Hello. My partner was diagnosed with NH HG T CELL three weeks ago and yesterday the oncologist confirmed it to be Angioimmunoblastic TCell type.
After reading so much info it seems to be a rare one. If we weren't absolutely devastated and terrified before, we most definitely are now.
His CHOP treatment starts next week.
I'm hoping to get some positive stories and feedback from anyone who has been on the journey with this particular type.
Many thanks in advance for any tips, strategies, anecdotes, or info. Love and hugs to all on this life changing journey x
Hi again Lor 2023 and well done navigating across to this corner of the community.
When a loved one receives a cancer diagnosis the mind goes into over drive, especially when it’s a type of cancer that we don’t hear much about. But Lymphoma is the 5th most common cancer in the UK (after breast, lung, colon and prostate cancers) so this brings the advantage of lots of research and treatments.
Like my very rare type of Cutaneous T-Cell NHL (CTCL) your partners Angioimmunoblastic T-Cell NHL (AITL) is one of a number of rare types of Low-grade non-Hodgkin lymphoma
Low grade NHL are often seen as life long conditions but are still treatable when required.
As I said in your first post in the New to Community I was diagnosed back in 1999 at 42 with my type…. eventually reaching stage 4 in late 2013. I have had treatment on and off over the first 16 years but I am now over 8 years out from my last treatment, turned 67 last Nov and doing great…… this is a testament to the ongoing development of treatments.
CHOP is a very effective treatment which consists of:
I had a different regime R-EPOCH but had some of the same drugs and honestly did ok with it all.
By the time I went for my first Chemotherapy Treatment it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner.
I remember the nurse team on night shift kept coming into see me as they were astonished at the speed the treatment worked and within a few hours my gums had went back to normal, my breathing had improved and even had tea and toast….. I say all this as an environment - this can be treated.
This link Top Tips for the day of your Chemotherapy will help you understand what people found helpful when having treatment. My understanding is that CHOP is given as a day patient although the first day often is longer…… my treatment was over 5 nights/6 days for each of my 6 cycles.
There have been a few group members with AITL over the years so let’s see if they are still looking in.
Watch where you go for information, can I recommend that you stick to the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma charity and all the links I have put in this post is from their site.
Always around to chat and answer questions as best as I can ((hugs))
Hi again Lor 2023 do call my Mike.
Side Effects of Treatments can come along but don’t be sitting around looking for them as they may not appear.
During Chemotherapy Treatment everyone reacts ever so differently. I had over 750hrs of very strong chemo spread over my 6 x 6 day/5 night cycles and honestly I did ok. I had the big brother of CHOP so had most of the dame drugs….. with the addition of other drugs.
I lost my hair within about 10 of starting my treatment so I shaved it all off asap as it was not great dealing up with hair in my mouth.
Nausea may be a challenge, but remember she must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at time it is trial and error to get the right one. I was only sick 2 times during my treatment and that was down to bad food choices…. at times I did feel nauseous but this was normally when taking medications so top tip - take meds with carbonated water.
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less he does the longer the recovery. As it’s the summer get him out walking and remember his needs to be sun safe…… factor 50 and a hat
There is a real Risk of infection so care needs to be taken to control infection contacts.
Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest…… then your body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely
I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects the kidneys.
I think I have just seen you ask the same question on the Lymphoma Action Group 
((hugs))
