Going in for transplant

Hi again, yes I actually do think it’s more scare for the family than the person in the bed.

Do check out the link below that will take you to a thread where some thoughts were collected about getting ready for going into the SCT Unit.

Checklist for SCT Unit

Do you know that actual name of the conditioning he will be having to kill off his immune system?

((hugs))

Hi Mike, 

thanks for your reply. I understand it’s the standard FB2 combination. 

im just struggling with the balance of hope and faith and positivity against the stark warnings from the doctor on the reality of % risk vs survival.  Trying to silence the fear and I appreciate it’s not even me going through it. 

I just want to make sure he has everything should he want/need it to hand. The usual books/phone etc will go too. 

thanks again and I hope you are keeping well 

M 

I do ‘get’ your concerns.

Now over 5 1/2 years post my second Allo SCT my family and I seldom reflect back at our journey, as without a successful SCT I had 0% chance of survival but now over 4 years in remission..... not cured and never will be.... but actually in remission that took 17 tears to achieve.

Is he having a Donor SCT?

Hope and faith it will work out is all we have really, and of course the evidence that does through speaking to you ! 

Yes, donor, great match I’m told. Does that make a difference? 

thanks 

A ‘great’ match is good, my brother was my donor and he was a 10/10 match.

A good match sometimes reduces some of the cell rejection problems.... his body will see the donor cells as being an attack on the body so will do its best to reject them - this often results in Graft verses Host Disease (GvHD).

But for the first 100-ish days following his SCT he will be on a drug that suppresses his immune system (Cyclosporin - Immunosuppressant) not allowing it to attack the new cells, after about 100 days this drug is slowly reduced and his all new immune system will have a fight it’s corner with the remaining part of his immune system.

Cyclosporin is a horrible drug but it must be taken everyday and kept down inside him so any sickness issues do need to be worked out with his team.

During that 100 days lots of care needs to be taken with regards to protecting him from infection risks as his immune system is very low...... I was actually not allowed to see my newborn granddaughter for 3 months....”infection machines” she was described as 

Always around to help out and make the journey smoother 

((hugs))

Understanding donor stem cell transplant (allogeneic) - you can see the PDF here

GvHD information 

https://www.macmillan.org.uk/information-and-support/treating/stem-cell-and-bone-marrow-transplants/side-effects-of-allogeneic-donor-stem-cell-transplants/graft-versus-host-disease.html#20512

Thank you - he’s a 10/10 too so that’s good to hear. 

Should we expect everyday to be touch and go? 

thanks for your support, he goes in next week so I’ll be back in touch ! 

M 

Sorry for not getting back to you, we meet up with daughter and granddaughter for a walk and a tea and cake..... it was absolutely Baltic but good to see them.

So over my two Allo SCT, about 57 days in total I only had to very bad days resulting in being taken to ICU.... that was during my second SCT and it was due to having a bad heart reaction to the last chemo I ever had..... FB2 does not have this specific drug which is good, this put me on the back foot.... it was all precautionary and on reflection. never touch and go.

Fatigue can be massive as it’s the main way the body recovers so I could sleep on and off all day, day out, day in especially during my second Allo.

We live in Inverness and my SCT Unit was in Glasgow 4-5 hrs drive away so I was fortunate that my wife was staying in a family room on the ward.

But many days she just sat beside my bed and we never did talk as I just slept so not getting into the unit is not as big a problem as you may think.

We did use FaceTime a lot to connect with our two daughters and granddaughters as they were not allowed in and that was 4/5 years back.

SCT has come on leaps and bounds over the many years and the staff in these units are at the top of their game so nothing catches them out.... 

I have talked with many people who have been through SCT and on the whole the main challenges start once we get out of the unit as this is when infections, medical issues, GvHD all start to appear and it is normal to have a few hospital admissions in the first year or so.

Always around to answer questions x

Thank you Mike, just having that insight is reassuring, while I know it’s always an individual journey , the insight and perspective is invaluable at this point. I’m really feeling like it’s a cliff edge with nothing known beyond it. 

It’s a long road is all I know... 

thank you for caring about others and using your experience to help guide in the unknown. 

M 

Hi Learning21, 

as the mum of a younger patient than Mike, our lass came through with an unrelated donor in 2011, is doing ok but due to so much previous treatment needs immunoglobulin; but she self injects that weekly! And otherwise is really well! 

Im still around on site (was a previous CC) but am having to fight yet another cancer; husband has advanced kidney cancer with what seems like a very poor local renal team! 
Hugs xxx

Hi Moomy, 

thank you for taking the time to respond, you and you’re family are going through so much! This forum really opens ones eyes to the suffering of others and pulls the best of people to support each other. Thank you. 

hugs back to you