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| Was patient of yours with KS in mid 1995 Aug 24, 2002 Dear Dr. Dezube, I was enrolled in several clinical trials at Beth Israel Hospital in Boston, beginning in 1992. (First was ACTG 175 trial for about 2 yrs and 9 months. Then I started a trial with Merck protease Crixivan, in combo with d4t, but I was on the d4t alone arm (no crixivan)So I was getting monotherapy. It was then that I began to get KS lesions. You saw me under the auspices of the clinical trial unit at BI, with BC as the head investigative nurse. I greatly appreciate the time you spent with me in treating my KS. I then moved to NYC. A lesion was biopsied and confirmed to be KS. They put me in mid 1996 on triple therapy with AZT,3TC and Crixivan, but because I had by then developed hundreds of lesions, a decision was made to give me systemic therapy with Intron A (Interferon Alpha 2b) which I injected myself with twice a day for about 8 weeks. This had a profound effect on my KS lesions,probably the interferon in combo with the antivirals that I was on. However, I developed for the first time in my life a severe clinical depression and feelings of anxiety. And I ended up being hospitalized during a visit to Boston in Beth Israel, first in the main ward, then in the psych ward for a total of 12 days. I must say that those were 12 of the longest days of my life,and I have many painful memories from that time. I clearly was not myself during this time. But I do remember you coming to visit me in the hospital room, to see how I was doing. Although I wasn't responding normally, I will never forget that you came to see me,and how kind you were to me during this period of much confusion. Do you feel, that my severe depression and anxiety at that time could have been an adverse effect of the interferon treatment? I've had ups and downs since then, but luckily I'm still here and kicking.(And have never felt anything like I did during that period in August of 1996. My KS has been in full remission since that time. I am for nearly 4 years now on Sustiva, D4t and DDI triple combo. My viral load kind of jumps around between 1,000 to 16,000 and in between, but my last 2 cd4 counts have been 832 and 880. My 2nd question: is it likely that my KS will eventually return, even though its gone now for 6 years (in your opinion)My name is Jim and I am a classical pianist and teacher. Once again thanks for your help and support during a really difficult time. And If you ever see the nurses BC or SH, please say hello to them and thanks for everything,too! Sincerely, Jim |
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Response from Dr. Dezube
Dear Jim, This was a very moving query/letter. Thank you for walking down memory lane with me. Although I don't necessarily always respond to personal posts on thebody.com, your query raises some important issues. (I removed the names of the nurses as per policy of this website, but I will share your letter with them). The first thing to say is that I remember you very well. I've been seeing patients for well over 20 years and though I can't guarantee that I remember each one of my HIV patients, I do think of many of them quite often. I remember hearing you play piano at one of your performances. Your letter is one of both physical and spiritual recovery. I'm really happy for you. The pain of the 12 days on the psych unit is very palpable. As for your two questions. Interferon can certainly cause depression. Did it lead to your psychiatric admission? No one can ever be sure. Because of this side effect from interferon and because there are so many other less toxic treatments for KS, I rarely use interferon. Occasionally, however, a patient may be quite suitable for interferon. Recent data have shown that low doses of interferon call help KS if the interferon is given in conjunction with effective HIV therapy. Will your KS come back? Although there is no guarantee, if your KS has been gone for 6 years, it is unlikely to return so long as your CD4 count remains high and your viral load remains low. What will happen if your CD4 count were to fall is anyone's guess. Please be aware that even if your KS were to come back, the treatments for KS in 2002 are so much different than the treatments for KS in 1995. Again, you have a special place in my heart. I wish you will on your path forward. |
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