Hi all
I’ve just joined this wonderfully informative site and wondered if anyone could help?
I was diagnosed with NHL last August, had a course of Rituximab in the Autumn which didn’t work and then found the cancer had progressed to high grade.
I started R-CHOP chemo in February (Rituximab, cyclophosphamide, doxorubicin, vincristine and Prednisolone) and the first cycle caused blood in my urine, which led to a course of Mesna tablets (specific medication for blood in the urine/bladder protection). Days later, I developed severe diarrhoea which lasted for 14 days and pushed back my second cycle. The diarrhoea/colitis was attributed to the Rituximab and it was decided to remove that component from the chemo.
After round 2 of chemo, I again had haematuric cystitis which necessitated Mesna and antibiotics. Following round 3 last week, I’m now in hospital facing a 5th day - I was admitted with blood in urine and a high temperature and have been told that I might have kidney damage - which, as with the Rituximab/colitis, is a rare potential side effect. My consultant is now considering stopping chemo altogether and going straight to radiation (following a PET scan). I’d be really interested to know if anyone had experienced similar? Either the kidney damage or the Rituximab induced colitis?
Thanks very much in advance.
Smoo
Hi again MissSmoo and well done navigating across to our little corner of the site.
For some context 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.
What type of NHLs do you have?……. FL transformed to DLBCL?
I had a lot of chemo during my man treatment Late 2013 to Late 2015 (See my story) but I was fortunate not to have any Kidney issues.
We have had a few folks pass through the group who have had Kidney challenges so let’s see if they are still looking in.
Always around to chat ((hugs))
Hi MissSmoo ….. no need to apologise…… I am just glad that you are home.
Consultants 
…… over my 25+ years I have had a good number of consultants and thankfully only 2 were something the same as your consultant at the start….
Coming from a teaching background (my wife was also a teacher) we need information as it helps control the noise from building between the ears and arms us to get through this with as little stress as possible 
So when we took our note book out with the questions we wanted answers for…… these 2 consultant rolled their eyes……
But we just sat there until they ‘got’ that we were not moving until we had the information.
One Consultant actually said “so you are one of those who want all the information people….? “
My wife’s reply (this caught the Consultant off guard) was something like “…..if you were in my shoes and had no medical training and my husbands life was on the line I rather think that you would be doing the exact same….. (pause) this is your job…… but this is my husband’s life……. then she asked our first question…… and we got on fine from there……. and actually he was very good at his job.
Our great CNS (Cancer Nurse Specialist) of many years was in the room at that first meeting and she was stifling a giggle during this conversation.
She said after that meeting that we had been the first couple she had seen challenge this person and was pleased that someone had.
We have always found our CNS to be the best person to get common sense answers from.
So what is the next step in the journey?
