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Treatments

Samsungtech1
Posts: 350
Joined: Jan 2011

If we were looking at this as an effort to cure our disease then it seems like a big failure.
I keep reading about all of us being treated by different HT's chemo, but it seems to me that there is no common thread. They treat HIV with a combo of drugs, they treat bone loss with a drug, mental illness with a drug; but prostate cancer is like throwing veggies in a blender to get your medicine.
I am sure that each of us are unique, but genetically we are all pretty close. Some of us get one type of HT while others get another, and then others get radiation, and different drugs. Then we have clinical trials that give more drugs.
What is confusing to me is that my doctor is in Virginia and chose one type of HT yet doctors in NC , at Duke, use another. Is it because we are different,genetically this does not make sense, or is it because each doctor in each state is paid to use that drug?
It seems to me that all of them do the same thing, I have mever seen a study aboutsurvival rates for all of us on the different drugs, but I am sure the study exists.
We are all so into survival that we seem to accept what they tell us. Maybe we need to ask for a study about theze drugs we get and survival rates from one drug to another.
Just courious.

Mike

nowrest
Posts: 51
Joined: May 2011

good questions. When we changed Oncologists at our cancer center the new one changed my medicine. I asked why and was told it was more effective. When asked why I was not given it before there was no answer from the staff nor the director. So is it random doctor choice?

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Mike,

I sometimes share your frustration. As laymen we frequently look and hope for simple answers to what actually are very complex issues. While the medical community has gained a tremendous amount of knowledge about this disease there is so much we just don't know about all the factors that affect the onset and proliferation of prostate (or any other) cancer.

I wish it weren't so but I have come to believe that NOBODY has all the right answers and that the wide disparity in treatment methodologies put forth by the so-called experts are the result of good, well intentioned people doing the best they can in a very complicated area where so much is a mystery.

Then there are the financial aspects of our treatments which brings into play a whole other set of factors ...

I have come to doubt that there is such a thing as a "cure" for prostate cancer. I think there are many, many indolent cancers that never pose a threat to our health but are often over treated and the management of the side effects becomes a whole other area of study and research. I think those cancers that are not indolent will eventually kill us if something else doesn't get us first and that the whole purpose of much of the treatment today is to curb the growth of our cancers long enough that we live as full and productive lives as possible before we succumb to a more "natural" death like heart disease or a stroke or something similar.

Mortality basically sucks.

K

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Kongo, As person on a drug that called Zytiga that seem to have great control over my prostate cancer, and just coming back from MD Anderson the doctor's were very pleased with the drug and the size of my tumor's. With saying that, the Doctor's re-sured me that this or any drug in the see able future will not be a "cure" which he also stated that I have 2-3 years. That puts me at the expected 7-10 year survial rate. I also think my primary doctor in Dallas might be right that, I will probably die from something else. So it really does not matter, we are all going to die from something and I can live or die with that!!!

God bless

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

In mid 2008 me and a fellow Vietnam Veteran came down Prostate cancer with similar gleason scores. I choose to remove my prostate and he choose to keep his. He started to see a oncologist and i started recovery from surgey. In six months I was back to work with psa @ 0.2 and he continue to work with his psa @ 9.0. Next in 2009 that my PSA started to increase to 1.0 and his PSA was stable @ 7.0, but it had move into this bones. In 2009 we both had radiation, mine was proton was the standard radiation.

By 2010 my psa @ 2.0 and his at 13.0. We both start Lupron in 2010 and at that time I started seeing MD Anderson with my psa going back down to 0.4 and with his being stable at 9.0.

In 2011 we both went on bicalutamide and both of us came down sick in some form. His local Oncologist at the end 2011 move him to Firmagon and MD move me to Zytiga.

In May 2012 we got together and compared notes. He went back to his Oncologist to ask about Zytiga and all his doctor said was it was still being tested, that he might check into provenge. But I was on zytiga since 02/2012.

My point is a some local Oncologist can be stuck in the old ways and chemo or radiation is the treatment for everything. Even when i went to VA hospital that some of their oncologist did not know of zytiga or provenge, But we have a lot of chemo and the word I'm looking for is BARBARIC.

Samsungtech1
Posts: 350
Joined: Jan 2011

The point I was trying to make was; Do doctors treat the disease or do they use medicine that they are paid to push.

Like Ralph was saying his new drug is working, butsome doctors do not even know about it. If all these doctors are on top of their game they should all know which drug is working better than the others. Yet we all get different HT treatments. Why?

