Extra nodal marginal zone lymphoma

Good morning and welcome to the Online Community but sorry to see that you have found us.

I am Mike Thehighlander and I am dropping in past from our Non Hodgkins Lymphoma Fourm that I see you have joined.

Just go to the NHL Forum and hit the “Start a Discussion” tab and introduce yourself and your story. Also remember to go to the right of the NHL home page and select how you want to receive emails when someone posts a reply to you.

Posting on the NHL Forum will help connect you to folks who have or are going through the same journey with this condition.

I was diagnosed with my type of rare NHL in 1999 and I am still around doing well so be encouraged.

The early stages of Lymphoma diagnoses requires a lot of tests including scans and yes a Bone Marrow Biopsy to be done - and yes I have had lots of them. These tests are so very important to find out what is going on and how you will be treated. This will take time but in the big plan will not make much difference to the outcome.

The is a blood cancer and on the whole these are very treatable so try to turn the noise down in your head. Blood cancer are not like solid tumour cancer and we have some very effective treatments available.

It would 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 ;)

I will keep an eye open for you over on the NHL Forum.

Thanks Mike. I have found out it is only in the skin and start my radiotherapy next week. I still feel overwhelmed and confused at all the information that appears to be unclear about prognosis.

https://lymphoma-action.org.uk/types-lymphoma-non-hodgkin-lymphoma/malt-lymphoma-extranodal-marginal-zone-lymphoma

the above link explains your type of NHL which is slow growing so try not to get hung up on prognosis, new treatments and drugs are at a peak compared to 10 years ago when I was diagnosed and it was even longer for Mike, since then things have changed massively and everything you are reading re stats is around 5 years out of date. so focus on the treatment and a long remission. 

do post in the group mike mentioned others there have this type of lymphoma and a search will take you to their posts.

good luck

John 

Hi again , now you have a plan so this will move things froward.

As John says, concentrate of what is happening now and get on with your treatment. My T-Cell Lymphoma was a skin Lymphoma and I lived a good 14 years before I had to have full on treatments. I also had a good 35 Radiotherapy sessions on my skin and it was ok, just watch out for dry skin.

Come over and post on the NHL Forum as you will connect with others on their NHL Journey. Just join the group and hit the 'Start a Discussion' tab and introduce yourself to the group. Remember to go to the right on the home page and indicate how you want to receive email notifications when someone answers your posts.

It would 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 cancer journey was rather long.

Woffy I have got the same type so I have sent you a friend request.