I have just found out about this community forum. My mum has T-Cell Lymphoma stage 3 - we are waiting for treatment to start. I am trying to keep my mum in the best spirits possible but am struggling to find ways and unsure what to do to help her. I don't want her to feel this depressed. Does anyone have any advice?
She has been told that she will be receiving 6 rounds of old fashioned chemo and then possibly a bone marrow transplant. She is really depressed and not leaving bed much since the appointment. She has been told she will start treatment within next couple of weeks
Hi again Cazurely and well done navigating across to the group.
There are a few different Types of T-cell lymphoma….. do you know the EXACT type she has?…… if we know this information we can help better as different types can have different treatments.
As I said in your first post I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell (Mycosis Fungodes) then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell -NOS (Not Otherwise Specified) NHL came along taking me to stage 4……. but this was all very treatable.
My story is rather complicated See my story…… as I also had 2 Allo (donor) Stem Cell Transplants (the old term Bone Marrow Transplant is still used)
How old is your mum?
Do you know the ‘EXACT’ name of the chemo….. I had 6 cycles of R-EPOCH….. but I also had many other treatments as well.
Do ask your questions and we will do our best to reassure you that this can be treated.
Good morning Cazurely
So your mum’s angioimmunoblastic T-cell lymphoma (AITL) like my 2 types of T-Cell is on the rare side…… but are still eminently treatable.
CHOP is a long standing (you could indeed say old fashioned) very effective regime…..but it still does what it says on the tin….. I had a few of the same drugs in my R-EPOCH that is the big brother of CHOP.
Her treatment will most likely be as a day outpatient with the addition of some other drugs to take at home including steroids.
My R-EPOCH was full on as I had to be in hospital 5 nights/6 days on my 2 IV pumps 24/7 for 120hrs for my 6 cycles….. and honestly I had no real side effects….. I was 59 years old then.
I have talked with people in their mid to late 70s who have had CHOP and I see them getting on with life years on.
She most certainly is sill trying to get her head round the word cancer……
Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers) so lots of treatments are available….
When I was first diagnosed our daughters were 14 and 18……but we went on to see our daughters graduate, get married, set up very successful businesses and provide us with 4 beautiful granddaughters….. I turn 69 in a few weeks and as a family we celebrated 9 years since my last treatment, I am living a great life and we continue to look forward to what else life has in store first us to enjoy.
These links will be helpful…
Top tips for family, friends and carers
Top tips for the day of your chemotherapy
All the links I put up are taken from the Lymphoma Action website.
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.
They also have a great Buddy Service where people 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.
You can read out ‘some’ of my story to her….. but my position was rather different so you may not want read out all my story….. this can be treated…. with great results.
The one very important thing she has to do is get out of bed and keep active…. the more active she is going into treatment the better she will deal with the treatment and her post treatment recovery will be quicker and she can get back to living life.
There are signs everywhere in my local Heamatology wards and clinic saying a week in bed is like ageing physically by 10 years…… I was turning 60 at my second Stem Cell Transplant but had a few issues so ended up in bed a long time so I left the unit with the body of a 90 year old in a wheelchair.
Any specific questions please do ask them ((hugs))
ps - I am on holiday so my not get back to your as quick as I normally do 
