Introduction

Afternoon Bendorain , I'm Jean (Gypsy rover)  please to meet you , Although it's sad when we or someone joins , I was diagnosed with non Hodgkin's lymphoma , High grade B cell , which turned out to be Burkitt's lymphoma. I wasn't on your chemo regime , I was put on RCODOX  MI/VAC. Rituximab was one of them another one was Methotrexate  , I to lost my taste buds , don't worry as they will come back , I also had mouth ulcers despite using moth washes 4times a day , was that sore I could only eat ice cream and yoghurts.. constipation wasn't one of them I was the reverse , I've never visited a toilet as often in my life , 1st cycle I was hooked up to my chemo for 13 days , I ended up naming my Chemo trolley Metal Mickey , where I went he went , my pal for 14 weeks , I also have chemo fog - brain fog - where you can't remember things or you say something and you stop mid sentence , neuropathy in my hands , tingling numbness , if you get any symptoms different tell your nursing staff , I had several bouts of sepsis and a rigor episode which was intense and 2 injections of pethadine to calm the shakes down as my temperature had spiked to 40.2 , I wish you well on your chemo journey , stay in touch were a fab group

Hi again bendorain and well done navigating across to the group. Do you know the exact type of NHL you have as this helps you connect better with others.

As I said in your first post I have been on my journey for over 22 years with a rare incurable T-Cell NHL but I am still here doing great.

I had a rather different treatment journey (hit my name to see my profile) so had a cousin of R-CHOP……. my R-EPOCH had me in hospital for 6 days for each of my 6 treatment cycles.

I actually did ok during my chemo. 

The treatment information you are given to read can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all are bad. If we asked 10 people with the same condition who had the same treatment you would get 10 different answers.

These are some useful links for you to have a look at. I felt sick at times but never was sick. Do remember not to suffer Nausea in silence, when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

My Fatigue built up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

Avoiding Infections obviously is very important but you will totally get this during these challenging times.

I would also highlight the importance of drinking lots of water so the aim is 2 litres a day every day as this will flush out all the toxins released by the chemo, protects your kidneys and keeps you hydrated.

As for the 'sucking on an old penny taste'...... it's not great. Eating fresh pineapple helped me, others say freezing small chunks of pineapple and sucking on them helped and I always had a pack of boiled sweets like Werther's Werther's at hand. Strong flavoured foods help - some say having a curry helps....... I could not face them.

You may also want check out the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Regional Lymphoma Online Support Groups and a great Lymphoma Buddy Service where people can be linked up with someone who has walked the same treatment journey.

We are here to help you navigate this journey.

Hi Jean, thank you for your message. Hope you are doing well now after facing so much! I've certainly been grateful for ice cream and yogurts, as they are among the few things I get some taste sensation from right now! 

It was described to me initially as "thyroid lymphoma", which doesn't seem to be a category in itself here. I've also saved the Lymphoma Action site and will study it in more detail. As you say, the side effects lists look daunting, and it is human nature to see lists like that and begin to believe we have most or all of them! 

Hi Bendorain , To me the got to guy is Mike and I see you have already met him , Chemo is a nasty bug , people just don't get it , chemo itself , then the side effects then after or late effects , after chemo and your in remission people think that's you , you're cured and fine so get on with it , I'm struggling from neuropathy and a weird sensation in my right leg , Consultant thinks it's nerve damage, might , might not go , waiting game.. but anything that your unsure of ask your medical team as they know you're medical history , but we're here for I'd say a chat or letting off steam , I went off chocolate , mince , Pepsi max , fizzy drinks , my nursing team were amazing , couldn't as for a more dedicated team , just stay positive , think happy thoughts , I thought on my 2 son's and that got me here , but if you have an off day or off days it's fine , even people without cancer has off days , so to me we're more than entitled to them , look forward to chatting to you , take care , keep safe and well

Thanks Jean. No doubt there will be good and bad days. You stay safe and well too! 

Hi again, does MALT lymphoma (non-gastric) NHL sound familiar?

I haven't seen this term before, so thank you for sharing. There was some suggestion of an autoimmune condition being a factor at the outset, but this was superseded by the biopsy-based diagnosis and the fact that my condition seemed quite aggressive from the start. I'm learning a lot since joining today so thanks, Mike and all, for your comments.