Hi all
my beautiful 14 year old boy was diagnosed with ALCL in December 2024. He had 6 months of chemo which took him into remission after round 2. 3 weeks after finishing he relapsed and is now in the path of immunotherapy followed by stem cell transplant. Has anyone else been on this treatment plan. Hope to hear from you all.
Hi Sandra P and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your son.
I am Mike and I help out around our various Lymphoma groups.
I don’t have Anaplastic large cell lymphoma (ALCL) but for some context I was diagnosed way back in 1999 at 44 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.
Especially as I have also been through 2 Allograft (donor) Stem Cell Transplants……. (June 2014 then Oct 2015) but I am now 9 years 8 months out from my last treatment and doing great.
Lets see if there are any parents in the same position on the group
Are you in the UK Sandra?
Yes my journey has been 25+ years long and complicated due to having 2 rare types T-Cell NHL (See my story) but like many Lymphoma journeys there are many many positive stories.
As you are in the UK you can widen your support base by checking out Lymphoma Action.
Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.
They run various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…….. there are over 5500 members in their online support group with a good number of parents who have supported youngsters through their Lymphoma journeys
They also have a great Buddy Service where you can be linked up with someone who has walked the same treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
