NK TCell Non hodgkins Lymphoma Nasal Type

Hi Sunshine 1907,   I am not as active as I was but anything I can do to help ask away.

Hi Sunshine1907 similar I am not as active but  I am available to help with any questions you may have. 

Its looking  like my mum has NK t cell lymphoma  which will be confirmed on Thursday with staging and treatment plan. I was just wondering how your wife got on with treatment . And how's she's doing now . I'm trying to steer clear of Google as it has completely  petrified me . Thanks in advance

You have come to the best place to get helpful honest replies , these forums, we were helped no end by the good people on here.       
first off let me assure you that as nasty as the name sounds, NK t cell lymphoma is treatable and good results are the most common outcome from treatment.  Treatment it’s self in Adele’s case was radiotherapy, which works very well indeed, however there is a scary part, because of where the cancer is in the sinuses, the patient has to be help very still, there a head and shoulder cover mask is made to hold the head , neck and shoulder still, by it being fastened down to the treatment table, each treatment takes only a short time, but many people dislike being covered and held in place.  
Adele was in hospital for around seven months, but only received treatment in the last month due to the rarity of that form of cancer , especially in the wilds of the Hebrides, that where your mother is one up, she has a diagnosis, so treatment will begin quickly, which is all for the good. Cancer treatment in the U.K. is second to non.

being in hospital or under treatment can be physically and mentally tiring for all, near to most major treatment centres are “Maggies” centres run by a charity , they are an oasis of calm with former cancer nurses and others employed to help both patients and relatives, if you have not been into one, just call into one local and look around, you will never regret it.

Unfortunately Adele did not survive her brush with cancer and has been gone nearly four years, but right up until the end her treatment was the best that could be, she was just one of the few who could not be saved, so please do not lose any faith in both the NHS and the wonderful MacMillan nurses.   I don’t know where based but she was treated at the Beatson hospital in Glasgow and nothing was ever to much trouble.  My best wishes for your Mothers  speedy recovery. 

I'm so sorry to hear that about your wife .  Yes I've heard it's very rare and it makes things even scarier. Mum has had symptoms  for Well over a year,  but the doctors just kept fobbing her off .. even private . Until this January when an unhraling ilcer appeared in her soft palate.  We are unsure of staging yet but will be told on Thursday.  Andni assume she will be pit on a chemo reg as she's already taking steroids and gout medication . I have heard alot about maggies and will pop into one as soon as I can . I'm trying to stay as positive  as possible but the rarity and amount  of time she's had symptoms  is scaring the life out of me. 

I've heard in some cases radiotherapy can be worse than chemo   but I'm trying not to think about that until chest got through the chemo .

Thanks for replying

Hi again Sunshine1907, I am pleased to see my friend Lee has given you a honest and open reply. I remember back to the months walking along with Lee and Adele through their journey, ironically I was treated in the same hospital as Adele and my wife used the Maggie’s Centre a lot.

It is also important to understand that on the whole these conditions remain very treatable and 4 years in treatment developments is a long time.

I went through the same challenges with regards to face masks two times having radiotherapy but for me the chemo was much more demanding.

Lee remember we need to get that coffee (or stronger) if you are ever over in Inverness but Fiona always talks about a visit to her ancestral home on Barra. Take care my friend.

A positive mind set goes a long way when cancer appears.  As Mike said four years is a long time in cancer research, the treatments get better and better, I sorry it was not all good news, but to look at these things honestly helps.  The best advice I was  give was to write everything the doctors say down, so you can re read when your less stressed , then you can think of questions you both need answering by the doctors.  Good luck to you both on what is not a pleasant journey, but odds are good for a positive out come.    Just another thought in case they have not checked is Adele had very low potassium levels that had to kept topped up.  Any question or even just a rant, that’s what we are here for, take care 

Hi all. I’ve recently been diagnosed with NK-T cell nasal type and thought I’d drop this link on the treatment I am having in Australia www.ncbi.nlm.nih.gov/.../

Sorry to hear of this. I see that the study has produced some rather amazing numbers, considering that it involves NK/T-Cells. Any chance that you or doctor has consulted with Dr. Miles Prince?

I believe he has been in the meetings when my case has been reviewed. I have been with the Blood Unit at Cabrini Malvern since it was first found