Allo stem cell transplant

Hi 

Thank you for sharing your experience. As I said i think last PET scan was all clear. On results from mri they decided to take biopsy well it was two in the end on my arm and just received results all clear. I will be chatting to lymphoma team next week about the next steps. I think they want me to do radiotherapy as an interim before my allo. 

I'm worried and scared about any.long term side effects from the allo. Can anyone offer me  positive reassurance on this? Overall throughout my treatments that weren't chemo I've been pretty alright including.car-t where you can have cyctocline release. I know you have to do some form of chemo before the allo which I'm really apprehensive about. What chemos did any of you have and how long for?

I really hope my husband will be able to stay with me in hospital. 

Alice x

Hi Alice, like all treatments each and every journey will be different. 

My story is long so hit Thehighlander to have a look.

But long story short I had two Allo’s and went into them both with active cancer cells as I was never in remission for the first 14 years.

For my first Allo I had a new treatment that did not use chemo, just 10 Radiotherapy sessions and some targeted Theropy fir a week and this looked like it had killed off my immune system but after 6 months it had failed.

My second Allo was a last roll of the dice as my team had told me my countdown clock was at about a year so they said it would need to be aggressive treatment to stand me a chance and it was.

I will not hide the fact I was rather ill following my second Allo....... but fast forward 4 years 9 months (3 years 9 months past my sell by date) I am doing great and most importantly in remission from a condition that in 1999 was told was incurable but treatable but I would never see remission from..... you get the smile.

I am as healthy as I have ever been in the past 21 years.

It is all about the end goal, the end results. Some people go through Allo, get into remission with little or no issues....... some unfortunately have various struggles.

We don’t hide that Allo SCT has its risks but it was just the same with your CAR-T

((hugs))

Hi Alice,

our lass tried to put off her allo for as long as she could, but it had taken years for the team (a fabulous one led by Professor John Radford, who we saw most of the time) to get her into remission, and John strongly advised the allo to hold the remission.

it isnt easy and like her auto, she did try to sleep a lot of the time (you don’t feel bad when you sleep, she says!) but staying in hospital for anything up to three months filled her with dread. In fact it was only a month because of a skin reaction to a drug used in a syringe driver, it caused an abscess which in the end needed to be lanced and drained; added a few days to her stay. 

Various units use differing drug combos as chemo to reduce your immune system, also depending on your previous history. Her team decided on Fludarabine, Campath and Melphalan, reduced doses of some, which made it a reduced intensity chemo regime. She also, of course, had the antirejection drug, ciclosporin, the dose of that is carefully calculated and adjusted according to regular blood tests.

Hugs xxx

Hi Alice,

I'm in total agreement with Mike - everyone's journey is different, and I think managing these journeys post-allo is sometimes an art as well as a science! 

My consultant was convinced I was in remission prior to the allo so he changed my regime to a lower intensity one at the last minute. I had mixed feelings because I didn't want to take half measures and risk doing it again further down the line, but in hindsight I'm pleased he made that decision. I had vincristine and two others. It was just for the few days prior to the actual transplant of cells but honestly I'd had so much chemo by that point I didn't really give it a second thought. 

In terms of long term effects, I'm only two years out so it's hard to say. After the transplant you should tell your team if anything feels different or is worrying you, even if it seems silly or embarrassing. Identifying things early is always best, and often they refer you to the relevant team to get a detailed assessment (I spent a lot of time with dermatology, for example). It can be frustrating when something feels insignificant to you but it entails more tests and more hospital time but it's all done with your health in mind. 

I'm having checkups every six months now and I'm happy not to have any active issues that require treatment. I make sure I have regular dental checkups - that's important after treatment of this nature. 

One other thing to add - I'm a woman and I'm on HRT now. If you haven't already, and it's relevant to you, it could be a good idea having a conversation about that beforehand.

I really enjoyed the camaraderie of being in haematology. You'll get to know others who have been through similar things, and you'll all face these hurdles together. 

You're not alone x

Hi again, yes the post SCT is full of bumps in the road but you just have to deal with each as it comes.

