Good evening all, my dad has been diagnosed with large B Cell double hit lymphoma.. I hope I have that right. It has all been very quick- 2 weeks ago all was normal and my dad was a 68 year old man still playing weekly 5-a-side football. He now cannot weight bare, his face has dropped on one side as his nerves have been effected. He is about to undergo what looked like an intense schedule of chemo.
I‘m terrified of loosing my dad and what we are about to go through during treatment. I so badly want to be positive about all of this but my fear is out of control and I don’t know what to do.
Hi MMB95 and a warm welcome to this corner of the Community although I am sorry to hear about your dad. I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of T-Cell NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
It’s a scary time for you all and I can appreciate any apprehension you have about how your dad is at the moment, I was basically in the same position back and in late 2013 but the treatment did it’s job….. you can see my story through the link at the bottom of my posts.
Do you know the ‘exact’ name of the chemo he is having…,, for example my one was called R-EPOCH…… it was rather strong and intense but it did the job.
Trust in his medical team to get the job done.
You may find this link helpful as your dad gets ready first his treatment Top Tips for the day of your Chemotherapy.
Always around to chat and help out ((hugs))
Hi again MMB95 yes this all makes sense.
His treatment will be finely tuned based on how his Lymphoma is presenting and may change as time goes bye…… these are all strong treatments but all very effective.
My R-EPOCH had me in hospital for 6 days/5 nights on my 2 IV pumps 24/7 so I had about 120hrs of treatment every 3 weeks for 6 cycles….. and honestly I did ok with it all.
My story is rather complicated See my story as I had to go onto other treatments but I am 8 years out from my last treatment and I am turning 68 in in a few weeks 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 needs to know how he is getting on as at times it is trial and error to get the right one. I was only sick a few times during my 750+ hrs of main chemo but this was down to bad food choices.
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 his recovery will be.
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 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 the body recovers in time for your next cycle….. but the more chemo he had 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.
It’s a scary time but I have talked with many people on here bit also on the various Lymphoma Action - Support Platforms.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment and they run opportunities for both patients and/or family to talk with others……… I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey……. including family and carers.
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.
Always around to answer questions and help out.
