Hi DerryGirl75 and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your mum.
I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 at 43 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’ may be different I most definitely appreciate the challenges of this journey rather well.
Your mum has done well to not have had treatment until now..... and I will say that when I was having my main chemo I was in a ward with patients in their mid 80s who did well on their treatment.
You need to try and find out your mum's exact type of Lymphoma ...... as there are over 60 types and sub-types of Lymphoma so knowing her exact type will helps us help you and your mum.
R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.
My great CNS (Cancer Nurse Specialist) initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.
I had the big brother of R-CHOP - R-EPOCH ( many of the drugs are similar) back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.
My main mass was in my neck and it was basically the size of a brick 21cm x 10cm x 6cm. By the time I went for my first blast of chemo 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 being restricted and the pain was off the scale.
I had an initial 15min blast of Vincristine and It was amazing the difference that first a Chemo blast made. Over that first night the staff kept coming into my room to look in my mouth as my teeth were slowly re-appearing to the point I actually had breakfast including toast that morning. A few days later I sat with the family and had some Christmas dinner and yes the pain started to reduce but I slowly had different pain as the muscles and nerves that were taped in the mass started to stretch in the new space......... but this was all still very do-able.
Getting ready for your treatment is important so do have a look at the link below as it is a collection of top tips from people who have been through treatment.
Top tips for the day of your chemotherapy
My story is rather complicated See my story as I had to go onto have significant treatments mainly due to me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am over 9 years out from my last treatment, I turn 70 this year and I doing great.
Any questions just ask ((hugs))
