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tonygfl
New User
Joined: 09 Apr 2008
Posts: 2
Location: North Florida
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 Posted: Thu Apr 10, 2008 8:54 am Post subject: A tale of a Tony |
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Greetings and thanks for existing. Forums like these help people like me through the dark hours of the early stages of cancer diagnosis.
My story: Am a 40 yo HIV+ (asymptomatic, Dx 2003, no meds yet) man. About 7 weeks ago I began having severe flank pain accompanied by loss of appetite, chills, intermittent fevers followed by periods of hypothermia and a sharp aching pain in what felt like the bones in my left shoulder. On visiting the VA for the complaint, a chest X-ray and CT scan were performed. CT revealed "marked stranding of of the mesenteric fat with more numerous to normal sized mesenteric lymph nodes". My doctor wrote it off to my "underlying disease" but also made mention in the report these were signs of Lymphoma as well. After 6 weeks of antibiotics with no upswing in my health, I was sent to my infectious disease specialist who informed me the current complaint had nothing to do with HIV and then sent me for an MRI with contrast. This showed highly enlarged lymph nodes and some spinal stenosis. I have now been referred to a Hematology-oncology clinic (this coming Tuesday) and am having upper endoscopy in a week.
Results to follow.
I am strangely calm about all this, even as I can feel the dull thud of the node under my left armpit plug away.
Cheers,
Tony |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 3966
Location: Tennessee
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| Posted: Thu Apr 10, 2008 9:55 am Post subject: Re: A tale of a Tony |
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Hi Tony. Welcome to the forum. I am very sorry about your HIV status and Lymphoma. I did go ahead and move your post to the Lymphoma from but left a "ghost" of it in the New Members Introduction forum. This way people who visit either can respond to you in one place  .
You have been HIV+ since 2003 but not had any treatments for it until now? Back in the 80's and 90's I was very active with HIV+ individuals and even lead a support group for HIV+ individuals and their families and friends. I know a lot has changed since then.
I will be thinking about and praying for you... especially on Tuesday.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/ |
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tonygfl
New User
Joined: 09 Apr 2008
Posts: 2
Location: North Florida
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| Posted: Thu Apr 10, 2008 12:18 pm Post subject: Thanks for the reply |
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Nope. I still am not on any meds for the HIV part of my nightmare. To quote the Infectious Disease specialist, "HIV is the least of your problems". My "numbers" are good re: HIV. The ugliness is popping up in areas like protein, hematocrit, WBC and platelets. It seems I have distinguished myself by coming up with a completely separate disease, although lymphomas are common with more advanced HIV+ folks.
Go know.
The hard part of waiting is that I am too familiar with the symptoms. I get nervous as I have no appetite and am exhausted by the smallest task. My sweats are not "drenching" though, but I guess one does not need to have all the classics to qualify. Apparently my records have reached the hematology-onc clinic and convinced them I am someone they want to see. Friends with cancer have told me this place is strict in its pre-screening. Not a good sign. Still I have hope. Although I am relatively sure of the path this is taking, the confirmation, strangely enough, will be more comforting than this interminable wait.
Cheers for now,
Tony |
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ChemoMan
Senior User
Joined: 04 Jun 2008
Posts: 141
Location: South Australia
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| Posted: Thu Jun 05, 2008 4:02 pm Post subject: Re: A tale of a Tony |
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Hi tonygfl
G'day from Australia. Sorry to hear about all your health problems. Ive got no Idea how they would treat you with your medical conditions if you had cancer, but its probably the same as HIV- with an extra eye kept out for infections. Medical science has made both your conditions ( assuming you have NHL /HL) survivable, in fact NHL can be cured, so I wouldn't get morose about this.
The worst aspect for me during my treatment were the psychological ones, things like family forgetting you exist or friends who turn their back on you because they are too busy. It made all the other stuff insignificant. So it is important to have some people who cares about you in the background, someone you can trust and lean upon. It also helps to get onto a forum and let off a bit of steam 
get back to us and let us know how you are going.
Cheers and Good luck
_________________
Age 51
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008 |
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