Hi there,
My mum has aggressive B Cell NHL. It was intially diagnosed as stage 3, she had one cycle of RCHOP in hospital and then was discharge home.
She was home for a week when she started to become breathless again, and having pain. She was re-admitted and rescanned and they found that she hand to responded to RCHOP and that the cancer had actually progressed to stage 4.
Yesterday she began RICE via infusion. However today they have stopped as she is in severe pain and unable to breathe.
I'm wondering if anyone else has experienced pain at the tumour site when receiving chemotherapy? Online it says that chemotherapy isn't usually painful apart from at the injection/IV site.
I'm also wondering if anyone else has experience RCHOP not working and trying RICE instead?
The breathing issues are due to fluid retention, so the chemo has now stopped while they focus on trying to remove fluid.
Thanks in advance
Hi Dredge and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have B Cell NHL but was diagnosed in 1999 with a rare, incurable but treatable type of T Cell NHL going through all the Stage up to and including Stage 4a so although my Lymphoma ‘type’ is different I know this journey rather well.
It sounds like your mum is having a challenging time. R-CHOP is the initial ‘go to’ treatment for a lot of NHLs but it sounds like her presentation is particularly aggressive so RICE is one of a number of ‘next line’ treatments…… and yes this happen in a good few cases so let’s see her team navigate her though this.
Fluid retention is also common during these treatments but they have ways of fixing this.
Yes you are correct, the actual process of putting the chemo in is not normally painful although I have had some infusions escape from my lines in my skin. But the pain at/in her tumour site can indeed be normal.
The chemo is designed to break down, melt away the tumour mass but it also attacks healthy cells around the tumour.
If her tumour mass was anything like my main tumour in my neck (hit my community name for my profile) it had incased nerves and muscles so as the mass started to reduce the nerves and muscles started to stretch in their new found freedoms……. the pain from this was off the scale so I was on some very strong pain meds to counteract this but even then I was still in very bad pain.
I see you had posted in the Carers Group about accessing support and I see you were signposted to Local Macmillan Support and Maggie's Centre
At this point I always highlight the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos.
They run regular Regional Lymphoma Online Support Groups for both patients and Carers and a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
I am actually on my way home from holiday but am always around to help out as best as so can.
