my name is Elaine and it’s been a while since I have used the site, this community helped me when my partner Ian was terminally ill with gastric cancer, 5 1/2 years later I myself have been diagnosed with low grade extra nodal marginal zone lymphoma it’s part of non Hodgkins family but it’s not blood related it shows up in your tissue in this case it’s in both my lungs, I do not know much about it and I have been trying not to go on internet too much I am only a couple of weeks since diagnosis; had pet scan which showed it isn’t anywhere else, got lung test on the 27th of January then consultant appointment on the 29th which I am hoping will be to tell me when my treatment is starting, I have been told that normally it would be radiotherapy but I will need chemo. Christmas has been pretty tough as I haven’t been feeling that great and I am on antibiotics for chest infection so just wondering if any one out there has heard of this.
Thank you in advance
Elaine
Hi Elaine and an unfortunate welcome back to the Online Community, although I am sorry to see you finding us.
So sorry to hear about your husband and also to find you on the cancer rollercoaster.
I am Mike Thehighlander and I was diagnosed with a another type of NHL back in 1999 and help out around our blood cancer groups.
Although my rare type of NHL was a rare type of Skin Lymphoma it is still blood related..... you can see my story in my profile. All Lymphomas fall under the heading Blood Cancer as this is where it all starts....... but for me, it never showed in any blood test, it took me a long time to understand that!!
With over 80 types of NHL we dont have groups for every type but can I direct you to this link to our very supportive Non-Hodgkin lymphoma group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.
Once you have joined the group and put up a post you can also put Extra Nodal Marginal Zone Lymphoma (MALT) IN the search tool and see the posts from others with this condition.
This is a LINK to one of the best places to find good and safe information.
Lymphoma is on the whole very treatable but lets get you into the group and connect with others - I will keep an eye open for you ((hugs))