Kongo,
As far as death goes, i can not speak for others, but when you have metastic cancer you pretty much know you are going to die. My last radiation Dr., called radiosurgery, told me five years was about it. I had told him about a study theVA released stating that vets with prostate cancer, from agent orange, survived for 2.88 years(white males) depending on race it varies by a few months. It seems like exposure opens up other problems. I had a stent put in last October. Seems I have heart disease. Been active all my life, weight is at low end for my height, but now I have to take pills for my cholesterol, and BP. My cholesterol has never been a problem, but I still take pills for it.
I might die from my heart disease before the prostate cancer can kill me, but death is coming. When there is nothing you can do you might as well enjoy yourself. Selfish of me, but I feel like I earned it.
Really looking forward to Cuba, and the cigars. I smoke Churchills. Can only get them when I go to the Caribbean, but going to the source works.

Not trying to depress anyone, but I just do not understand how they decide on HT treatments, I get my injection next week and think I will check my therory on the nurse. She is the one giving all of us injections so she should know if anyone is getting different HT treatments in this hospital.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

It's amazing that sometimes I will tell people that my prostate cancer was cause by Agent Orange, and they have that look. Oh these vietnam vet's-will they ever go away. With the heart disease, diabetes II, Prostate cancer, neuropathy disease at the age of 61. Frankly don't care what they think. With all my sister's and brother which are older than me and healthy. I beleive in was agent orange.

Your not depressing me, I love it and I hope you are rated by VA at P&T 100%

Me and wife are taking a cruse this fall :-)

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
They gave me 100 per cent P & T in March. Not sure why because I had not told them about the nodules in my lung. Had to go to a Dr. For eval in January and fun part was they told her to check my prostate. I told her to go to the hospital and see what they did with it, but told her did not need a rectal exam. I think the stent did it.
My urologist and my cancer care co ordinator both told me Agent Orange was over stated. Funny thing was they missed the nodule in my lung because they knew it was from smoking. I quit smoking in 1985. Started smoking cigars again, not frequently, in 2010 after my urologist told me it was from smoking. Figured what difference does it make. Anyhow they did the biopsy and it came out prostate cancer. Which if they had read the bulletin they would have seen that this was the exact scenario that the VA said would happen.

As far as people who give you "that look". F them. Funny how naieve I was, but just about everybody I met said they were vets, and I believed them. I thought everyone went to Nam. About ten years ago I finally woke up after reading an article about people lying about Being in VN. Not sure why they did it. I never mentioned that I served there. Told some people I knew at a convention in Vegas and they just looked at me. I finally said I thought everyone had served there because everyone I met said they had. Anyhow people lie. Unfortunately for those of us who actually served there, you have to wonder if this is payback. If so, it works for me. Can not go into why, but it definetly does not bother me.

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

I was rated P&T 100 in January 2012. Last year in September was the sadest month, I had to quit my job, because i became to sick. The medicine and all counter medicine to the cancer took a toll. I change my nickname to Hotflash as i just had another one right now!

Hotflash

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
I missed almost two years of work dur to surgeries, radiation treatments, biopsies, and stent surgery. I owned the company so I couls get away with it, but I am really looking forward to not working anymore. By the time I get off work I am too tired to exercise. I am really looking forward to having time to prepare good meals, set up an exercise program and stick to it.
I plan on volunteering with meals on wheels or something.

As far as hotflashes, not sure about yours but mine seem intense. I get them and I literally have sweat pouring off my forehead. Seems pretty intense to me. I have about twenty to thirty of them a day. I take some medicine that is suppose to cut them in half so if it is working I guess I am saving myself alot of hotflashes, but how would you know if it is working?

VascodaGama's picture
VascodaGama
Posts: 1594
Joined: Nov 2010

My take

Cynically thinking prostate cancer is not an acquired disease but a part of our aging process. To have it may be seen as normal as getting grey hair, lost of vision or skin wrinkles. In some those aspects occur earlier and decide to care for the fact and some prefer to accept it as own karma and do nothing. Treatments for PCa therefore are ways to counter the natural behaviour of our systems.

In my view all prostate cancer treatments do not address the real aspects of cure with“elimination” of cancer but as a meaning of prolonging the life of a patient. No matter if such relates to radicals or palliatives. Practically, only cases with focal cancer have a chance at that hypothetical “cure”, and these numbers are the minority if one judges the facts from the results at the ten year mark post treatment. This is the time when the majority of the cases considered as “cured”, are now confronted with recurrences.
In fact in the late 90th it was common to hear that “if recurrence has not occurred within 5 years post therapy, then the patient was cured”. Nevertheless, at present times with long term follow ups, one can see this assertion to be false but more realistic if considered in a period of ten years long.

