MATRix treatment

Hi again HK2103 and well done navigating across to our corner of the site.

Lets see who is still looking in who have been on the same journey as your partner is about to start.

You can put MATRix into the search tool  near the top and this will bring up all the older posts and as always you can hit reply and see if the members are still using the site….. many people do tend to move on from the community once treatment is finished and get on with life.

On the whole having chemo is basically the same across the different types of Lymphoma just the drug mix is specific for each type.

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.

My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

I had my 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 turned 68 in 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. I was only sick once during my 750+ hrs of main chemo and that was a very bad food decision.

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 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 she 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 she 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 her 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 chat.

Hi Mike, 

Thank you so much for all the great advice and guidance. I have just dropped him off at hospital for him to start his first cycle of chemo, it has all happened so fast in the last few days. he has taken a years supply of water, ginger biscuits and pineapple chunks so your reply with the link to the top tips came at the best time.

I am hoping he may even be home for Christmas but we will see. We also ordered a digital thermometer to check for high temperature when he is home, again after reading the info you shared so thank you. I will let you know how he gets on. 

So pleased you have been doing so well in the last 8 years, I hope you and your family have wonderful Christmas and a happy New Year. 

Helena

Hi Helena HK2103 wishing your husband and yourself peace….. as best as you can - don’t overthink all this and when it comes to the side effects, only get uptight if they come along…… all these years later I reflect back on how some of the things I thought would happen just did not happen ((hugs))

Hi, my husband was diagnosed with primary CNS lymphoma in mid August. He finished his 4 cycles of Matrix at the start of December. There have been tough days but overall it’s not been as bad as aome of the literature implies it could be. His tumour has affected his left side and made walking and coordination difficult so we’re dealing with that as well.

Main side effect he experienced was around lack of appetite and things tasting funny (best tip for that was a sheet of A4 from the dietician about always have a bowl of treats / nibbles close by), hair loss and one bout of diarrhoea that took an extra stay as an in patient to get under control plus asymptotic covid. It would have been good if someone had explained what low platelets really meant as we only got to find out when he cut himself shaving and we couldn’t stop the bleeding - that’s when they told him to use an electric razor…

We didn’t really anticipate what they meant by check ups and can’t believe how easy it now is to spend 6 hours in the day unit not doing a lot (I’m driving him to checkups and it’s almost a 2 hour round trip so I hang around). We’ve become experts on Hb, PLT and neutrophil levels and get the nurses to send us the numbers! The staff on the day unit are amazing and just a phone call away if we’re worried.

My husband had a contrast MRI just before Christmas and we’re waiting for the results and a decision about the next steps, hopefully a stem cell transplant - he had a successful stem cell harvesting session after cycle 2. We’re down to weekly check ups which feels weird.

My husband has joined the rare lymphomas support group at Lymphoma Action - a monthly zoom call - which he’s found useful as there are people who’ve been through the same thing so worth looking into.

He says he thinks the key is to have a positive mental attitude and ask the staff if you’re don’t understand things - they’ve seen it all before.

Hi SC7 and I see it’s your first post so welcome to this corner of the community but sorry to hear about the journey you and your husband has been on.

I have a different type of NHL but I have had 2 Allo (donor) Stem Cell Transplants (SCT) June 2014 then in Oct 2015 and I remain on n remission to this day.

The SCT journey is rather unique so to help folks better we do have a dedicated Stem Cell Transplant support group where people from different blood cancer support each other during the SCT process.

Do remember to join the groups as this helps you connect better.

I am glad you have found the Lymphoma Action - Rare Lymphomas Support Group helpful…… they have a number of regular Support Platforms both for patients and family.

They also have a great Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.