Hi,
Thank you for letting us join.
I am Gene’s spouse and we have a question for the group.
Has anyone that’s been diagnosed with Non Hodgkin B cell lymphoma had a tumor around their spine also experience terrible stomach pain continually? It’s excruciating when he stands and is really tight while sitting. We can’t find a doctor that can figure this out and my husband is suffering so bad. It’s been going on for a year when he was first diagnosed.
This has been so hard.
Thank you for your time!
Hi Papa and a warm welcome to the Macmillan Community but I am sorry to hear about your husband’s diagnosis and the challenges he is having.
I am Mike and I help out around our various Lymphoma groups.
There are a number of types of B-Cell Lymphoma….. do you know his exact type?
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 slow growing Low-Grade Cutaneous T-Cell Non Hodgkin’s Lymphoma (NHL) was found.
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 having had over 750hrs of chemo, 45 radiotherapy zaps and 2 Allogenic (donor) Stem Cell Transplants between Oct 2013 and Oct 2015.
Lymphoma can basically turn up on/in any part of the body….. has your husband had any treatment over the past year?
Thanks for this….. this information may help others to reply to you.
My journey was rather different. In late 2013 my main brick sized mass was in my neck and had enclosed around muscles and nerves….. the pain was off the scale leading up to and during treatments…… I was left with permanent nerve and muscle damage in my neck…….. it took years and a lot of physiotherapy to overcome some of the pain…… although during the winter when I am less active the pain is at its worst but the summer tends to be better.
Could he have nerve damage in his spine?…… has any scans showed anything?…… has he been seen by an orthopaedic consultant?…..
Post my second SCT in Oct 2015 I had significant stomach issues and also developed a big Hiatus Hernia…… it’s so big that it actually fully encloses around my stomach and pancreas gland….. it took a while to get this under control with PPIs (Proton Pump Inhibitors) Lansoprazole…..
