ks

[Guest guest]

Since my post on this subject, I have contacted my doctor by email. I

think it is important to share his response. He has been treating HIV

for at least 20 years and is pretty expert in the DC area:

" Your immune system is doing well and you are not at risk for KS.

We really only see that when people have very low CD4 counts and high

viral loads. A virus is involved, but it has to flare in the setting

of a bad immune system. The two times that I have seen KS in the last

8 -10 years have been in people who didn't take there meds and then saw

their immune systems go downhill. Once they resumed meds the KS

improves, although one person still needed chemotherapy. Take care. "

I want to thank those who replied to my question. To correct one

thing though. I work in community service, giving support to guys who,

due to their diagnosis, have lost much of their will to live outside

their homes, to go for their treatments and, in some cases, to live. I

have been doing this for about 5 years asnd this is the first timer

I've seen this.

I WILL NOT HURT HIM IN ANY WAY AND WILL NOT TREAT HIM AS A PARIAH

[Guest guest]

Hi Ron,

I have to disagree with your doctor in one specific case. I’ve

had HIV for over 20 years, always had high CD4 counts (around 1000) and I

developed an encapsulated KS lesion on the bottom of my foot. It had to be

removed surgically.

This does NOT contradict what your doctor advised you about your

relationship, but there are some weird cases of KS showing up.

Bob Munk

From:

[mailto: ] On Behalf Of Ron

Sent: Thursday, April 24, 2008 10:02 AM

Subject: ks

Since my post on this subject, I have contacted

my doctor by email. I

think it is important to share his response. He has been treating HIV

for at least 20 years and is pretty expert in the DC area:

" Your immune system is doing well and you are not at risk for KS.

We really only see that when people have very low CD4 counts and high

viral loads. A virus is involved, but it has to flare in the setting

of a bad immune system. The two times that I have seen KS in the last

8 -10 years have been in people who didn't take there meds and then saw

their immune systems go downhill. Once they resumed meds the KS

improves, although one person still needed chemotherapy. Take care. "

I want to thank those who replied to my question. To correct one

thing though. I work in community service, giving support to guys who,

due to their diagnosis, have lost much of their will to live outside

their homes, to go for their treatments and, in some cases, to live. I

have been doing this for about 5 years asnd this is the first timer

I've seen this.

I WILL NOT HURT HIM IN ANY WAY AND WILL NOT TREAT HIM AS A PARIAH

[Guest guest]

I haven't had KS, but was a co-facilitator of a KS support group here in SF for

about 10 years in the 90's. In the old days, some guys had their lesions

injected with the chemotherapy drug Vincristine which was a painful procedure

and only sometimes worked.

Most were treated with systemic IV chemotherapy: the main drugs being the

liposomal drugs, Doxil and Daunaxome, http://www.atdn.org/simple/daun.html, and

the more conventional but recently approved Taxol

http://www.atdn.org/simple/ks.html. There were some guys who had low dose

radiation, to their feet and to their lymph nodes, but that was more the

exception and earlier than the chemo treatments. Some guys in the group who

responded well to the antiretroviral meds when they became available, had their

KS go into complete remission and totally stop progressing once their viral

loads were suppressed and their t-cells started to rise.

Hope this is helpful.

~

>

> I was diagnosed with KS about 15+ years ago.  I had a few in home chemotherapy

sessions and KS has never returned.  Sorry, I don't remember the name of the

drug only that it was a cancer treatment.  I didn't have any visible or physical

symptoms from the Chemo and it has never returned.  I've been on various

medication regiments since and have not been below 200 cd4 count since then. 

Not much help but I think it is very beatable now days.

>

> Jeff

>

[Guest guest]

I haven't had KS, but was a co-facilitator of a KS support group here in SF for

about 10 years in the 90's. In the old days, some guys had their lesions

injected with the chemotherapy drug Vincristine which was a painful procedure

and only sometimes worked.

Most were treated with systemic IV chemotherapy: the main drugs being the

liposomal drugs, Doxil and Daunaxome, http://www.atdn.org/simple/daun.html, and

the more conventional but recently approved Taxol

http://www.atdn.org/simple/ks.html. There were some guys who had low dose

radiation, to their feet and to their lymph nodes, but that was more the

exception and earlier than the chemo treatments. Some guys in the group who

responded well to the antiretroviral meds when they became available, had their

KS go into complete remission and totally stop progressing once their viral

loads were suppressed and their t-cells started to rise.

Hope this is helpful.

~

>

> I was diagnosed with KS about 15+ years ago.  I had a few in home chemotherapy

sessions and KS has never returned.  Sorry, I don't remember the name of the

drug only that it was a cancer treatment.  I didn't have any visible or physical

symptoms from the Chemo and it has never returned.  I've been on various

medication regiments since and have not been below 200 cd4 count since then. 

Not much help but I think it is very beatable now days.

>

> Jeff

>