Hello Karla,

A big welcome to Cancer Chat. I am sorry to hear you are finding it difficult to find information on this very rare form of lymphoma. I just wanted to let you know I have asked our knowledgeable nurses to respond to you as they may have some useful information to share with you on this type of lymphoma. It may take them a few days though to post a reply. If you live in the UK, feel free to ring them Monday to Friday 9am to 5pm on this free number 0808 800 4040. 

I hope you will get to talk to others here who have also been diagnosed with this specific rare lymphoma.

Best wishes to you and your husband,

Lucie, Cancer Chat Moderator

Hi Karla,

I am sorry to hear about your husband’s situation.

I belong to the nurse enquiry team and Lucie our moderator asked us if we could post on your thread.  Unfortunately when someone has a rare cancer it is often difficult to find information written for patients and it isn’t always useful to read what Google finds as it could be written for professionals using medical language. 

I would advise you both to ask the team treating him. You can ask them if they have consulted with any experts in this field as this would often happen when a more rare cancer has been diagnosed.

There is some information on an American website from the The T-Cell Leukemia Lymphoma Foundation that you can access here. Just bear in mind the fact that the health care system in America is different.

There is another charity called the Lymphoma Association whose website is here. It may be worth getting in touch with them to see if they can tell you anymore. Because they are a lymphoma organisation, you might have a better chance to get in contact with someone who has experience with this type of lymphoma when contacting them.

Best wishes

Suzanne

Thanks Suzanne

I have tried several cancer forums now but seams like he is the only one out there! I have read almost every single medical journal in the disease worldwide so know what we are dealing with. Just hoped someone else had the same or was a close relative so we could share thoughts. Anyway I am still pretty new to this chat so hopefully someone else is in the same situation. I understand from my readings that the SMILE chemo therapy that my husband will start next Monday is still on trial? Don't worry if you don't know. We have a lot of confidence in the staff working for my husband and know he has a massive team of doctors throughout the UK looking at his case. Thanks for your feed back anyway. 

Karla 

Hi Karla

I have just come across your post.

my husband was diagnosed with this in 2013 & has been in remission since January 2014

like you I have found it difficult to get any information.

he treated with RT but no chemo.

 I would love to say it's been all plain sailing but unfortunately it's been anything but.

Hi Karla,

Sorry to hear about your husband, how is he doing?

There is some info on the LA website (only a tiny bit though!) : http://www.lymphomas.org.uk/types-lymphoma/could-i-have-skin-lymphoma/skin-cutaneous-t-cell-lymphoma#extranodal-nasal

Did you manage to find anyone with the same type on maybe an american forum (or another big country!)? You might have more joy that way :)

Sorry to hear your having difficulty finding the info.

If your on Facebook join the group. THE LYMPHOMA CLUB.

it has over 93000 members from around the world.

Maybe someone can help.

xxx

Hi, 

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

Thanks

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??