NK TCell Non hodgkins Lymphoma Nasal Type

Good evening, 

My brother has recently been diagnosed with NK TCell Non Hodgkins Lymphoma Nasal Type. It has been very distressing for him and our family. The doctors have said it is very rare which has made us feel very anxious. He has stage 4 but is yet to start treatment. I have been googling and the prognosis does not look good. I feel sick with worry, I am just wondering if anyone else has this specific type and how soon they received treatment from the point of diagnosis? Thanks in advance x

  • Hi and welcome to our corner of the Community but sorry to hear about your brothers diagnosis.

    NK T-Cell Lymphoma is rare and can fit some be rather aggressive so his team may well look at using aggressive treatment.

    We have a few folks in the group with NK so let’s see if they pick upon your post.

    You could also put NK T-Cell Lymphoma into the group search tool and look at all the post and you can then hit the reply to any of the posts.

    I as diagnosed with my rare skin T-Cell Stage 4 in 1999 so my journey is rather different and so am still around.

    Googling rare types of Lymphoma brings up little or no information that is helpful but try the link below to the Lymphoma Action Site Info page on NK - this is trust worthy information.

    https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma-t-cell-lymphomas/extranodal-nkt-cell-lymphoma-nasal-type

    Always around to help out as best as I can.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi Mike - Thanks very much for getting back to me so soon. I will check out the group search. 

  • Hi again , do have a search around but you do need to understand that all the story’s don’t unfortunately have positive endings. It is the nature of the aggressiveness of NK.

    When is he due to get some information about treatment.

    Where is he being treated, or should au say is he being treated at a Top Cancer Hospital?

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Sorry to hear this, and yes most all published data is rather gloomy. Yet, published data is often out of date and on-going research makes steady progress against the disease. Here is a link to an information page on N/K T-Cell Lymphoma from a stateside foundation. The basic information will be helpful, but the treatment strategies and regimens may be different in the UK.

    www.tcllfoundation.org/.../nasal-nk-cell-lymphoma

    One cancer (PTCL-NOS) 3 times. Two other cancers (Angioimmunoblastic T-Cell Lymphoma, 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12 years, 20 drugs, 4 clinical trials, TBI, 1,000 years of background radiation. 5th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.
    Suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us...
  • Thanks very much for responding and recommending the lymphoma action website. I have found that very useful. He has finally began treatment now and has not yet experienced any really adverse side effects although we understand it’s still early days. We are based in England and he is being treated by NHS hospital. 

    Thanks Again 

  • Thank you, I will check out this site. I have limited my googling now as it was causing more harm than good. He has now started treatment which is a positive step. 

  • Hi , do you know what treatment he is getting as this is always good to have when others in the same position are looking in for information in the future.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • It is Ddgp chemotherapy 6 cycles, on the lymphoma action website it said typically treated with SMILE. I have done some research and found studies comparing both of them, Ddgp has showed better outcome which is reassuring. 

  • There is always hope. I have essentially a zero percent chance of being alive after two T-Cell lymphomas and 20Q del Myelodysplastic syndrome - simultaneously.  I'll have a look at Lymphoma Action as well. I have been somewhat out of the "treatment loop" since transplant (five years ago this coming Friday).

    One cancer (PTCL-NOS) 3 times. Two other cancers (Angioimmunoblastic T-Cell Lymphoma, 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12 years, 20 drugs, 4 clinical trials, TBI, 1,000 years of background radiation. 5th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.
    Suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us...
  • Good evening poguy18 and everyone else too.

    I was diagnosed with Angioimmunoblastic T-Cell Lymphoma last year. CHOP chemotherapy is now complete and I am in remission and I will have stem cell treatment in the next few weeks.

    Reading all your posts has made me realise and appreciate that there are lots of people in a much worse situation than I was. When I was diagnosed I remember thinking 'why me?' Now I think 'why not me?'

    I wish you all well during your journey and beyond and thank you for sharing.

    Fadz