Kaposi Sarcoma

[bmancanfly]

Hey all.

I've been having regular outbreaks of KS that I have had surgically removed.  I now have a couple of lesions that are not going to be easily removed. My VL is undetectable and my CD4 is decent.  I'm not sure why this keeps happening.

Does anyone here have any experience they can share about this?

I live in a small town and trying to find a Dr with experience with this is near impossible.  I live in the US southeast but I'm willing to travel.  I would appreciate any feedback on where to start to find someone knowledgeable about KS.

I've been making calls locally and am just chasing my tail with a medical establishment not familiar with this situation. 

Really feeling down and discouraged about this.

[crisbarcelona]

Hello, I was reading your post and I wanted to know if you went to the doctor and what did he o she say
I was worried for you and I thought to write some words to know whats going on
I hope you are well.

[MadDog125]

I'm not medically well educated at all.  I do deal with medical transport ops.  Locally we get a lot of paitents flying in to Hopkins for cancer treatments.  I have to imagine they could help with a KS case.

[virgo313]

Hello bmancanfly,

I had KS & treated with chemo, i do not have outbreak after that. I am sorry i could not advise further.

My thoughts is also same as like Chris, What did your current Dr says about these outbreak? Understand that you are at a small town. I think it is important in what causes those outbreak.

I think & hope that ur current Dr would able to refer (must) you to another Dr if he/she is not able to tell you why you are having recurrence. Just keep pushing them for a reply. bottom line is that you need to stop recurrence & not just remove them every time it appear.

Hope you can find the cause & cure soon. Thanks

[bmancanfly]

Thanks for the replies folks.

I'm not sure why I keep getting outbreaks but I know my WBC is fairly low.  Normal range at lab 4,000-11,000.  My WBC is 2,700.  So I'm sure that has something to do with it.  Again my Dr always downplays my concerns about my low WBC.  But I don't think there is anything that can be done about a low WBC anyway, but I'm not sure.  I've had HIV for a long time, so that certainly probably has an effect.  I'm always UD and have been for decades.

I was able to contact a local cancer hospital and it took them the better part of a week to figure out what kind of Dr to assign to me to (I guess they don't see much KS).  They finally set me up with a "hematologist".  Not sure if that's what I need but a least a can see him and go from there.  He can't see me until 7/23 though. argh.

I really feel like I'm groping in the dark.

@Virgo
Do you remember;
1. what drug they treated you with?
2. how long was the treatment?
3. what were the side effects like?

Thanks for your help.

[virgo313]

1. what drug they treated you with?
2. how long was the treatment?
3. what were the side effects like?

Good to know that you have a new Dr meeting soon. My reply for above Q are:-

2. Each time 2 weeks over 6 session (About 2 months time to complete)

1. *Doxorubicin 10mg mix with "water" slow drip into body over 30 minutes
PLUS
*Bleomycin 15mg mix with "water" slow drip into body over 30 minutes
PLUS
*Vincristine 1mg to 2mg slowly inject into body

*dosage varies depending on your weight & height. there is a formula Dr uses to determine the dosage given

3. 1st/2nd session sucks. "feels lots of differences in body". i mean you i can feel "strange" like my testicle has a hard lump, urine smells, weak & other. As chemo session progress i feel better. Last 2 session is just like a routine with not much effect. Each session last just with an overnight stay at hospital. Check in hospital afternoon / Dr run some blood test / Next morning chemo session & discharge

Lastly, KS can also appear internally. I think this needs to check also. internal KS lesions can grow in the lymph nodes and body organs, such as the lungs, liver. personally i am more worried knowing this compare to those that "i can see" (on skins).

Hope this little info/personal experience helps. Hope u get better. Thanks

[bmancanfly]

@Virgo,
Thanks for that detailed response.  That's more info than I've been able to find on my own in the last few weeks of searching the internet.  Very helpful.


If you don't mind me asking where did you get your treatment?  If that's too personal don't feel obligated to answer, I understand.


I feel like the oncologists around here have no experience with KS.  It's pretty rare these days - esp. where I live. 


