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Author Topic: Trying to deal with cancer...  (Read 8377 times)

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Offline dad1216

  • Member
  • Posts: 135
Trying to deal with cancer...
« on: January 06, 2011, 10:04:47 AM »
I have just been diagnosed with advanced prostrate cancer….inoperable ….will have 9 weeks of radiation 5 times a week…also hormone therapy…the cancer has spread to the bones and to the lymph nodes, but at the early stage…I am really having a hard time dealing with this and so worried that with my numbers this could be what does me in…any other LTS been through this
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Trying to deal with cancer...
« Reply #1 on: January 06, 2011, 11:34:26 AM »
Hey Dad,

I haven't dealt with cancer, so I can't offer any advice.

But I wanted to let you know I will keep you in my thoughts and send healing energy to you.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Trying to deal with cancer...
« Reply #2 on: January 06, 2011, 12:44:55 PM »
Dad1216,
Sorry to hear about the cancer. I have had cancer twice. The first was KS in my small intestine, luckily Chemo got rid of it in 3 months.
 Then two years ago had skin cancer. They removed half of my ring finger.

Both times the support of family and friends was extremely helpful. I have to admit I was scared as hell the first time. I tried to stay positive. It is not an easy thing to deal with. But success is possible!

Keep us posted please. Never give up hope. Feel free to PM me any time!

All the Best,
Jeff

 
Positive since 1985

Offline OneTampa

  • Member
  • Posts: 2,096
  • "Butterflies are free."
Re: Trying to deal with cancer...
« Reply #3 on: January 14, 2011, 07:46:28 PM »
Dad,

I wish you best and my thoughts are with you.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline gemini20

  • Member
  • Posts: 262
Re: Trying to deal with cancer...
« Reply #4 on: January 14, 2011, 09:06:50 PM »
Dear Bob,

So sorry to hear this news I've been away for a month and only just catching up.

Sounds like you are going to be in for a rough time over the next few weeks; I do hope you have some support around you. If I didn't live across the ocean you know I would be there helping you out.

I guess what you need to focus on is all the other stuff you've managed to get through in the past e.g. the heart attacks, being off meds for so long - this is just another battle which you have to find the energy to fight.

Obviously there is a fear factor involved, who wouldn't be scared dealing with yet another major health problem but try to keep mentally strong even if your body feels like it wants to give up.

Like Mark I will send you all the healing energy I can muster along with love and prayers.

Take care,

Emma


Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline wolfter

  • Member
  • Posts: 4,375
Re: Trying to deal with cancer...
« Reply #5 on: January 15, 2011, 06:13:09 AM »
Sorry to hear about your diagnosis.  It's one of the few issues I've not dealt with personally so I don't have any first hand knowledge.  I've had several friends make it through their cancer treatments and am sending my postive energy your way.
productivity breeds content

Offline dad1216

  • Member
  • Posts: 135
Re: Trying to deal with cancer...
« Reply #6 on: January 16, 2011, 10:26:18 AM »
Thanks for the well wishes they are greatly appreciated…especially at this time…

I am on information overload…I have for the first time heard a doctor say the word cure….will start out with a triple hormone therapy to stop the cancer from growing…and then in 60 days start heavy doses of radiation…

I started the hormone therapy last week…soon to come will be the hot flashes, and who knows what else when you stop all the testosterone…

I am happy with all the doctors so far…they do blame the HIV for the rapid progression of the cancer…

I did forget to mention that I had my first grandchild…she is 6 months old…my son and his wife are living with me…so I am the full time babysitter….loving every minute of it…

Bob
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline jm1953

  • Member
  • Posts: 255
Re: Trying to deal with cancer...
« Reply #7 on: January 17, 2011, 07:38:04 PM »
Bob,

My thoughts and prayers are with you.  Just got diagnosed with skin cancer and I'm undergoing treatment, but nothing to compare.

