Pleased to have you out there

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Hi, I was diagnosed back in March 2019 with stage 3a. I had Bendamustine and obinitusamab but developed a reaction to B. Changed to CVP and all ok apart from fatigue and itchy skin. 

Remission!!! Then about 6 months ago developed an abdominal pain on my right side. Its got progressively worse and so had a ct.  Found polyps on my colon and cysts on my pancreas.  So now got MRI on Wed and waiting for Virtual Colonoscopy appointment.  I'm really worried i have colon cancer or similar.  Please give me some advice. I can't talk to anyone else. My sister just cries and my husband says I'm OK. 


  • Hi and welcome to this corner of the Community although always sorry to see folks joining us and sorry to hear you are having new investigations.

    I am Mike and I help out around our Lymphoma groups. I don’t have FL but was diagnosed way back in 1999 with a rare incurable but treatable type of skin NHL Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

    Over my 22 years I have been investigated for ‘other’ health issues that were found on my regular scans….. yes it’s scary but for me most turned out to be manageable, treatable and not cancer related……. but some were down to relapse……. but I am 7 years out from my last relapse and 6 years out from treatment and in the longest period of remission I have ever had.

    Advise?……. Until you are told different, you look for this to be a health challenge that can have a simple fix….. and if it relates to your FL there are lots of tools on the tool box.

    Unless someone is in your shoes they just don’t understand ……. and often a ‘it will be ok’ mind set is a safe way for family to deal with the uncertainty.

    Always around to chat ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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