New diagnosis

Hi again Karen KL21 and welcome across to this corner of the Community but sorry to hear about your NHL diagnosis but you have found a safe place to talk with others who understand.

As I said in your post in the New to Community I was diagnosed back in 1999 with my rare type of low grade NHL eventually reaching stage 4a…….. by I am still around doing great.

Getting some understanding as to how NHL works is very important. In solid tumour cancers like Breast, Lung, Kidney…… a stage 4 diagnosis is very bad news, in NHL it’s a guide, a guide to where it’s presenting in your body and the treatment that is needed to deal with it and for how long.

As to talking with your elderly parents, I was the same but it’s important to ‘get’ that this is very treatable with good results,  Low grade NHL is not curable but can be controlled. I went with honesty for my parents as it was rather obvious that I was going to be having treatment so there was no way of hiding it.

A few questions:

What ‘exact’ type of NHL do you have? (there are many different types)

What is the ‘actual’ name of the chemo you are having?

((hugs))

It's my brother who has been diagnosed. He said it was large b cell non hodgkins lymphoma, the actual type of chemo I don't know, just that it's 6 treatments 21 days apart. 

I must admit the stage 4 thing terrified me as I always thought that was really bad, and as he's keeping things from our parents, I was wondering if he's doing the same with me. I hope in time he will tell them, he is getting support from Macmillan nurses and they have said they can send someone with him if he, or hopefully when, he tells them. Like you say, once treatment begins he's not really going to be able to hide it. 

Hi Karen…… first sorry I missed it’s your brother…… I have had a very long day 

We do actually have a dedicated Diffuse large B-cell lymphoma group so worth having a look at.

DLBCL is actually a high grade NHL so you do need to double check the 'type' with him....... and if it is the aim of treatment is to cure.

Yes stage 4 sounds so scary but I was stage 4 back in late 2013 and I am still around doing great.

This LINK will take you to information about DLBCL that is found on the Lymphoma Action website. Lymphoma Action is a small but very active UK Lymphoma Specific Charity who have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service where he could be matched up with someone who has walked the walk.

There are a number of treatments but he most likely is having R-CHOP but do try and check this. These treatments are very effective, yes full on but all do-able.

This LINK unpacks everything about treatment. Take some time and have a look at the links then do get back to me with any specific questions.

You can also see members stories by hitting our Community names.

Absolutely no need to apologise! I think I need to talk things through with him. He had an op to take the lump, lymph node and a saliva gland removed and that tested as large b cell nhl, then he had scans and more tests and those are the results that came through today saying he was stage 4. I'm glad though you have eased my.mind over that. 

So glad you are doing well, and hope you continue to.do so. Thanks for your help tonight. X

This LINK will take you through NHL Staging.....I hope it helps.

As always we are around to help out as best as we can ((hugs))