Wishing you all my best,

Jeff
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline Sfteve

  • Member
  • Posts: 14
Re: Trying to deal with cancer...
« Reply #8 on: March 31, 2011, 09:56:45 PM »
Dear Dad,

I was diagnosed with stomach/spleen cancer in Dec 1996. I did the rounds of chemo, radiation and surgeries. Looking back at it all I am happy it happened, I am stronger today.

Cancer and HIV/AIDS is a battle only made better by all things that begin with YOU. Get informed and always be proactive. Make sure you eat what works best to fuel your system and never miss a doze of vital meds. Enjoy life as it comes.

As time goes on, big things and issues in life will become small, so small they´re nowhere to be seen. You´ll also noticed people who care about you and those who do a bit less, it´s life. The only thing that matters is how you feel and cope with it. This will make you stronger eventually. Don´t ever give up on yourself. Every life counts and yours matters too.

A BIG HUG!

Steve
Santa Fé, NM

HIV since 1984, Cancer survivor since 1996.
Tcells= 678, Undetectable
Prezista
Truvada
Norvir

Offline dad1216

  • Member
  • Posts: 135
Re: Trying to deal with cancer...
« Reply #9 on: April 01, 2011, 08:29:25 AM »
Thanks Steve for the encouraging words...

So far things are going pretty well...I am finishing up my second week of radiation, with 7 more weeks to go...it is putting a strain on the body, very weak and exhausted...but tolerable so far...

The hormone therapy has been the worst....no testosterone equals no sex drive at all now...the doctor was right when he gave me the injection and said..."say goodbye to your sex life"....I wonder when all is over if I will go through puberty again...lol

I am in good spirits...
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline CaptCarl

  • Member
  • Posts: 1,114
  • Located in the Palinsville subdivision, JesusLand
Re: Trying to deal with cancer...
« Reply #10 on: April 01, 2011, 01:03:29 PM »
Dad-

   I have been through a few round co the Big C myself. However, it was not the type that could be successfully treated with Chemo/Radiation therapy, so I cannot offer you advice on how to cope with that. In my instance, transplantation was the only viable treatment.

  All I can offer you is some well wishes in the upcoming battle, and it will be a battle. Save your energy for the fight, and kick some ass!

CaptCarl
The only thing I can do straight is shoot..

Offline Jeff G

  • Administrator
  • Member
  • Posts: 10,795
  • How am I doing Beren ?
Re: Trying to deal with cancer...
« Reply #11 on: April 01, 2011, 01:26:22 PM »
I have had my rounds with chemo and radiation treatments for stubborn KS , I finally beat it . I'm sure the treatments I had were mild compared to what you are are dealing with so I wanted to send some energy your way and let you know I'm thinking about you , good luck and stay strong .   

Offline Theyer

  • Member
  • Posts: 2,480
  • Current ambition. Walk the Dog .
Re: Trying to deal with cancer...
« Reply #12 on: April 03, 2011, 06:05:43 PM »
Sorry to hear this. I have had treatment twice for Hodgkin's Lynthoma ,the second time only able to complete one half off the chemo. Its was a very rough time. Please feel able to P/M if it might be helpful.
take care
theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline dad1216

  • Member
  • Posts: 135
Re: Trying to deal with cancer...
« Reply #13 on: May 18, 2011, 07:45:25 AM »
I can't believe this....for the last couple of weeks I have battled what I thought was a radiation burn in between my legs...my cancer oncologist kept telling me that it could not be radiation causing it that it had to be related to my HIV...it got so bad that they did stop the radiation and sent me to my ID doctor to deal with what ever was causing it...I was immediately admitted to the hospital...pumped full of antibiotics....had a wound specialist..after 3 days they finally got the pain to a tolerable point so they could treat the wounds...it looked like someone had poured scalding hot water all over my privates and between my legs...oozing sores that were raw...

