New diagnosis and treatment

Hi Peterd and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different I do appreciate the challenges of this journey rather well.

What type of NNL do you have?….. and what treatment are you going to have?

As for your 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.

It’s 10 years this week since I had my main chemo. I had 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.

My story is rather complicated See my story as I had to go onto other treatments but I am coming up to 8 years out from my last treatment and I am turning 68 in Nov and doing great.

Nausea may be a challenge, in but remember you must not to suffer in silence as there are lots of tools available - but tell 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 good choice.

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 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 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 chat more.

To be honest I can’t take your story in at the moment as I’m so tired and in discomfort. I think you are wonderful way are coping with all you have . Perhaps later I’ll appreciate all the advice but at the moment I’m just overwhelmed by all that is to come. One thing, when you say if you get a high temperature and you ring the hospital, will an ambulance come out or are you expected to make your own way. That worries me a lot. If you’re ill you cannot drive or if early hours there’s no transportation 

From my experience having had some bad infections, we never actually managed to get through to the Heamatology unit in the hospital out with normal 9-5 during the week….. out of bourse they tend to be very busy.

So we rang NHS 24 on 111 and once we had talked everything through some times my wife took me to hospital but I have had a few blue light journeys to hospital - if you don’t have transport then you may have to wait for an ambulance to be sent out to you…… have you any family or friends that you would be able to call?

They assured me that the number I was given would be answered night or day. No good if I’m on the floor unwell and can’t process calling and arranging. I’m on my own and I’d have to rely on neighbours I supposed. Either that or get my daughter to come over. I’m surprised that you had trouble with the number as they assured me ever would be ok

Over my 24 years unfortunately nothing surprises me when it comes to our overstretched NHS but let’s look for you not to have to make urgent calls.

The thing is my infections actually happened after my treatment was completed so you can’t make any assumptions as to what will or will not happen.

At this early stage it’s so easy to Catastrophize but as I said I had no real problems during my very strong treatment.

Do you know the exact name of the treatment you are having?……. and what type of Lymphoma do you have? 

Hi

My husband has just been diagnosed with N-H Lymphoma (stage 3A) Follicular type. We have been told its slow growing so no treatment unless he develops symptoms. We were told some people live to old age (he is 44). Has anyone been diagnosed with this type. Any advice you can pass on? It feels like we have a dark cloud over us but we have 2 kids so will try to keep things as normal as possible. He had melanoma 6 years ago so it feels like here we go again! Is it just night sweats, weight loss we need to look out for?

Hi AHynd and welcome to our little corner but sorry to hear about your husband's NHL diagnosis.

Yes people diagnosed with various types of Low-grade non-Hodgkin lymphoma…… like your husband’s Follicular Lymphoma can go for many years on what is called Active Monitoring (Watch and Wait) ….. some never need treatment but others go on to have various levels of treatment.

I was diagnosed at 44 back in 1999 with a different rare type of low grade NHL and it took 14 years before I needed full on treatment.

I have had various treatments over the years…… but I turned 68 last Nov and I am living a great life.

It’s important to understand that Lumphoma is a very different type of cancer compared to your melanoma…… it is generally accepted that most people with live with their NHL for all their life.

Hi again AHynd there are over 60 types and sub-types of Lymphoma but as FL is the most common type of low grade NHL we do have a specific group for this type - the link below will take you to the group.

Follicular Lymphoma