Hey Everyone,
I’m reaching out for some support & knowledge/experiences please.
I had 2 x AVBD and 4 x EscBEACOPP for stage 4 classical Hodgkin’s lymphoma. I still have residue disease in my mediastinal mass, so I’m classed as refractory. So disappointed and started to feel unwell again, feels like we are back where we started in January. All that treatment and now more.
I'm due to start GDP on Monday with a view to get remission and then the stem cell transplant process. Scary stuff and the isolation away from my 3 year old is so painful. Also the consultant said GDP may work, about 50% chance. That didn’t give me much positivity to be honest!
have any of you had stem cell transplant and offer any insights or advice please?
Thankyou
Hi ManifestingPositivity and sorry to hear about your HL being refractory…….
As you may remember I have/had two types of rare T-Cell Non Hodgkins Lymphomas….. one is incurable the other ‘may’ have been cured.
My main chemo was always intended to open the door for me to go through Allo (donor) Stem Cell Transplant (SCT)……. I actually ended up having 2 Allo SCTs (it’s a long story)….. my second Allo SCT was in Oct 2015 and I remain in remission to this day.
Have they mentioned what type of SCT?….. is it an Auto SCT using your own clean Stem Cells or an Allo SCT using Stem Cells from a matched donor?…..
You may want to check 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 regular Support Platforms. I highly recommend these groups as there is nothing better than ‘talking’ with others who have walked or are walking the same journey.
Lymphoma Action have once again asked me to run an online SCT specific focus group on Tuesday 15th Oct 11.00 to 12.00 where folks will have an opportunity to get there questions answered.
They also have a great Buddy Service where you can be linked up with someone who has walked the SCT journey…… I am one of the SCT Buddy
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.
So an Auto SCT has less post process challenges and 'tends’ to mean a slightly less time in hospital.
You are hearing about the SCT focus group before it’s officially on the LA website and FB page…… so keep an eye on LA sites…….. but I will leave your thread in my email in-box and I will come back t
you once the information goes live……. There are a few folks who have HL…… who have been through Auto SCT in the Lymohoma Action FB group
These are a few links you will find helpful.
Hi again, the link below will take you to the information you need for the Special Focus meeting.
Please register here lymphoma-action.org.uk/.../special-focus-support-meeting-stem-cell-transplants