Wish I knew where to go to find an up-to-date KS treatment facility. I'm willing to travel (as I'm retired) but I don't know who to contact.

[virgo313]

Hi bmancanfly,

  I think your country will have better Dr then mine. I am from Kuala Lumpur, the capitol on Malaysia. Our 1st line is still Atripla & that also it comes with "2 pills". . I am sure other bigger cities in your country will have "more up-to-date KS treatment".

May i ask if you have gone for any treatment for KS? I mean how did Dr treat your KS? Did they just remove KS lesions surgically & were you given treatment again the virus that causes KS? KS is caused by human herpesvirus (The no8 type). Same group like chickenpox (Type No3).  https://en.wikipedia.org/wiki/Herpesviridae

I am not a Dr I i cannot advise correctly. I think to treat KS, first we need to "kill or stop the No8 type of virus" in our body. I think this is where chemo (or other kind of treatment) comes in. After that with UD VL which also means we have immune system working again, these virus will not able to cause KS to appear.

Technically HIV ID Dr would/should be also able to "treat" anyone with KS as i believe they would have seen or read/study cases back in 80's. HIV Dr would know that KS is rather can be part of infectious diseases that can be related with HIV.

I did not see "other DR like oncologists or hematologist" Basically i don't have this privileges . I think my normal DR "panic" when my result shows low CD4 when they could not treat my swollen face & refer me to HIV Dr. As soon as they can allocate me a bed i was whisk to a HIV hospital. Dermatology cut a small piece & confirmed it was KS & the HIV Dr started me with ART & Chemo. I did CT scan before Chemo & also after chemo to check if KS has grown internally.

Maybe.. Maybe... another HIV Dr from a larger city can help? I mean i am sure some with experience from 80's that have seen KS+HIV patients. I dont know. I am sure USA is more "advance" then Malaysia. Your country is giving out as Jim says "Royce Royce" (Biktarvy) while in Malaysia it is still given rusty Toyota engine (Atripla).

[bmancanfly]

Virgo, thanks for sharing your experience.  It helps a lot.

I managed to get my oncology appt moved up to tomorrow.  So hopefully I can get some answers then.

[Valence]

Dear Bmancanfly,

I doubt if I have the knowledge to clarify your situation.  However, one thing "jumped out" at me.

You said your T 4 count was decent or adequate.

However, I  think you also said that you  did not consider yourself well-versed in HIV disease. 

Maybe you think the value is okay when in fact it is deficient.

Please tell us what your T 4 count is, aka CD4 count.

I would also be curious to know what your T 4 cells, as a percent of total lymphocytes, is.  I remember that years ago if it dropped below 14 percent it was considered CDC AIDS.  (Years ago, my T 4 count was under 200 and my t4 cells, as a percent of total lymphs, was down to 14 percent)

Generally, KS, if I recall correctly, did not hit people unless and until their
T4 or CD4 counts collapsed to very low levels.

Your White count is also, as you note, quite low.  I think that is sometimes called "leukopenia."  I  have had transitory dives in my white count but they always came back.  I think a lot people with HIV have moderately low white counts but your white count is substantially low.

Please hang in there.  I am rooting for you.

[Jim Allen]

KS can happen even with higher counts, its just dramatically less likely with higher counts, or more to the point it's usually seen with low counts.  Anyhow here is a basic lesson if anyone is looking for easy to digest info.

https://www.poz.com/basics/hiv-basics/kaposi-sarcoma-ks

@bmancanfly

Hope you have gotten some progress on accessing treatment and, are doing well. Keep us posted and, wishing you all the best.

@Valence

Welcome to the forums, as a new member, it's customary to have an introduction thread of your own so you can introduce yourself to the other members first. 

You can open this up in the  "I just tested positive" section if you are new to living with HIV or in "living with HIV" if you have been living with HIV for longer.

Introducing yourself can be daunting but perhaps you can answer some basics in your first thread such as; How you are getting on? What treatment are you taking, how is that going? What your labs are like etc etc

Thank you

[skeebo1969]

 Hi bman, I've been following this thread.  How are you doing?