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NH follicular Lymphoma stage 4

31 Dec 2017 19:46

Hello,

My husband was diagnosed with the above on Dec 20th - started RChop chemo on 21st they have said they plan on 6 cycles every 3 weeks - he has growths in tummy, some on right hip and in spine.

We have been told this type is treatable but not curable - just petrified at the fight let alone living with the fear of when it will return.

Is there anyone gone or going through the same that can offer me any help or advice? I feel helpless... 

He is only 35 and we have 2 young children of 2 and 4... 

L xx 

Re: NH follicular Lymphoma stage 4

31 Dec 2017 20:59 in response to Laura85

Hi Laura85

Welcome to Cancer Chat, I am so sorry to hear of your husband's diagnosis, he is indeed young for this type of lymphoma. You are right that this type is not curable, but it is very treatable. I was diagnosed with FNHL stage 3 11 years ago December in my 50s, was treated with R-Cvp and had a complete response and was luckily in remission for 5 years. My relapse was treated with R-Chop and I recently had radio therapy for an isolated tumour. I have known people with this condition still going strong after 20 years. 

It is always a terrifying prospect to receive this type of diagnosis for the first time as we have no knowledge of the treatments and are stepping into the unknown. Do you have a Clinical nurse specialist you can speak to, they can often be an ear to listen and explain things to you.

I do hope everything goes well for your husband. I will be thinking of you,

Christine.

Re: NH follicular Lymphoma stage 4

31 Dec 2017 21:23 in response to Wolfhound

Hello Christine,

Thanks so much for taking time to reply to me...  ♡

Your reply has made me feel much more positive, think its just the words " not curable" thats scaring me.

Do you have any on advise on how i can help him other than be there or attend his apps? 

I hope everything goes okay for u! 

Lxx

Re: NH follicular Lymphoma stage 4

31 Dec 2017 21:51 in response to Laura85

Hello again,

Yes, not curable is a horrible thing to get your head around, but it is also not a death sentence, rather a chronic condition which will be treated when needed and hopefully put back in its box each time, this is how we deal with it. My husband is my rock, he always takes me to hospital appointments, but as time goes on you will find that life will not all be about lymphoma and life can be enjoyed again.

Here's to 2018 may it be a good one for us all.

Christine xx

Re: NH follicular Lymphoma stage 4

31 Dec 2017 23:02 in response to Wolfhound

Love this reply... defo makes me feel much better. Thank u. All the best to 2018 ♡ xx 

Re: NH follicular Lymphoma stage 4

29 Mar 2018 18:01 in response to Laura85

Hi @Laura85 ‍  - I wondered how your husband was doing?

I am 5 cycles in to my R-CHOP for transformed follicular lymphoma... 

Hope all is going OK anyway

Emily