 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.

    Happy to answer any questions you have ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi  sorry to hear that things have been tricky but this can often happen but let's look for you to get this on track for March ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Cakie. Lovely to speak to you. I too have MM but fortunately am now in remission. I had 6 cycles of VTD followed by a stem cell harvest and transplant last August/September. 
    The harvest for me, was quite tough as I had to have a femoral line inserted (most people I think have their harvest through their arm which is more straightforward). It took 2 days to get the required amount of stem cells, this will be enough for 2 transplants. 
    I think the transplant team are obliged to inform you of all possible side effects of the treatment so it can feel quite overwhelming but I can honestly say it was nowhere near as bad as I envisaged. I appreciate that everyone’s experience is totally different and the decision whether to go forward can only be made by you and your family. If you need to ask any questions about the actual transplant, I am always about. I wish you the very best whatever you decide to do Xx

  • Hello Hoppo13

    Thank you for your kind message . I have had a very honest talk with my Specialist nurse who I have got to know well over the last few months .She has been very honest with me which is how I prefere these conversations to be . I'm so glad you are in remission and take my hat off to you for having 6 cycles of VTD .How are you feeling now post transplant? Are you able to resume a life that is normal you? Take care x 

    I

    Cakie

  • Hi Cakie. I am 4 months post transplant now and am starting to mix with people again. It has been a fairly challenging few months because you are open to all kinds of infections (nothing major) but I’m sure this will get better once my immune system becomes stronger. Please let me know how you are getting on and if you decide to go ahead with the SCT xx

  • Thank you Hoppo13, I shall let you know what I decide xx 

    Cakie