New here - Low Grade MCL NHL

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Hello

Just joining in here. Hope to hear from similar people to me?

I am only a couple of weeks in and not coping very well at the moment if I am honest. I
got myself in trouble Googling and was told not to by two Consultants but I couldn’t help it as I had to wait three weeks between results and meeting my Team

It would be wonderful to hear from anyone who can shed some light and hope?

Mike The Highlander has been amazing and puts me to shame with what he has been through but he said to reach out so I’m trying.

Thehighlander 1 month ago

Hi again BIDDYMOO .....and welcome to this corner of the site......... do remember that this group basically covers most of the 60+ types of Non Hodgkin's Lymphoma....

At the moment I won't add anything to this discussion but THIS LINK will show others looking in our ongoing discussion over on the Mantel Cell Lymphoma group.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

BIDDYMOO 1 month ago in reply to Thehighlander

Hi Mike

Thank you so much for helping me. I am extremely grateful.

po18guy 20 days ago

So sorry to hear of the state you are in. I received a "poor" prognosis in 2008. It dropped to "extremely poor" in early 2009. It dropped again when the lymphoma arrived for the third time. It dropped again when the original lymphoma mutated into different sub-types. It dropped again when that second lymphoma relapsed. It dropped again when I developed a marrow cancer from years of treatment. I took no notice of the prognosis, which they were completely unable to provide. I focused on the challenge, on the struggle. I knew that life was worth living, and thus it was worth fighting for. The love of many around me was proved during those years. Love saw no burden. Love did not count the cost. That love gave me hope and hope does not disappoint.

______________________________________________________________________

One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

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