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Lymphoma - Value your opinion; will this lymphoma kill me?
Aug 29, 2002

Hello Dr. Dezube, Thank you for the wonderful service you provide on this great web site, it has really helped me over the past few months. Im a 32 yr old male diagnosed HIV+ earlier this year. My initial CD4 count was 84 and 280,000 viral load. I was diagnosed with esoph. candida and treated succesfully. I started Triziver in May. One month later I was admitted to the hospital with severe bleeding from my rectum. They found a small hole in my small intestine and performed emergency surgery on me and cut the small piece out. Biopsy found ulceration within the small intestinal mucosa. Also "within the ulcer bed, large cells with prominent viral inclusions consistent with CMV infection". I was put on Oral Ganciclovir (negative test result for retinitis). I healed from the surgery "miraculously" fast, I was up and about within 2 days and went home after 5 days (I owe it to my healthy lifstyle and my youth I guess). The pathology office tested the specimen for Lymphoma because "in one area, a nodular proliferation of large transformed cells that is worrisome for lymphoma" was detected.The case was then forwarded to John Hopkins Hospital where they performed immuno stains. The stains "demostrated a mixed population of B-cells and T-cells, which did not clearly demonstrate a neoplastic population". The ultimate interpretation and diagnosis was CMV Enteritis and focal involvement by diffuse Large B-cell Lymphoma. Since then I have had a CAT Scan and a PET scan done, both have come back completely clean. I show no signs whatsoever of Lymphoma. I work out every day. Full of energy. No night sweats. No weight loss. Voracious appetite and absolutely no typical signs I have read of a person having Lymphoma. My Oncologist regardless wants to start me on CHOP. Since June I have changed my HIV drug regimen because the Trizivir was causing severe Anemia. Now I'm on Epivir, Zerit, and Sustiva. My body is tolerating the drugs fantastically. As of July my CD4 count is 250 and the viral load has gone down to 900, I feel fantastic. Red blood cell count has also increased significantly, now only borderline Anemic. Dr. Dezube I dont want to start on Chemo. unless I absolutely have to. I have worked to hard to get my white and red blood cells to where they are. I dont want to lose them and be open to any infections.Could the Lymphoma have caused the hole in my Small Intestine or was it the CMV. Ive heard different stories from all of my doctors.I am going for a second and third opinion very soon.Is there a way to monitor this thing? Is it too risky to wait? The oncologist said this Lymphoma can conceivably kill me within 6 months. I dont buy that. Not with the great health I'm feeling. Please help me with your opinion, I highly value it. Thank You once again. Sincerely-----Confused in North Carolina

Response from Dr. Dezube

This is quite a decision before you. I am a bit confused because you state that the pathology review from John Hopkins "did not clearly demonstrate a neoplastic (i.e. cancerous) population", yet you write that the ultimate interpretation was "focal involvement by diffuse large B-cell lymphoma ". These two statements are contradictory.

What would I do with my patient?? The bottom line is that if you have a diagnosis of lymphoma, then you should be treated. Lymphoma in HIV patients can be VERY aggressive even if your CAT scan and PET scan are normal. If you are in good shape, which you state you are, then you should be able to sail through CHOP chemotherapy. It's certainly not a pleasant experience, but many patients of mine go down this highway with great success; many of them are in much worse shape than you. The two bottom lines are 1) I agree with your oncologist (I would have given you the same advice) and 2) so much depends on finding out whether or not you really have lymphoma. You mention a 2nd and 3rd opinion. These opinions should send your slides (including immuno-stains) for review. Please write back and let me decide. Good luck.


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