Not posted in a while.
20 year old daughter NHL
6 x RCHP - partial remission
3 x R-IGEV - remission
set for Auto SCT December 2019
day before admission for transplant CT scan showed relapse so everything put on hold.
January 2020 - referees to Manchester for CAR-T
March 2020 - CAR-T therapy compleyed
day 30 - CMR
day around 80 daughter finds lump on neck.
needle biopsy and more invasive biopsy results are in inclusive so we are going in for entire lymph node removal this week as they cannot determine the subtype.
theyve said as the scan showed something suspect isolated to neck area they plan to radiotherapy this area then straight into Auto SCT as her cells are still in freezer.
im concerned how will these cells be ok if she relapsed shortly after?
Auto SCT have 40% success rate
Allo SCT 60% but 25% mortality so doctor says to take the 25% off and they’re the same 40%.
my concern is to put my daughter through all that conditioning chemo and transplant and then having to go for Allo anyway.
so confused and it’s so difficult to get to see consultant face to face due to COVID. Our CNS is amazing though which I’m grateful for.
sorry for long post
Ruth x
Hi Ruth oh it is a rollercoaster and never apologise for long posts.
First the statistics are just that, a look across the nation, but everyone is a statistic of 1 so don’t focus on them.
I was told I had 0% chance of living past a few years and SCT would hopefully give me a lifeline and it has and more.
An Auto was not an option for me as I had never been in any remission for the 15 years leading up to SCT.
Having an Auto is significantly less dangerous, there is no GvHD and recovery is smother and for a lot of people this is all that is needed..... and if required, an Allo SCT could be a plan B.
My plan A and B were two Allo’s with the first following a new conditioning that did not use chemo but Radiotherapy and a targeted therapy, but it failed so we had to take the big guns out for the final roll of the dice.
Her cells will have been tested before freezing so contamination will not be an issue.
It’s good that you have a supportive CNS as this will help a lot during these challenging times.
You just can’t control the medical side of this, that’s where you have to put your full trust in the medical teams to do the best they can with the tools that are available...... your job is to control the battle between your ears as best as you can and focus on the greater good that treatment will bring ((hugs))
I did remember you Ruth and we are always around to help out at any time.
My main core biopsy was also done under a general as there was a main artery and a lot of nerves surrounded by my mass so it was safer to use a general - she will be fine.
Once this has been through pathology a clearer picture will be available and a definitive plan put together.
We always say “expect the unexpected“ as until something actually starts it’s all a guess.
((hugs))
