Welcome, Guest. Please login or register.
August 17, 2019, 07:04:59 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 746830
  • Total Topics: 62530
  • Online Today: 303
  • Online Ever: 1421
  • (August 13, 2016, 05:18:44 am)
Users Online
Users: 2
Guests: 263
Total: 265

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Kaposi Sarcoma  (Read 1015 times)

0 Members and 1 Guest are viewing this topic.

Offline bmancanfly

  • Member
  • Posts: 783
  • Medicare For All !
Kaposi Sarcoma
« on: June 20, 2019, 06:00:13 pm »
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.



« Last Edit: June 20, 2019, 06:03:27 pm by bmancanfly »
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline crisbarcelona

  • Member
  • Posts: 46
Re: Kaposi Sarcoma
« Reply #1 on: June 25, 2019, 10:37:05 am »
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.

Offline MadDog125

  • Member
  • Posts: 74
  • Not today,
Re: Kaposi Sarcoma
« Reply #2 on: June 25, 2019, 10:58:06 am »
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.
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20

Offline virgo313

  • Member
  • Posts: 184
Re: Kaposi Sarcoma
« Reply #3 on: June 25, 2019, 01:40:36 pm »
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
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline bmancanfly

  • Member
  • Posts: 783
  • Medicare For All !
Re: Kaposi Sarcoma
« Reply #4 on: June 25, 2019, 06:31:04 pm »
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.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline virgo313

  • Member
  • Posts: 184
Re: Kaposi Sarcoma
« Reply #5 on: June 26, 2019, 12:39:27 am »
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
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline bmancanfly

  • Member
  • Posts: 783
  • Medicare For All !
Re: Kaposi Sarcoma
« Reply #6 on: June 27, 2019, 11:43:00 am »
@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.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline virgo313

  • Member
  • Posts: 184
Re: Kaposi Sarcoma
« Reply #7 on: June 27, 2019, 05:38:16 pm »
Hi bmancanfly,

 ;D 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". ;D. 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 ;D. 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).
« Last Edit: June 27, 2019, 06:05:05 pm by virgo313 »
RVD Nov 2015. VL --> Log 5.32 HAART on 23/11/15
TDF+FTC+EFV / Chemo KS - 25/11/15 - 20/01/16.
CD4 - 4 (3/11/15) / VL - 225,000   ~ CD4 - 65 (7/03/16) / VL - UD
CD4 - 153 (8/09/16) / VL - UD (20) / CD4% -6%   ~   CD4 - 215 (11/03/17) / VL - No Result / CD4% -8%
CD4 - No Result (10/04/17) / VL - UD (20)   ~   CD4 - 455 (11/05/18) / VL - UD / CD4% -14%
CD4 + CD4% (18/10/18) - Dr not going to  do this anymore / VL - To test only yearly. This Sucks..!
CD4 - 472 (10/04/19) / VL - UD / CD4% - 42%

Offline bmancanfly

  • Member
  • Posts: 783
  • Medicare For All !
Re: Kaposi Sarcoma
« Reply #8 on: July 02, 2019, 08:13:23 pm »
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.
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline Valence

  • Standard
  • Member
  • Posts: 4
Re: Kaposi Sarcoma
« Reply #9 on: July 15, 2019, 03:03:01 pm »
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.


Offline Jim Allen

  • Administrator
  • Member
  • Posts: 12,767
  • Twitter @JimAllenDublin
    • HIV Lessons
Re: Kaposi Sarcoma
« Reply #10 on: July 15, 2019, 03:09:50 pm »
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
« Last Edit: July 15, 2019, 03:18:22 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

 


Terms of Membership for these forums
 

© 2019 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.