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.

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

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

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

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

Hello Emily

My husband is doing well, he completed his 6 rounds of rchop and 2 methotrexate. Started his 2 years maintenance treatment plan in July last year of Rituximab. We had a little blip with his kidney function and bit of pain, so they ran a scan and we were delighted to find out that the *** is still asleep and isnt rearing its ugly head! 

How are u?

L xx

Hi Laura,

I came across this thread today and I'm extremely pleased to read that your husband is doing well and is in remission.

I hope you don't find it insensitive but I would like to ask how he was diagnosed. I'm considering paying for a private scan (having all the B symptoms plus abdominal pain but my bloods are ok so doctors are not concerned) but I'm not sure which one would be best in these circumstances. I have pain near my bowel and my spine so I'm suspecting abnormalities in these areas. This has been going on for 2.5 months and I have two kids to look after who are 6 months and 3.5 years. So really struggling and desperate to find answers asap.

Thank you for reading and apologies for being nosey.

Hello Anita,

Dont worry I dont mind at all, anything to help. I remember how scary it was right at start. Anything you want to know just ask ♡

Firstly my husband had 0 symptoms at all that come under the general to look for list, he basically had what he thought felt like a golf ball in bottom of his spine when laying down, which didnt give him any bother walking around. Then from Oct he had an off and on pain in his kidney area, was seen couple times and told was most probably a bacteria infection given 2 courses antibiotics... seemed to get really bad and i attended docs with him at start of Dec to demand they look into things further as my husband was in tears with pain and antibiotics were doing nothing, so they ran bloods think relating to kidneys, were called back up next day to be told his kidney waa failing to go straight to hospital... hospital first of all done sonogram type test on his tummy and kidney, they could see mass and done a CT scan. This is when we found out he had large mass and smaller surrounding masses in his tummy, bigger mass wrapper around his ureters (hence kidney pain) was also bone involvement in right hip and lower spine it was so close to entering his spinal canal. Stage 4.

He never felt tired, never lost appetite or felt full quickly, no night sweats or itching, no weight loss. Other than the above pain he felt couple months before diagnoses.

As his type is not curable he gets regular bloods and they now come back as no active cancer (sorry don't know medical term) but at the start at docs etc, dont believe as he didnt show symptoms the doctors didnt run rests that check for cancer. I think it was kidney related bloods.

I hope this helps. Hope you get answers.

Please let me know if i can help you further and let me know how you get on.

Best wishes

L xx

Hi Laura,

Thank you so much for taking the time to respond. And I am so glad there is no active cancer cells found. 

What a journey you guys had! Kidney function test is something I had done and it's just a simple blood test so cant believe the doctor didnt order it sooner. I'm glad things got moving before more damage was done.

I had and ultrasound done of my tummy. Told the person doing it where it hurts and they said as it's bowel they don't check that area. Went private and was told I have some changes on/near the bowel but need colonoscopy or CT scan to look closer. GP says his scan was clear so no need for these tests lol.

In the meantime I developed pain in my spine and legs and arms from what I think is something pressing on the nerves. The doctor says it's anxiety. In all fairness he did loads of blood tests but refuses any scans.

I had more blood tests done last week (I think they did the cancer one too) so will have the results at some point in the next week or so. If things don't progress from there I will do that private CT scan. As this is what your husband had I'm sure it will be the right one.

Thank you again for your help and I will let you know once I get some answers xx

Hello Anita,

Yeah the Ct confirmed the Lymphoma, needed biopsy to confirm the type.

What i will say is, you know your own body and if something isnt right then push to get to bottom.of it.. i would be concerned if they can see changes on or near bowel. Colonoscopy is good shout, i have had one of these as I suffer from bowel condition. But yeah allegedly if you have lymphoma a CT scan lights up.

Good luck on your results ♡

L xx