Primary mediastinal b-cell - Starting R-CHOP 14 next week

Hi starrynight_ and a warm welcome to this corner of the Community although I am always sorry to see folks joining us.

I am Mike and I help out around our various Lymphoma groups. I don’t have primary mediastinal large B-cell lymphoma (PMBL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell Non Hodgkin's Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

Although PMBL is classed as a fast growing High-grade non-Hodgkin lymphoma the initial aim of treatments like R-CHOP is to cure or at least put you into long term remission.

There have been a few folks come through the group with PMBL so let's see if they are still looking in.

R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories as the Side Effects of Treatments can be ever so different.

I had the more aggressive, big brother of R-CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120 hrs each treatment........ R-CHOP is nothing like this.

My story is rather complicated (See my story) I had to go onto other treatments including 2 Stem Cell Transplants but I am over 7.5 years out from my last treatment and turned 67 last Nov and doing great.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one........ I was never sick during my 750+ hrs of main chemo.

Cancer-related 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..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps you well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

This link will help you get you ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

Happy to answer specific questions or just to chat ((hugs))

I had 6 cycles of R-CHOP 21 for a different B cell lymphoma in 2020 and have been in remission for 3 years now.

You will have steroids every cycle but in the first cycle you start them before your first infusion.  In addition to the R-CHOP infusions, you'll be taking other medications to prevent infections and complications and possibly an injection to boost your white cells.

The effects of chemo are cumulative.  Each cycle seems to follow the same pattern, but the side effects intensify with each cycle.

Follow instructions about what to do if you have a temperature or you feel unwell or have a temperature to the letter.  It's imperative that specific tests be done quickly and appropriate protocols started.

Don't wait until your next appointment to mention side effects.  Contact your team immediately so they can take action to address them.

Your first infusion will be given more slowly to monitor for reactions.  It will be a long day.

Many thanks Mike- very helpful link to the chemo checklist, and all good advice. Already on top of managing hydration and temperature checks! Here’s hoping cycle 1 will pass without too many nasty side effects. Thanks again.

Hi starrynight_ 

I had Diffuse large B-cell lymphoma (DLBCL) back in 2020  after a very similar path to diagnosis. Also on my lung.

Hope your first cycle went ok? the first is the scariest as you don't know what to expect. As you progress you learn how to deal with things. While I didn't get completely wiped out I had a couple of days each cycle where dossing on the couch was the order of the day usually day six and seven. It all got very tedious but you will get there. While its good to keep active and eat healthily there will be days when it's fine to just sleep amd munch ice lollys or whatever you fancy. (I got through a lot of ice lolly's)

My last follow-up checkup is this week and that should be me done with the hospital.