49yo - Just diagnosed with Stage 3 DLBCL

Hey Sarah,

Had a bit of a rough week (the "hangover" and the "punched in the stomach" feelings), but much better today, and did 5hrs work this morning without blinking.

I too get sharp sensations at the site of one of my Lymphomas occasionally - given that it's reduced in size so much that it's almost gone, I read it as the drugs are doing their job. 

1/2 way there for me, and keeping positive - but my kids and wife do take pains to remind me that I am allowed to feel a bit crap and down occasionally if I want to! 

Take care, keep strong and do what feels good 

Paul

Hi all, just a quick update.

Cycle 3 was hell for the first week, constant stomach pain, and generally feeling hungover. I doubled up the Omeprazole (on advice) and that cured the "punched gut" feeling. After that, all as good as previous cycles. 

I had cycle 4 yesterday, and that seemed to be much harder going than before. Instead of feeling stoned during the procedure, I felt badly hungover, and needed additional anti-nausea meds. I've also noticed light tingling in my fingertips this morning, so am going to phone the nurse team later today. 

Trying to stay positive though, and the missus decided that could be achieved with a new puppy! 

Cheers 

Paul 

Hi Paul , this may sound odd but it sounds like things are going ok, yes bumps in the road but we always have to remember that your body is being put through a lot but you are getting through your treatment and counting them down.

Puppy looks ace

Hi Paul

Great to hear from you, I was wondering how you’ve been getting on. Sorry to hear you’ve had a rough time, but you’re doing so well. Are you still managing to work?

What a beautiful pup, wow, what’s his/her name? Dogs are the the best.

I’m in for cycle 3 this Friday. Cycle 2 was a complete breeze, only a bit of indigestion, constipation and restless legs!?! Weird thing that…think it was the steroids.

Has your lump gone? Mine have reduced, I can’t feel them anymore although my consultant could. I keep getting a sensation in my jaw though that freaks me out!  Been having hot flushes too, don’t know whether it’s all anxiety related though, Dee quite stressed at the moment worrying as to whether the treatment is working.

Did you have your PET scan by the way? 

Take care and hope you start to feel better real soon.

Sarah x

Cheer Mike - Always good to feel reassured by someone who's experienced this all first-hand. 

Feeling much better than I did at 5am when I wrote the message... Just hate sitting around doing nothing!

Hi Sarah,

Feeling much better that I was at 5am... Just a bit sorry for myself when I wrote the message!

Cycle 2 was a breeze for me, but Cycle 3 was hard for the first week till I doubled up on the Omeprazole (I had really bad stomach pains and nausea)

My lump, which was the size of a Naval Orange.. .no Joke!, has completely disappeared. 

I've no concrete info on my PET scan due to lots of staff changes in the Heamo dept at Broomfield, but I am told that "It shows good progress with the treatment" - I do however have a contrast CT in a few weeks, which should give some definitive progress. 

The puppy is "Monty", he's a Cocker Spaniel (Blue Roan Sable) - we already have a 3yo Cocker called "Lenny" - if you want to see more of them, they have their own Instagram account: - https://www.instagram.com/lenny_and_monty/

Hope your Cycle 3 goes ok

Take care

Paul x

During my hard times (Stem Cell Transplants) we had post-it’s on the fridge, mirrors etc reminding us

‘This is all temporary

it’s not forever’ 

Wow, Monty is gorgeous and so is Lenny. I’ve got a working cocker spaniel, he’s 14 now, had him since he retired from the police (ex sniffer). He’s great, keeps me going.

Take care,

Sarah x

I like that Mike, I think we all need to be reminded of that, thanks for your ongoing support and encouragement, it means a lot.

Sarah x

Hi guys,

Glad to hear things are going well for you all.  Gotta love a puppy pic! So cute.

I can’t believe how quickly all my 6 RCHOPS came and went.  It seemed like it would be impossible at the very beginning but this Summer has come, and almost gone, so quick.  

i went in for my first of two high dose IV Methotrexate infusions this week.

I had one methotrexate in my back after a lumbar puncture early on in my RCHOPs which I had no reactions to but I heard that the IV method could come with some pretty unpleasant side effects - being sick, sh1tting yourself etc!!! So I was not looking forward to this treatment but I am pleased to say it passed without incident :0) 

My bed wasn’t ready until 8.30pm on Monday night so all they did was take bloods.

I started the methotrexate about 11am on Tuesday, it was a 3hr infusion. They then started the folonic rescue at 11am on Wednesday, this is just a syringe into the cannula every few hours.  My bloods were taken early this morning (Thursday) and sent off to another hospital for checking, and the results were in late this afternoon and my levels were down to 0.1 so I was discharged.

throughout the whole process I was simultaneously given sodium bicarbonate, potassium and glucose via a drip, about 5 litres worth a day!! In addition I probably drank a further 2 litres a day. 

it’s a tedious process because they also have to measure and test every wee and with that much liquid you go to the loo a lot! 

I will have a further session in about 3 weeks time so who knows I might get side effects with that one but from current experience it was actually a breeze, albeit a bit boring. 

This treatment was what they call elective although I’m not sure I did :0)   As it’s not for cure it’s for prevention and you might not have to go through this but if you do, as with all chemo we can all react differently, but don’t worry about it, it’s totally do’able! The worst part was the food :0)

Good luck with the rest of your treatment.