Hi, 

did you find anyone else with NK T Cell Lymphoma. My husband has been diagnosed. Would love any more information.

Thanks

Hi, 

did you find anyone else with NK T Cell Lymphoma. My husband has been diagnosed. Would love any more information.

Thanks

Hi, I was diagnosed with extranodal NK T cell lymphoma (nasal type) in 2006 at age 28 (female). Had intensive chemotherapy and I've been in remission since January 2007. I'd be happy to answer any questions although it was a long time ago. 

Hi would be interested in any advice you can give. I am 50 ur old male and have just recently diagnosed with nk nasal lymphoma. I attended ent three weeks ago with a blocked nose, no other symptoms. No weight loss, no fatigue, no swollen lymph nodes absolutely nothing. Biopsy done last week informed of result - devastated!!!! Two days later seen by haematology and confirmed diagnosis. Full CT scan and bone marrow sample etc taken. Now have to wait a week for when/how treatment starts. Imagination runs riot every little ache , pain etc you think it’s spread. I suppose I’m just looking for experience of others in same situation. I am the only second case consultant has dealt with in 21 years so not many out there. Why me??

My partner has just been diagnosed with Extranodal KT/T cells lymphoma Nasal type. For 6 weeks he had a swollen face, numbness, pain, weeping eye. Thought originally dental. Lots of head scratching then biopsy and this diagnosis. He's 55 years old. Been told roughly 20 people in UK diagnosed every year. Can anyone share any experience of this please? Googling isn't helpful

Hi there first of all sorry to hear about your partners diagnosis. I would say don't Google, the information you read can be out of date and in my situation did not really help. I found just listening to my consultant was best. 
The treatment I expect your partner will be on is SMILE ( think that's still current treatment plan) likely starting with radiotherapy which I had for six weeks followed by chemotherapy (4-6 courses). Overall it took 9 months and it was tough but I am now 2 years in remission with one more review end of this year and all going well I'll be discharged.

I don't want to bombard you with information as I'm sure this diagnosis is still raw but please come back to me with any questions you have as you progress through the treatment. I struggled initially as couldn't find anyone that had been through thhis. My consultants first words were 'we are planning to cure' so that in itself gave me confidence.  
Stay positive, it can be treated.

Paul.

Many thanks for your reply Paul. I am so pleased to hear you are doing so well. Can I ask what stage your cancer was when they discovered it? My partner is having to wait 2 weeks now for a CT scan to determine the stage, then decide on the treatment plan. Just worry that as it's too long a wait!

I was stage 1 - it was only found locally which was a big bonus. I had symptoms for about a year before I went to GP much to my partners dismay. 
I was the same waiting for CT scan but once staging etc was done treatment moved swiftly. I was about 6 weeks from result of biopsy to starting radiotherapy. 

He has had swollen face (left side), numbness and pain for about six weeks. Originally thought dental. Gave 4 courses of antibiotics. Did biopsy 2 weeks ago, got this result yesterday. I am hoping they have caught it early.

Shirley

I'll keep my fingers crossed.

The symptoms you described I had but at different times which is probably why I left it so long.

If you need any advice once treatment starts feel free to message.

Also look after yourself as I know how tough it was for my partner.

Paul

Thank you Paul. Much appreciated.

One more question just now Paul, was all your treatment on NHS? My partner was wondering if things could move quicker if he went private. Certainly for the initial CT scan?. 

P.S. would be good to have some direct contact with you rather than go through this public forum. Not sure how we could go about this, or if indeed you would be willing? I promise we wouldn't bombard you with questions! I feel it could help him during the treatment stage to ask you for the odd insight!