High grade non Hodgkin lymphoma

Hi Julie Treju and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your diagnosis.

I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

What exact type of Lymphoma do you have……  as there are over 60 types and sub-types of Lymphoma

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 big brother of R-CHOP called 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.

These are some of my simple tips.…. 

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 only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

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 your immune system is at its lowest……. then the body recovers in time for the 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 these simple rules 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 call it in… when on treatment I used the Treatment Hot Line number I was given……. but post treatment I was advised to call 111 and this always opened the right doors for me to get seen, assessed and treatment if required.

This is especially important with regress to Sepsis as sepsis doesn’t always cause a high temperature though, especially if someone is taking steroids……. below 35°C could be a sign of infection which your immune system may be unable to fight so this needs to be called in as well.

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 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.

My story is rather complicated See my story as I had to go onto have significant treatments mainly due to  me developing a second more aggressive type of T-Cell NHL in late 2013……….. but I am over 9 years out from my last treatment, I turn 70 this year and I doing great.

Any specific questions just ask

((hugs))

I’m so sorry . I am worried about this too I have a 15 year old daughter with special needs I care for her I’m just at the start of my Lymphoma journey biopsies and scans but now waiting

It’s like a double whammy when caring for someone who depends  and going through cancer aswell . Wishing you so much luck .

pam x

Hi 

Sorry you are having t go through this it's not easy particular at the start. After a couple of cycles you start to learn what to expect. There will be some days each cycle where you are unlikely to do much if anything unfortunately.  Personally it was days five to seven I found hard and really just wanted to sleep. Other days were fine and I was not working at the time (covid etc 2020) I was doing a lot of ground work etc in the garden.

There will days where you will need help. 

As Mike says you need to protect yourself from infections.

Your husband should be able to apply for attendance allowance? I don't think this is related to how much income you have.? Do not turn down any help you can get.

It's doable but it's not easy.