Hi diagnosed with Diffuse Large B Cell lymphoma

Hi Joolz and welcome to the group, I had dlbc stage 4B back in 2009 and had 8 rounds of rchop. I did find as treatment progressed the effects did to and always remember saying to friends and family after after the first round - if they are all like this it will be a walk in the park- 

That was not the case but it is do-able and if you keep a positive mindset and do what you can to counter the effects then you will cope better. Any questions just ask

John 

Hi joolz, be great to share experiences. I was diagnosed officially Friday after being ill for 3 months and am at stage 3/4. I start rituximab chemo today but will be going on to chop later in my treatment. Its great to have this forum to chat with people.

Hi Joolz R and Erictheviking and a warm welcome to the NHL group. I am Mike and I help out around our various Lymohoma groups.

My Cutaneous T-Cell NHL is on the rare side and followed a rather different treatment journey but when it comes to DLBCL my good ground johnr knows this journey very well.

R-CHOP is a very effective treatment providing great results. I had a dig brother of R-CHOP and my R-EPOCH had me in hospital for 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs for each of my 6 cycles…… and I have to be honest and say I did not have much problems. Yes the Fatigue built up over time but this is manageable and do remember it’s also temporary.

For good reliable information on all things Lymohoma do 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 provide various Support Platforms.

We are always around to chat and answer questions as best as we can.

Hi John

what side effects did you have - I was hoping to sail through it

Hi Eric

we’ll have to exchange notes - currently I feel fab but worried about further treatments not being so positive x

I've been very good at keeping a diary. If I'm not upto it after chemo today I'll message you tomorrow/ Wednesday with how it went. I'm quite positive but there's always going to be some anxiety. It just seems so different for everyone you can't base it on other people's experiences. 

Good luck with your chemo today x

Hi Joolz  I was diagnosed with DLBC in  March this year and had my 3rd round of R CHOP last Friday.  So far so good.  Only real problems are a few days of extreme tiredness, not so much the days straight after because the steroids keep me lively but for a couple of days after the steroids finish and rather randomly the first 2 days of my 3rd week.  I did get a sore mouth after round 2.  Have lost all my hair but still got my eyebrows and eyelashes.  No major problems so far but a rather doom and gloom nurse told me on Friday that things get worse after the 4th, everything starts to taste metallic and the tiredness gets worse.  The thing is I am a very positive person who tries to deal with things as they happen.  I didn't really need her to 'rain on my parade' lol.  If things start tasting metallic then so be it ;-).  (she says but will probably moan like anything if they do ..... )  I walk for around 40 minutes a day, tired or not and drink water like its going out of fashion.  If you have any questions please feel free to ask.

Hi Smoochie, you sound to be doing great. I did have the metallic taste for a few days after my first treatment and my wee smelt of chemicals but other than that no issues. Avoided alcohol for 8 days after treatment but had some Prosecco yesterday and it was lovely with no side effects

we certainly do not need negative nurses and maybe a metallic mouth will help me get a few lbs off. I still have my hair but have had it cropped really short to lessen the impact. Really looking forrd to not having to shave my legs and pluck my chin

keep in touch- it’s good to hear from someone who’s ahead of me.

we can bear this xxx

Meant Beat not bear