10 years ago I had lymphoma, 2 years ago became HIV+ worried I have Hodgkins again
Nov 4, 2011
This time 10 years ago I was 17 years old and half way through my ABVD chemo to treat stage 4A Hodgkins lymphoma. It was in my lungs aswell both sides of my neck and chest. I went on to have radio to my chest and had follow ups for 3 years or so after then lost touch with my consultant because I moved around. Two years ago I found out I had hiv 6 months after my last test being negative. 6 months after my disgnosis I started on meds and I wasnt great about taking them and changed a few times with complications. In March this year I had a bad accident with landed me in intensive care for around 6 weeks. Lets just say I broke a hell of a lot of bones including both legs, hips and 7 bones in my spine. Ive made a great recovery and can walk without crutches. However ive noticed now in the last 2/3 months that I have night sweats often, most nights now infact I wake up with my sheets wet and have to move to the other side of the bed. In the evenings I can become rather hot and have to sit with my top off to cool down, despite the fact that its October in Scotland and I dont have my heating on, and on the reverse during the day I feel the cold. Sometimes I have random itching which is a pest because once I start I cant stop and end up itching all over, thats less often. I know both are symptoms and im worried that I have developed lymphoma again.
A few of my enlarged lymph nodes that I had on both side of my neck went away with my chemo, but the vast majority of them are still there 10 years on with no change. They feel the same to me. About 1 year ago I found a single lump which im sure is a lymph node just under my ribs which has not changed.
My VL at first was 500,000 and that came down when I started my meds but only got down to undetectable levels with my last check up almost 3 months ago, and my CD4 was at my highest its ever been which was just under 500. I used to always hover around 260+
Im aware that lymphoma can come about from being hiv+ but none of my doctors have really touched on the fact that ive had lymphoma in the past then recently become hiv+. Im quite worried about it coming back as ive seen too many of the friends ive made while undergoing chemo to relapse and die. I just dont think my body would be able to cope 2nd time round.
I couldnt find anywhere to post this question as all the lymphoma stuff I read on here does not match with anything that im worried about so this was the best match for where I could post so im sorry if it throws the forum. Any kind of answer back would be of great help and relief for me as im basically sat here thinking ive got it again.
Sorry for any spelling mistakes! And thank you for reading.
Response from Dr. Henry
Your concerns seem reasonable with your medical history and symptoms. I would discuss with your HIV provider and perhaps consider a work up for recurrent lymphoma (seems unlikely but still possible) with examination, blood tests and perhaps imaging and/or biopsy if a particular node or bone marrow is of particular concern. KH
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