Hi Guys,
I’d like like some advice or some reassurance I suppose.
My mum was originally diagnosed with large B cell follicular lymphoma. She had chemotherapy and had stem cell treatment using her own stem cells.
It’s been 6 months since the end of her treatment and her cancer didn’t fully go in her neck. She went for a pet scan and found out this week that her Hodgkin’s lymphoma is back in her neck and she has a small one in her chest again.
Her doctors have said that they’ll be using a combination of different chemotherapy drugs and will hopefully be getting it into remission to then have another stem cell treatment using a donor.
Does anyone have any experience using donor stem cells and how this worked? And what the success rates are of using a donors.
It just feels like a kick in the teeth when my mum has worked so hard and been through hell and back to have to go through it all again and as a family we are extremely worried about what lies ahead for my mum and whether this treatment will work or it’s a possibility that we lose her
Hi again Gothgirl98 and sorry to hear about your mum…… I am just going out for the evening but as an encouragement you may want to have a look at…..My cancer story
Long story short - when my condition became aggressive in late 2013 I could not have an Auto SCT using my own cells as I could not be put into remission so I went in to have 2 Allo (donor) SCTs….
I am 9 years out from my second Allo SCT, I turn 69 next week and I am living a great life.
Do list your questions and I will get back to you when I get home ((hugs))
Hi Gothgirl98 she most likely would only get one go at Allo SCT….. especially as she has already been through an Auto SCT.
I did have my brother’s cells for both my Allo SCTs…… My first Allo SCT was done using a rather new conditioning (trial) treatment specific for my types of my T-Cell NHLs and there was always a chance that it would not work….. but we had a plan to do 2.
Remember that I was being treated for a Low-Grade and a High-Grade at the same time…… but in reality this did not make a lot of difference to what was done abd the outcome.
Allo SCT was seen as my last roll of the dice….. but in the last few years a few new treatments have come along that should I relapse I now have a fall back….. and there are other trials out there.
I was a month from my 60th birthday when I had my second Allo SCT….. there was a man in the SCT unit at the same time as me and he was in his mid 7Os and still see him getting on with life 9 years on……
The only way forward is HOPE and over our 25 years on this journey my family and I Have Only Positive Expectations ((hugs))
Good morning Gothgirl98 ....... I see that you have put up a post to our nurse team, they will get back to you, but it often takes a few working days.
I never asked - what 'Exact' type of Lymphoma does your mum have?
If you have looked through any other Lymphoma discussion threads on the Community you may have seen I often highlight 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.
On this journey 'talking' is very important, so LA do run various Support Platforms.
I highly recommend these platforms as this would widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same Lymphoma journey both as a patients (your mum) and indeed yourself.
They also have a great Buddy Service where people can be linked up with someone who has walked the same journey. There are buddies for Caregivers and also Patients........ and should your mum go down SCT route she may even bump into me as I am a SCT buddy.
Lymphoma Action also have helpline, it 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 ((hugs))