I was discharged in June 2018 - 2 3/4 years post Allo number 2 and 19 years after diagnosis so don’t see any of my team.

Their parting words were something like..... “Get on with your life and getting appointment letters just develops stress so you have our number if you need us but we hope that you die of old age”

We do have this ongoing thread Life after a SCT - A Survivor's Guide

And every SCT journey has Amusing stories from your SCT journey

Hi guys 

Thank you all. I spoke with the stem cell team this week. They said it's right time to go for donor stem cell and that I would need to come off the trial. I was asking about success rates and stupidly googled. Well really stupid idea. I was so distressed by one thing I've read and convinced this was it for me, been really rubbish day.

I spoke to specialist nurse and she advised to focus on whether the benefits outweigh the risks rather than a number as everyone is so individual. I guess you can't really put a blanket stat on it. Did anyone else ask for success rate on here?

I have potentially 3 matches 1 marker 9/10 and two 10/10. If I decide to go ahead it will happen.in about 6 weeks time and will possibly have radiotherapy before. They said it takes 6 weeks to fully flush the trial drug out my system. They also told me a few other.people from this trial have gone on to have a allo transplant. 

Take care

Alice x

Hi Alice,

it’s a daunting prospect but every year that goes by, the teams learn more about how best to get folk through allos, and honestly they are getting better at it all the time.

google is sadly full of scare stories, and often out of date too. Having that many potential matches sounds amazing, hope your team picks the best one for you. Daughter only had 2 matches and one was pregnant so they obviously couldn’t ask her. It was a German man from Berlin who agreed and gave her his cells. She now has a combination of DNA and his blood group. 

Use this time to get as fit and well as you can, eat healthily and get regular exercise....

Hugs xxx

Hi again Alice, good to hear that you have come to accept the plan to move this forward.

Google and Allo SCT is just not a good combination..... as mommy says, information is way out of date and always tilts on the negative side rather than the very high success rates.

You are a statistic of one so focus on you getting through this and out the other end and yes the question is often asked.

I didn’t ask my team, the head consultant basically said I had 0% chance of getting past a few years without SCT....... we never talked about this again but I am now 4 1/2 years past that alarm bell...... doing great.

I had 10 sessions (once a day) of Radiotherapy as part of my conditioning for my first Allo SCT. It may well be Total lymphoid irradiation (TLI)

We are here to walk this with you ((hugs))

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/bone-marrow-stem-cell-transplants/total-body-irradiation-tbi

Hi Alice,

It is such a horrible situation facing an allo, I remember it well and I’m really feeling for you. I agree with everything that Moomy and Mike have said, the medical teams are getting more knowledgeable about the procedure all the time, and statistics are largely pointless as you are one person, not 20%/30%/40% of a person. There is also very little point in reading an individual’s story on Google, for exactly the reason that everyone is an individual. At one point, I convinced myself that I was going to follow the same story as someone I had read who suffered with really bad GvHD. Ok, so I did get pretty bad GvHD, but I did myself so much psychological damage by imagining that I knew how my future would pan out. The truth is, none of us know what’s around the corner, we just have to have confidence in our decisions in the present and don’t look back.

For what it’s worth, I was told there was a 20% chance I wouldn’t make it to 12 months post SCT. It was incredibly daunting to hear that. But there are a lot of numbers flying around in cancer land and I find it best to lock them all away in a box and don’t let them have a moment more in your mind than they need to. 

Wishing you all the best Alice and please keep us posted as to how things go.

Greg

Thank you all. One of my donors is male my age and from israel. I got through the cart_t and that was probably just as risky as I could of ended up in intensive care. My nurse said to look to see how the benefits outweigh the risks. 

Im at the Marsden so in the best place in my opinion. They will be prepared for everything and do this procedure all the time.  I know the staff and was on the same stem cell ward for a few months last year so I know the set up, it helps that it is familar was much harder to go to a different hospital. I'm going to take my yoga mat in with me and practise when I can. I like the online maggies class.

I've been trying to.improve my fitness with yoga 4 times a week and a bit of walking early in the morning. I eat well with the occasional treat. 

Take care 

X