Hi I’m new to the group 
My husband was diagnosed with large B cell lymphoma 9th February this year. This was a total shock as when he had visited a&e a few weeks prior he was told he had more than likely a pull due to his job.
I have received a copy of the letter sent to our GP stating he has extensive lymphadenopathy above and below the diaphragm and his lower CT scan showed significant retroperitoneal lymphadenopathy with involvement of the psoas muscle.
My husband started his R chop chemo yesterday and I’m sure from what I could take in the consultant mentioned about some radiation for the lymphadenopathy.
Has anyone had this combination that could give me a little hope and what treatments they had please.
Hi Prettysweets and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband - 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 Low-grade non-Hodgkin lymphoma (CTCL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
With over 60 types and sub-types of Lymphoma and these all being able to present basically 'anywhere' in and on the body the list of consultants reports can be massive.
My Lymphoma is a skin Lymphoma is 7 in a million rare and mainly presents on the skin..... but eventually it showed up in my Lymph Nodes and them in my Bone Marrow making me stage 4.
As you husband's NHL is showing above and below the diaphragm he will also be classed as stage 4........ but as his NHL is a High-grade non-Hodgkin lymphoma fast growing NHL the initial aim is to treat to cure...... this is not available for my type of Lymphoma......oh Lymphoma is a very complicated condition.
But and it is a big BUT....... Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.
Staging in Lymphomas identifies.....
1) Where the Lymphoma is presenting in the body (it can be anywhere)
2) What is the best treatment approach and best treatment type for your presentation
3) How long your treatment needs to be.
But let's see if there are any group members with the exact same presentation.
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.
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 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 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.
These are some of my simple tips.
Nausea may be a challenge, but remember hr 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 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 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 his 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 his next cycle….. but the more chemo he has 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.
There is no need for him to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check that folks visiting him at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,
I have said enough do get back to me with any questions ((hugs))
Thank you so much for replying.
it’s reassuring reading your story and that there is light at the end of what seems a very dark tunnel at the moment.
you wouldn’t believe how much it’s meant to us you taking the time to reply.
It can feel very lonely and surreal (like a very bad dream) and you will know, but to read your story means so much.
thank you again and we are so happy you are doing so well - it’s great to hear 
xx
Hi again Prettysweets and good that you found my initial reply helpful.
At the start this all feels and looks imposable....... and although the treatments used for Lymphoma are full on - this can be done and on the whole, compared to many other cancers.......with good results.
This group is here to help....... and you can also have a look through the posts in our dedicated Diffuse large B-cell lymphoma support group.
To widen your support base can I suggest that you also have a look at Lymphoma Action.... I also volunteer for Lymphoma Action.
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.
They run regular Support Platforms both for patients but also for family and carers..... 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.
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 chat.
