Good evening all. Having had almost a week in Frimley Park Hospital preparing me for chemo which starts on Tuesday I thought I ought to say hello
Hi , A few folks have had the O-CHOP version, my treatment was rather different but on the whole I found my treatment to be ok.
I will always recommend that when you embark on the treatment journey do read the information provided by your team and also on recognised Lymphoma Support Charities like Lymphoma Action but stay away from random Google search’s.
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:
Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.
Fatigue may well build 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.
During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.
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 as this will flush out all the toxins released by the chemo and protects your kidneys.
Thankyou. It is a pretty severe learning curve but I am very that this group is here
Before you know it you will become an expert
Take each day as it comes. Keep a note book as this helps you remember the questions you want to ask your team and also a place to keep notes as to what they say or what is going on. I have a few as I have been in my journey for 22 years now.
I don’t have FL but a rather rare skin NHL that like FL is incurable but very treatable. You do need to develop the mind set that you have a very treatable chronic condition.
During my main treatments I used to go see my GP every 3 months just so he could ask about my treatments so he could understand and learn ….. that is life with a rare Lymphoma…. hit my community name Thehighlander to see my story.
The most important thing I would say in these early days is a blood cancer journey is a war of both Body and Mind - Leave the Body to your Medics and You deal with the battle in the Mind. Control the space between the ears and you will have a much smoother journey.
Always around to help out and listen.
Hi, my partner is due to start o-chop on Tuesday for 6 cycles. Can I please check after the 21 day cycle is day 22 the start of the 2nd cycle or is there a week off? We thought we understood then began doubting ourselves. Thank you.
Hi susieq and I see it's your first post so welcome to the Community. I am Mike and I help out around our various Lymphoma groups.
I was diagnosed way back in 1999 with a rare, incurable but treatable different type of low grade type of NHL Stage 4a so although my Lymphoma ‘type’ is different I know this journey well.
I had a slightly different mix of drugs (R-EPOCH) but the standard rhythm of treatment cycles are 21 days from the first treatment day (day1 ) then on day 22 he will start the second cycle so day 22 turns into day 1 again and on he goes from there.
I had 6 cycles of my treatment with days 1 to 6 in hospital on my IV 24/7 but many of these treatments only required the day 1 treatment to be done as a day patient in the chemo unit.
Always around to chat.
Thank you so much for your reply and clarification. His treatment starts today so keeping everything crossed,
Folks going into treatment are all looking for the side effects to come along and often it just does not happen - wishing him all the best.
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