First Stem cell transplant- advice wanted

Hi MrsD87 I am Mike and I help out around our various Blood Cancer groups. 

I don’t have Myeloma but I have been on my journey for over 25 years with 2 types of rare Non Hodgkin’s Lymphomas.... and this journey included 2 Allo (donour) Stem Cell Transplants (SCT).... the first in June 2013 with the second in Oct 2015 and I remain in remission to this day.

Preparing for going through the time in the SCT Unit is important so this long running post in our general Stem Cell Transplant support group is a place where community members have collected the things that helped them go through there time in the SCT unit - Checklist for SCT Unit

SCT is the same regardless the blood cancer type...... so although this second link is taken from the Lymphoma Action website it has some good first hand tips for the SCT process Top tips for stem cell transplants

You can have a look at my profile (hit my community name) as I have detailed my journey..... but as I had 2 Allo SCTs the journey is complicated.

Is it an Auto SCT using your own Stem Cells or an Allo (donour) SCT?

Do you know the name of the conditioning treatment they are using to kill off your bone marrow?

Hi

Thank you for your reply.

It's auto SCT, I had my harvest done in December.

It says on my information high-dose melphalan. I am on a trial so have had 12 weeks of chemotherapy already and extra bone marrow biopsies.

I'm only 37 so just hoping for remission for as long as possible after this initial treatment.

Hi again MrsD87 I had Melphalan as part of my conditioning for my second Allo SCT.

I received the Melphalan as part of my FluMelAlem30 and it was put in the day before I got my donor stem cells.

Melphalan is a type of chemotherapy that is actually very closely derived from Nitrogen Mustard Gas!!!…. yes think WW1..... so it is very strong but it has to be..... as this is being used to do the final clean out of your bone marrow in preparation for your all new immune system to grow in.

So 30mins before the start of the Melphalan 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 Melphalan infusion that took about 30-40mins then was told to keep going for a further 30mins after.

I lost count the ice lollies I had.......... and developed the mother of all freeze brains every...... hence the Paracetamol.

Over the years I have talked 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.

The two weeks leading up to the M and all the way through until I got out of the unit I was using a two pack oral mouth rinse called Caphosol.

So I set my phone for every 3 hours to make sure that I was doing this all day.

My head consultant said that the Caphosol was rather expensive but if I used it correctly it would save me a lot of mouth pain and having to be on other drugs to overcome any bad mucositis. I did well with only one very small area developing and it was not a problem.

But whatever type of mouth care they give to to use, use it EVERY day as it does help.

Hi MrsD87

It's good to meet you on the group chat . You are really going through a roller coaster ride at the moment. 

I had a SCt April 23 and have not had regrets although it took me a while to come to terms with it . Everyone has their own experience .It's not easy but there is so much help with the staff that work in the units..don't hold back tell them how you are feeling and they will most likely have advise and support .

I had the same contioning treatment that you will get . Every one told ne it would upset my tum and it did! Disposable undies are invaluable! Also the airflow systems in the room was chilly .A couple of fleeces with full zips are handy as you are likely to be hooked up to IV alot of the time. 

You will get through this x I really understand you will miss you son . I found Macmillan a great support when I came out of hospital and needed to chat . Wishing you all the best and always here to chat 

Sue x 

Hi    this is Kevin  AKA  Vespa,    i am now   11 months post SCT   so  all still fresh in my mind,       i am mature  male,   father of   4,    first     sorry that you are   here going through this with a young family,     support of the ones close to you is and will be very  important to you on  this Journey,     i had mine in Birmingham  QE 2 hospital,   after the  4  cycles of DVTB     and then Stem cell harvest     with a   few delays for bed spaces,    but   the process it  self   was not painful,     i had a PICC line installed,     before the  SCT    the chemo  dose,   Melphalam   was  the most daunting for me,  but in fact     i did not  really know it  was in my body,   the  next day the SCT  took place in my hospital bed,    and   the staff  were amazing   explaining  everything to me,     OK   the  warts and all bit now!     The recovery  is not easy,    no energy,   no appetite,    and     diarrhoea,      i hoped to read  a lot,  but i could not focus on anything at all,      i was in for 10 days,    and  my wife brought me  foods and drinks that you   dont get  in hospital,    fresh fruits,    cold drinks        i also   did catch a stomach bug,   which i was warned would happen,      every day gets better,      and the recovery starts at home,   you will need support,        i was very determined to  walk a bit  every day,  even in isolation in my room,   i paced myself   and   made sure i showered everyday,   as hard as it was,              please do not be fearful,  the results are worth it,       i am  in REmmision   and    doing lots  of things,     cut the grass,   walk the dog etc,     Best wishes     Kevin 

I will be getting ice lolly's, apparently rocket lolly's  

Thank you for all your advise.

Thank you