Hi all,
My dad was diagnosed with mantle cell in June and has just finished his 6 rounds of chemo, in preparation for a stem cell transplant at the end of January. Throughout we have been told that the stem cell would be the difference in relapsing in the next 2 years or relapsing in the next 10-15 years. No brainer for him.
He had his stem cell harvest on the 12th December, only to be called on the 18th by the stem cell consultant to be told they have had a turn around on this as there's been a recent big conference in America, and they now believe that there may not be as much benefit (for the trauma involved) as was first shown - only a 2% better chance of the cancer not coming back with a transplant after having had the current treatment.
He's had his post treatment scan yesterday and will be discussing if the transplant will go ahead or not on the 3rd Jan when they have results.
I guess I'm just a bit thrown by it. It's such new research (report released 10th December 2024) and he's already had the harvest done. A transplant is the go to treatment route and all the information out there (Macmillan/lymphoma action etc) back this up. I get it's the Christmas period so nothing would have been updated yet.
I guess I'm wondering if anyone else has experienced this turn around and might have more insight?
Unfortunately it's been hard for me to attend appointments with my parents.
Thank you!
Hi Lilypad01 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your dad.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Mantle cell lymphoma but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) …….
Eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well….. more so as I have had to have 2 Allo (donor) Stem Cell Transplants (long story) ….. June 2014 then Oct 2015 and I remain in remission to this day.
I also volunteer for Lymphoma Action and I have not heard anything about this report….. and know one has been talking about it.
How old is your dad?….. this can have a lot to do with the challenges of post SCT recovery and ongoing health issues so it balancing risk and benefit.
The recovery from SCT can at times be hard….. I recovered very quickly after my first Allo SCT but the recovery after my second Allo SCT was long and hard…… (See my story) but for me, Allo SCT was seen as a last throw of the dice and for me the results have been great and over the 9 years since my sr Ind SCT there have been a few new drugs come on line for my type of NHL so I now have a fall back.
I was a month away from my 60th birthday when I had my second SCT and have been left with some ongoing health issues…. but I am not complaining.
CAR-T is now being seen as a preference before SCT but each situation is seen on its own merits….. this ‘may, have been mentioned to your dad but may have missed it.
((hugs))
