Hi all

Hi MaidenofKent and a warm welcome to this corner of the Community although I am so sorry to hear about your dad. I am Mike and I help out around our various Lymphoma groups. It has certainly been a scary time for you all but most certainly finding his diagnosis is stage 4 NHL is far more positive than stage 4 Lung Cancer.......... as Staging in Lymphoma is completely different from other cancers.

I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma (Slow Growing) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

High-grade non-Hodgkin lymphoma is actually very treatable and the initial aim of treatment is to provide long term remission and as times goes on it could be seen as cured. 

What type of High Grade NHL has he?...... there are a few.

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 you will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

I had the 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 120hrs each treatment........ R-CHOP is nothing like this.

My story is rather complicated as I had to go onto other treatments but I am over 7 years out from my last treatment and turned 67 last Nov and doing great.

Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at times it is trial and error to get the right one.

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 he does 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 your 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 he 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 your 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 liters every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him 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 him ready for his 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

Always around to help more or just to chat ((hugs))

Hi, I have literally just come to the end of my planned RCHOP treatment. I think everyone’s experience is slightly different but this is how I found it.

For me cycle 1 was the worst, I straight away had aching hips and back, which over the first week extended to most of my body. I also felt tired and weakened. But for the second half of the three weeks I then felt fine. A hot water bottle and a pillow under my legs helped with the aches and you can take painkillers if needed.

The second to fourth cycles then followed a predictable pattern. I felt sick on the evening of the chemotherapy, but then fine for the first 4-5 days. Then I would get the aches, but not at all as severe as the first cycle. Muscle weakness and tiredness from about day 5-11 then again I felt fine.

Now I am just weakened but able to go about my day.

My advice is, however rough you feel on a given day, get up and shower (really helps) and try to move even for a few minutes here and there through the day. And keep your mind occupied. I’ve been doing puzzles, reading a lot, chatting to friends on the phone. All of that really helps too.

Definitely drink lots of water every day.

I tended to feel a bit anxious at times, I found that telling the nurse and getting reassurance from her helped with that. Apparently the drugs can cause a bit of anxiety.

My hair only started falling out about three weeks after the first treatment, I think that definitely happens to everyone on RCHOP.

I hope that’s useful for you, like I say, others’ experiences might be a bit different, but tell the nurses if your dad struggles with anything and they can usually help in some way.

Best of luck to your dad, I’ve been told by a few different people, doctors and patients, that RCHOP is very effective so that’s positive.

I had the same wrong diagnosis. So what a relief to be told it was 'only' lymphoma. RCHOP is definitely doable but quite hard. I had the aches the previous poster described and felt sick a lot of the time. My advice would be to seek help from the team if the anti sickness drugs they give don't work as there are others to try. I put up with it for far too long and it wasn't necessary to do so.