Feeling a little lost:(

Hi David and welcome to the site though sorry to see you joining us, T cell lymphoma's are much rarer than B cell types, that's why this is a quieter group there are some good information sheets on this site and on the Lymphoma Action site which is a small lymphoma specific charity. They also run a buddy scheme where they link you with someone who has the same type of lymphoma where they can if you feel that may be of benefit. These early days are the hardest because you have part of the picture but not the full plan. Once you get that you will find you have something to work with and start to know better what to expect. Chemo is not nice but not as bad as we first fear and the staff are very good at talking patients through the process. Keep a list of all you questions and take them to you consultant meetings and never think a question is too daft to ask, they understand and know.

I had a different type of high grade B cell and had 8 rounds of RCHOP, any questions just ask and I am sure Mike The Highlander who is a fellow T cell patient and community champion will be along to say hi.

John 

Hi David111111 and a second welcome to this little corner of the Community. Sorry for not picking up on your post sooner but my Computer has been playing up.

As my friend johnr has said I have a different type of T-Cell NHL. Although different from your type of T-Cell but I do understand the various treatments rather well having been on my journey for over 22 years.

The noise between your ears in these early days can be hard to control as you try to come to terms with the word cancer but you may find this link helpful cancer and your emotions....... the one thing I will say at this early stage is that on the whole Lymphoma is very treatable with great results.

David111111 said:

expect some serious chemo

Your chemo will most likely be a different mix of drugs from the ones John and I had as its all about targeting your condition and even If we line up 10 people with the exact same condition and on the same treatment we would get 10 completely different stories.

My chemo treatments were rather full on, being in hospital for 5 days on my IV 24/7 for over 120hrs for 6 cycles........ but in saying this, I actually did ok, not a walk in the park but all very do-able.

You can actually see some of our stories by hitting our Community names and looking at our profiles.

This link will take to to the Lymphoma Action site that John has highlighted where you will get some very good information about Extranodal NK/T-cell lymphoma.

You can also use our Online Information and Support Section to search for information - one very important thing NOT to do is random Google searches as you will get a 1000 answers and only a few may be correct and up to date.

You can also search the Community posts but putting Extranodal NK/T-cell lymphoma into the search tool  near the top and look through the older posts and as always you can hit reply and see if the folks are still looking into the site.

It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear. You may also find our Ask an Expert section helpful as well.

Talking to people face to face can indeed help a lot but during these strange times it’s not that available but do check to see if you have any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area and as John has highlighted Lymphoma Action, a small but very active UK Lymphoma Specific Charity have lots of good information, videos and run regular regional online Lymphoma support groups and indeed a very great Lymphoma Buddy Service.

But we are here to help and answer questions at any time.

Thanks for both of your reply’s, its very much appreciated. il check out the links