Hi all looking for advice I’ve had one lot of r chop chemo and I noticed the swelling on my face going down but now as it’s gone down I’ve noticed it’s all bumpy with large lumps has anyone else experienced this I’m struggling as it went down ok no issues now it’s gone lumpy I’m in a bit of pain. I’m seeing my consultant tomorrow so I will ask
Hi Andydjand a warm welcome to the Community and sorry to hear you are on the Lymphoma rollercoaster.
I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but I have been on my Lymphoma journey for coming up to 26 years first diagnosed way back in 1999 at 44…… when my first rare (8 in a million) ‘incurable’ but treatable type of slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL).
I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of very aggressive High-Grade Peripheral T-Cell NHL was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
What you are experiencing is rather normal but do indeed talk it through with your consultant.
I had the big brother of R-CHOP - R-EPOCH back in late Dec 2013 to April 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........
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 (Oncovin) 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 trapped in the mass started to stretch in the new space.
My skin looked odd and changed shape and texture all through the treatment but it came ok once I was out the other side of treatment.
I see you have put a se ind post in the practical issues group and I will reply to that one in there.
Always around to chat.
