NK T Cell Lymphoma

Keith, I was always worried about that but so luckily it never happened! Other things did but never that!!!!!

Tamsin x

Hello my name is Aston I'm new to this forum I to have got nk T cell lymphoma in my sinuses it is a rare lymphoma but it is very treatable unfortunately for me it has relapsed and just yesterday I started chemo again after about 5 months off chemo I had 4 cycles of chemo on the smile regime and radiation but pls this does not happen to everyone it only happens to some people depending on how you react to the chemo and weather or not your body will recognise the bad cells and kill them so no I've started a new regime which is called GDP which is not as strong and toxic as the smile but it is more targeted therapy to try and really get in deep and kill what is left of the lymphoma with this my plan from the docs have told me hopefully the GDP will get you into remission so I can then receive a stem cell transplant from a donar but that's the battle I'm facing hope all is going well with your mum is it stay positive and strong and she wil kick this in the ass I hope let me know her progress so I can help you with info reactions chemo if that will help sorry I forgot to say I am from and live in Australia Brisbane to be precise I've also got so other info ways to help the immune system to fight and kill cancer hope it is helpful for your your mum and your family.

https://www.youtube.com/watch?v=3fM9o72ykww

https://www.youtube.com/watch?v=oUP9fFUi7lE

https://www.youtube.com/watch?v=byBEYpjx4M4

https://academic.oup.com/carcin/article/35/3/515/2463440

Hope this comes in handy for you I only just found and I'm going to implement it straight anything to try help the process of cure this lymphoma I will do. Thank you Aston again

Hi Aston  and welcome to a rather exclusive group of people but sorry to see you finding us.

I am Mike Thehighlander, I have another type of T-Cell Lymphoma but you have come to a very supportive forum and some great support is going on.

Lets look for your next treatment to do the task and there has been a few Non Hodgkin's Lymphoma folks have posted that they were having GDP with a measure of success.

It would also be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

All the best

Hello thank you very much for that information I'll add something on to my profile now  I sent a few links on the first page I posted on on the ketogenic diet that has been clinically tested by the doctor on the videos he proves that if u eat a ketone diet it put a lot of oxygen in your blood that's helps to fight and  eradicate the cancer cells so that might be of any use to you to help just click on the links above I'm gonna start no to any thing that could possibly help I'll do 

Hi Aston, 

My name is John 

Just over two years ago I was scheduled for routine surgery to remove a nasal polyp. At this point, I had blocked sinuses and no sense of smell. Then one day in late October 2016 I woke up and felt so cold. Couldn't get warm at all and didn't know where I was. After six hours of blood tests etc in my local A&E department I started treatment for sepsis followed by emergency surgery to remove a large necrotic tumour from my right hand nostril. This was followed by radiotherapy for 24 days in November and December of that year. Shortly after this, my care was transferred to Christie Hospital in Manchester, a specialist centre of excellence for cancer care in England.

Since then I've had two cycles of smile chemotherapy followed by remission. I moved onto a stem cell harvest program aiming for a potential cure, but results from a pre transplant PET CT scan showed lymphoma within muscle and fat tissue in a range of areas from my chest downwards. Most recent treatment has been a ROMICAR clinical trial which unfortunately has been withdrawn within the last couple of weeks because the most recent CT scan showed activity in my right lung. Current status is awaiting results of a recent lung biopsy 

Hello John sorry to hear that they found more in other parts of the body hopefully they can treat you properly and start killing the disease it's a long journey but stay positive and stay strong and I'll keep you in my prayers I wish you all the best with the treatment I'm sure you will kick it in the ass mate and get through it I'll send you some links for some quite interesting research if you choose to do it it would proberbly help I'm starting now and anything that can possible cure this disease I'll do it and it's natural ketogenic diet. Hope it helps you.

https://www.youtube.com/watch?v=3fM9o72ykww

https://www.youtube.com/watch?v=oUP9fFUi7lE

https://www.youtube.com/watch?v=byBEYpjx4M4

https://academic.oup.com/carcin/article/35/3/515/2463440

Hi Aston, 

Thank you for your response.

My lymphoma team at Christie Hospital have told me that my condition is incurable (it exists in muscle and fat tissue at a molecular level. When you say NK Tcell lymphoma is treatable, it's a one in a million condition with  on balance has very little Northern hemisphere research. It's a lymphoma which exists OUTSIDE of the lymph system. This on it's own increases the conditions rarity, with most world wide research from Asia. This is not to say that UK investigations are lagging behind Asian teams. Just that less historical information is available above the equator. I'm a born optomist (glass half full, don't you know). It's just I need a "direction of travel" so that I can move forward, if you know what I mean.

Can you please explain to me what what your GDP treatment is. Never seen this regime on line and would welcome any information you could give me. Since Smile chemotherapy has been tried and failed for me it will not be a viable future treatment for me and my lymphoma has changed from stage two to stage four, within four months. I'm resigned to the fact that NK Tcell lymphoma may be with me for the rest of my life. This is not the same as a terminal diagnosis and I'm confident that I will outlive and outsmart this disease.

This isn't a one size fits all condition or treatment pathway. It's unique to every patient and their families. I know that every one says "my wife, husband, children etc are awsome. While this is a blanket statement it is certainly true for everyone in an individual way. I have marginalised saliva, a consequence of which difficulty chewing and swallowing food sometimes. With this in mind I don't feel deep down that changes to my usual diet would be as beneficial to me as they would to other patients.

I'm still positive for a good outcome for my current situation but this could possibly not include the word "cure". Perhaps we will just co-exist together. Me as a host and my lymphoma as an uninvited guest.

John B 

John GDP is a salvage regime used on aggressive types of NHL and has been used on some T cell its the following drugs 

Hey John Aston here there is also a new drug that is proving to be quite successful in killing the cancer that we have it's a trial drug that my doctor was trying to get for me but because it's not approved for nk T cell lymphoma in Brisbane where I live the hospital don't want to give it to me and he even tried getting doctor in his department that a higher ranked then him to get for him but he still wasn't successful in getting for me so he told to make a fund me page raise money to buy the drug my self so he can treat with if the GDP does not work it is a very expensive drug but if it is approved where you live they might give it to you. 

The name of the drug is pembrolizamab is the medical name and the brand name is keytruda and another name for it is pd1 inhibitor there is not the most amount of research on the drug for our cancer but the research that they have has proven that it works there only 6 other people world wide that have been given this drug for our cancer so se if u could get on a clinical trial for that drug