First treatment

Hi TJB60 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 blood cancer groups. I was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a so understand this journey rather well unfortunately.

So we can help better a few questions first.

What exact type of NHL do you have? (There are 60 types!!)

What is the exact name of treatment you having?….. eg - I had 6 cycles of R-EPOCH

Hi, it is some years since I had my treatment, back then you got lunch and hot drinks when they had time and I believe this is still the case in most hospitals. However I tended not to eat much when having treatment and tended to take a mars bar and some proper ginger beer which helped with the nausea.

If your having rchop it will be a long day, so as Mike has pointed out, let us know what regime you are having and we can be more specific

John  

Hi TJB60

Are you having R-chop? I’ve just completed 6 cycles of R-chop chemo and now waiting for my PET scan which I’ll have in about 5 weeks.

On my chemo days at the hospital I would take a huge bag full of all kinds of stuff! I compare chemo days like going on a long haul flight! You’re sat in a chair for about 6 hours, however it does go fairly quick. Anyway….things I would recommend taking….

Huge bottle of water - I found drinking lots (2 litres) whilst sat in the chair really helped in flushing all the drugs through.

A hoodie/cardigan…..it can get a bit chilly at times so good to take some layers.

Snacks - take whatever you enjoy. I used to spend the day munching sweets, popcorn, crisps….you name it!!

Where I had mine (Clatterbridge) they kindly supply tea/coffee and biscuits around 10:30am, then lunch around 1pm which was a sandwich, crisps and a fruit juice and then tea/coffe and more biscuits in the afternoon. 

You might want to take a book, iPad, phone to keep yourself occupied.  Also, don’t forget your charger!

I found I couldn’t really concentrate on a book, too much going on and plus the piriton they give you makes you feel a bit drowsy!

It is OK, just go with the flow and before you know it the day will be over.

If I can answer any questions then just ask.

Sarah x

Thank you for your reply. I really didn’t know what to take with my. My first treatment is next week. I’m not sure what R-chop is but I’m sure that next week will be a very quick learning curve for me  

Trevor 

I’m not sure yet which treatment it is. I have Follicular non Hodgkin lymphoma with high tumour burden grade 2.

Trevor. 

Hi Trevor TJB60 and thanks for this.

There are a few different treatments that can be used as first line for FL but most are usually done as a day case. Have you been told that you will be in over night?

The posts you have received already are great and have given you a taste for that first days treatment.

R-CHOP, R-EPOCH….. are all names of treatment regimes. The letters represent the different drugs used as part of the treatment.

My R-EPOCH had me in hospital for 5 days/nights for each of my 6 cycles (treatments) as it was being prepared for going into other treatments so most likely rather different from your journey.

Were you given any contact name and numbers for a Specialist Cancer Nurse? (CNS) as these are the people you can call to ask questions so that you are better prepared for that day.

This is a link to some good information about FL in the Lymphoma Action website 

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/follicular-lymphoma

FL is a low grade NHL, very treatable with good remission results. Do keep posting and asking your questions as there will be someone to help.

We also have a specific Follicular lymphoma group that you can have a look round.

It's likely you may have R-CHOP or R-Bendamustine. I've done both. Have they told you that you will lose your hair? You do with the first of those but not the second. My hospital offers lunch if you're there at the right time to order it but I found it grim so take my own sandwich. Good luck.