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. 

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!

Hi, absolutely no problem to discuss. Can do by email, phone, FaceTime or skype whichever you prefer. Anything that will help.

All my treatment was in the NHS (Scotland) which I would say was nothing short of excellent. In my situation I would not have been any quicker privately but I am aware not every area will be the same.

I would speak to your consultant and he/she can advise if CT privately would speed things up.

paul

Hi [@Shaloolah]‍ and Paul, 

I saw you were thinking about sharing your contact details.

This isn't allowed on the forum but you're more than welcome to do this via private messaging. To find out more, just click here.

Kind regards,

Steph, Cancer Chat Moderator

Thank you that's what I was planning to do.

Hi, I'm sorry for your news but I thought hearing a success story might see that there is definitely hope I was diagnosed in 2006 with NK Tcell lymphoma - extranodal nasal type. I had been ill for a while with various symptoms, including liver infection, facial paralysis and developing a limp (!). Finally got a diagnosis after my stomach swelled and I was having raging temperatures. It was stage 4 and I was informed that the outlook was gloomy. Treatment began immediately - CODOX-M and IVAC. 15 years later, with a different career, a husband and another child, I have been fit as a fiddle ever since! The treatment wasn't terrible and the NHs consultants, doctors and nurses were all amazing. I was treated in the midlands btw. I wish you and your partner all the best xx

Hi, I'm sorry for your news but I thought hearing a success story might see that there is definitely hope I was diagnosed in 2006 with NK Tcell lymphoma - extranodal nasal type. I had been ill for a while with various symptoms, including liver infection, facial paralysis and developing a limp (!). Finally got a diagnosis after my stomach swelled and I was having raging temperatures. It was stage 4 and I was informed that the outlook was gloomy. Treatment began immediately - CODOX-M and IVAC. 15 years later, with a different career, a husband and another child, I have been fit as a fiddle ever since! The treatment wasn't terrible and the NHs consultants, doctors and nurses were all amazing. I was treated in the midlands btw. I wish you and your partner all the best xx

Thank you so much for posting this. It does inspire great hope. Sounds as if you went through hell, but have well and truly come out the other side. So pleased for you. 

Hi Kezbom77 

I'm newly diagnosed with ENKTL , my doctor has only treated 3 and I'm the third. Very overwhelming and scary , start chemo this week.