Well yesterday the oncologist tells me that they finally figured out what caused the sores....it was the radiation...they found out that the radiation machine was set up wrong and that for the 29 treatments that I have had they have been shooting the wrong area...they are not sure if they have even hit the prostate...and they are not sure what damage had been done to the other organs...and that I may have to repeat all the treatments...that it is their fault and how sorry they are that I had to go through everything that has happened...because of this they have set new protocols so that it doesn't happen to anyone else...they told me they had already reported the incident to the state medical board...and that risk management would be contacting me...

I hired a lawyer
23 years HIV+ (Oct 88)
11 years AIDS (March 00)

CD4=83  VL=47,000  (May 2011)
CD4=63  VL=78,470  (Oct 2010)
Prezista..Norvir..Truvada

Offline wolfter

  • Member
  • Posts: 4,375
Re: Trying to deal with cancer...
« Reply #14 on: May 18, 2011, 08:08:20 AM »
That's absolutely horrible.  I'm sorry for what you've gone through and what you still have to because of their mistake.  I don't think every situation requires a lawsuit, but this instance screams for compensation. 

Did they tell you how long you have to wait to start the correct treatment?

Good Luck and take care.
productivity breeds content

LabRat

  • Guest
Re: Trying to deal with cancer...
« Reply #15 on: May 18, 2011, 09:46:58 AM »
So sorry to hear of your hospital's mistakes. I thought that they used a laser to pinpoint exactly where the radiation should target, leaving the rest of the area untouched. This is terrible!

I'm glad that you hired a lawyer...you need professional representation and advise. Risk management will most likely try to smooth things over in order to protect the hospital from a lawsuit.  I'd refer the risk mgt. people to your lawyer.

Hope you heal up soon and by some miracle don't have to endure any more radiation treatments; i.e. cured!



Offline Theyer

  • Member
  • Posts: 2,480
  • Current ambition. Walk the Dog .
Re: Trying to deal with cancer...
« Reply #16 on: May 18, 2011, 11:26:01 AM »
Oh that is awful, the only bit that was not was the Doctors clarity in stating what has happened,I am sorry and wish you all the best in  dealing with your health and legal matters, hang in there all the best
theyer
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline AlanBama

  • Member
  • Posts: 3,604
  • Alabama: the 'other' 3rd World Country!
Re: Trying to deal with cancer...
« Reply #17 on: May 18, 2011, 11:28:15 AM »
OMG that is awful!  I hope you are recovering from these horrible radiation wounds.   My partner had radiation in that same area in 2007, has mostly recovered from the awful effects of it, but has never been completely "the same".   

Hope your attorneys can help you out, and that it will all be o.k.

Hugs, Alan  :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline bear60

  • Member
  • Posts: 4,104
Re: Trying to deal with cancer...
« Reply #18 on: May 18, 2011, 11:33:53 AM »
So sorry to hear this.  There was a case like this at U Of Penn Hosp. not long ago. I think.  Yup..here it is...............
http://articles.philly.com/2010-07-03/news/24966928_1_radiation-therapy-brachytherapy-department-of-veterans-affairs
Poz Bear Type in Philadelphia

Offline BT65

  • Global Moderator
  • Member
  • Posts: 9,846
  • Vegas baby!
Re: Trying to deal with cancer...
« Reply #19 on: May 18, 2011, 05:20:32 PM »
Wow, absolutely horrible!  >:(  I hope you're able to heal, and that your lawyer helps out.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: Trying to deal with cancer...
« Reply #20 on: May 18, 2011, 06:42:17 PM »
Dad,

Just want you to know I am thinking about you, and wishing you the best. This is just unbelievable.


Hang tough----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline OneTampa

  • Member
  • Posts: 2,096
  • "Butterflies are free."
Re: Trying to deal with cancer...
« Reply #21 on: May 18, 2011, 09:22:29 PM »
Dad,

I am so sorry to hear about this.  I hope you recover completely and are able to relax in good health and splendor aided by the high coin you'll get from a lawsuit.

