New Diagnoses Non-Hodgkin Lymphoma

Hi princejim and welcome to this corner of the Community although always sorry to see folks joining us.

I am Mike Thehighlander and I help out around our Lymphoma groups. I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (CTCL) Stage 4a so know the journey rather well.

Do you know the 'exact' type of NHL you have as there are number of different types.

Do you know the 'actual' name of the chemo regime you are having as there are a number and each requires various times in hospital to have the treatment.

An all day session often used for some treatments) will feel long as it’s all new but will be over before you know it. My chemo (R-EPOCH) had me in hospital for 5 days and nights so I had to pack a bag but a kindle will be good, a magazine, some music and headphones, some warm lose cloths as hospitals can be on the cool side. Short sleeved top for easy access to your arm for getting lines in but say a fleece or small blanket/shawl for going over your shoulders.

You should get food and drinks during the day but your favourite snacks can be comforting.

One thing is a note book to keep a record of what people are saying about your treatment, drugs......... and very important - the contact numbers you would use if you have any problems once you are home.

Non Hodgkin’s Lymphoma is an odd cancer as unlike other solid tumour cancer like Breast, Lung, Kidney........ the stage number is not that important, it is used to identify where your cancer is, what treatment is best and for how long.

As I said I was stage 4 but I am 6 years out from my last treatments and doing great. Do also check out Lymphoma Action, a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service where you can be linked up with someone who has walked the walk before.

Happy to answer any questions.

Morning Princejim , That's what I had , are you sure it's an all day session & that your not getting admitted. I was admitted & was on chemo for the first 13 days then a break for a week then chemo for 6 days then a 2 week break , that's the way my cycles went , I spent 2 weeks in my local hospital till they found out what was going on with me , then I spent 14 weeks as an inpatient , could be because of where mine was , If you like reading id say your Kindle will be enough.. You'll do this , read your Kindle and before you know it your 1st chemo is done , with mine , I watched tv or went to sleep... I wish you well , let me know how you got on , 

Also:

1.  A neck pillow, one of those horseshoe shaped things people sometimes use on airplanes.

2.  A portable power bank, in case any device needs recharging

3.  A sleep mask

First treatment is a long days as they take things slowly to check you don't have any adverse reactions

Take some stuff  to read and listen to and something to munch though you probably will not get peace to make use of them. Temperatures BP etc they do very regularly  first cycle

Thanks

Thanks for that still in shock will get back to you Tuesday. Have Linked to the action group will take a look later.

Good luck

Cycle one and two are a learning curve after that it's it just something you have to do. Doable but tedious as you just want to get it all done and know that it has worked.

Hi, can I drink alcohol?

Hi princejim...... this is a question you need to ask your clinical team as each team, each presentation and treatment used will be given a different answers.

This is taken from the Lymphoma Actions Site

Is it safe to drink alcohol?

Generally, it should be OK to have the occasional alcoholic drink between chemotherapy cycles when you feel well enough, but check with your hospital consultant whether it is safe for you. Alcohol can interact with some drugs and affect how well they work. Remember, too, that you might feel the effects of alcohol more quickly now than you did before you had treatment.

I was an inpatient for 5 days/nights for all my main 6 cycles of chemo and my first cycle was over New Year..... This was a big deal living in the Highlands. But the ward staff took in party food and various drinks so we could take in New Year in style....... so yes I was sitting with my two chemo pumps pumping in one arm and in my other hand I had a VERY 'small' Single Malt.

I obviously checked with my chemo nurse and she said "Mike, we are pumping your body full of poison so a little drink like this will not make much difference - but this is NOT permission to have a regular drink....... don't take any drink when you are on chemo and the week after but you may have a 'small' drink when you are a few weeks out and your counts are ok...... and n.ot regularly

Thanks Mike.