Take care.
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline aztecan

  • Member
  • Posts: 5,384
  • 29 years positive, 56 years a pain in the butt
Re: Trying to deal with cancer...
« Reply #22 on: May 19, 2011, 10:43:50 AM »
That is terrible.

I think it is even made worse because they immediately blame the HIV when they couldn't figure it out.

I hope you feel better.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline pozniceguy

  • Member
  • Posts: 1,175
  • Niceguy Dallas
Re: Trying to deal with cancer...
« Reply #23 on: May 19, 2011, 12:02:01 PM »
so   sorry  for this  super  bad problem     ...medical  errors  cause  lots of issues , many are never resolved..  I hope  your  lawyer is very knowledgeable in dealing with  Medical malpractice......  this  calls  for a long term treatment solution and a major money  settlement......   
be prepared for  lots of BS  about  "extenuating"  circumstances  nonsense....they will claim  HIV as a reason  for  mistake... and extreme outcomes.....   " Risk Management"  is a code  for insurance coverage..... find out what their liability covers and ask for  double that...make it  hurt them.....


really  sorry to hear about this ,  wishing you the best outcomes physically,mentally  and fiscally

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline Sfteve

  • Member
  • Posts: 14
Re: Trying to deal with cancer...
« Reply #24 on: May 20, 2011, 12:05:56 PM »
I hope you are doing well and no long-term effects develop.  The aggravation caused by this unfortunate event should be compensated somehow.

I recall my chemo and radiation days and am glad I was among friends and peers at the hospital where I had worked for many years.

Steve
HIV since 1984, Cancer survivor since 1996.
Tcells= 678, Undetectable
Prezista
Truvada
Norvir

Offline gemini20

  • Member
  • Posts: 262
Re: Trying to deal with cancer...
« Reply #25 on: May 22, 2011, 06:44:14 PM »
Hi Bob,

Just catching up with the Forums after taking some time out and so only just read your recent update; all I can say is that is some seriously big fuck up by someone.

So sorry to hear you have had to go through all that, it sounds horribly painful;  i can't begin to imagine how distressing the whole situation must be for you.

I hope when they resume the treatment someone double checks everything before they start zapping you!

Thinking of you,


Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Trying to deal with cancer...
« Reply #26 on: May 24, 2011, 03:15:21 AM »
Bob,I am so pissed right now, I can't imagine how you are controlling your anger. I'm glad you hired a lawyer.
Try to take one day at a time. I know it's a cliche, but It helped me focus during my cancer battles.
My heart goes out to you! Hang tough man.

A concerned friend from afar!
Jeff
Positive since 1985

Offline meeko

  • member
  • Posts: 1
    • Pozlife
Re: Trying to deal with cancer...
« Reply #27 on: June 06, 2011, 09:03:10 PM »
Hi Dad,

My mother's also diagnosed with cancer on top of HIV.  It's some sort of sarcoma that's so rare that doctors aren't quite sure how to treat it.

She had one ovary removed 3 years ago with the presumption that it was ovarian cancer.  Fast forward to today (4 years later) It's spread to her stomach, liver and her other ovary.  The Docs are thinking about Chemo.

She's scared, but somehow is coping with it. I'm not religious at all, but she says her faith in God has got her through so far.

I hope you too can get through this.

Anyway, I just wanted to deliver some kind words from afar, from someone else who's also going through a similar situation. 

Offline David Evans

  • member
  • Member
  • Posts: 97
Re: Trying to deal with cancer...
« Reply #28 on: June 07, 2011, 10:59:20 AM »
Meeko,

Are you a long term survivor (please read the rules at the top of the LTS forum for an explanation)?

If you are, please let people know your story. If you are not an LTS, then please know that only other LTS are allowed to post in this forum. I'm sure that your sentiments are appreciated, but there are good reasons why some of the forums are restricted and we ask that everyone respect those rules.

Thanks,
David
Moderator

 


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