With no defined way of cure, it is logical that treatments/modalities to deal with the problem are chosen with bases on past experiences. And those are the ones acquired by doctors in their experimental ways of applying therapies. I call it “guessing medicine”. And what has worked in some does not mean that the “guessing” will work in other.
Accordingly, doctors’ responsibility falls short to any event occurring immediately, so guaranties of cure are not required and instead recommendations with practice safeguarding in mind become the standard.
Many factors could be pointed at as the cause of any suffering one would experience later even if all converges to a cause of a treatment. Evident examples are inner strictures and cancer from radiation, or penile atrophy from surgery, or pituitary apoplexy caused by LHRG agonists, or immunodeficiency disorders caused by chemo infusions.

It is understandable therefore, that doctors tend to follow their speciality/trade association guidelines and such differ from “union to union”. We call it biased opinions but some guys got their hands tied to the standards recommended to them. The “bosses” at the hospitals also impose their view with basis on economics which may oblige doctors in prescribing cheaper medications knowing that there are other more reliable to a certain patient.
And then there is the factor with the malicious liaisons of interests by part of pharmaceuticals.

My advice as a layman is that we all should try to understand and know the causes behind any treatment and only accept it after being satisfied with an answer.
Avoiding any possibility at “cure” is an error. Only time can in fact prove any mistake of a decision but one can accept from the very begging the idea that his/her fight is against its own aging process and by such the war will lead to a defeat.

VGama

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

That to say that prostate cancer is generally a part of aging process. I can not totally agree with that. Asbestos causes shorten the life, smoking, chemical's in our water. To say that I would probally still get Prostate cancer at the age of 57. I don't think so! Now to say i would probally have Heart attack at 65, maybe yes. It matter's which way I lead my life.

"cure" Think I would like to know the truth from my doctor about the amount of time and find away to extend that time on this world. I do not live for death, I live to be with my family as long as I can! I did not like the answer that MD Anderson gave me on time, I went to a specicalist in Dallas and he said I was ugly too! Same answer as MD.

As you know VGama there is NO Silver bullet for our type of Monster!! There is HOPE in the types of drug's we have at this moment in time!

I totally agree that Hospital, Doctor's are sometime driven by money, greed and stupidity. We should aways make sure who we are work with. The old second opinion!

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Greetings, another Viet nam vet checking in with prostate cancer, My doctor explained to me when I started treatment that He could not guarantee a Cure. He also indicated that the treatment methods avail are for the most part are to extend life as much as possible. He also said that my cancer will most likely return at some point down the road.

Ralph, I know what you mean when you identify yourself as a Viet Nam vet, I have had people say that they were a vet, but I questioned it and they quickly backed down and went away, could not even say what unit they served in or where they were in country. I think that there is a collective guilt with people our age that didnot serve in the military during Viet Nam era

I do believe that this cancer had to do with my service in Viet Nam, I was there for 18 months and operated thru out the III corp area. I am 62 years old and other people around me my age donot have medical problems. You couple that in with PTSD problems all my life and high blood pressure the stage is set.

All i am doing now is taking it one day at a time and keeping an eye on this. Hang in there all of you.

Kurt

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Kurt,

In my life since vietnam, in the 1970's and 1980's. Hardly anybody talk of Vietnam. For some reason after the 1st Gulf War, everybody was a Vietnam veteran. I would just ask the simple question where were you station? They would stutter and mummble, you tell the ones that were. I had my military ribbons and all my picture in a box. My kids did not know I service in Vietnam. It was not until the early 2000's did I come out of my Vietnam closet.

My wife said I have PTSD problems, and I have been married 3 times and think I have enough problems. I just tell her to SHUTUP and leave me alone---- just joking --- I have great wife and she love me--- I think!

I was in I corp area in the City of Hue, Camp Eagle 1971 then in 1972 for two month at Danang, Marble mountain.

Ralph

Samsungtech1
Posts: 350
Joined: Jan 2011

Our base camp was at Bien Hoa. We had the perimeter between the 173rd and green berets on the other side. We were combat engineers. Served all thE way up to Dong Hoa ay the NVN border throughout Viet Nam. Scariest thing we did was doing hearts and mines. We had to go out to the vils and put in wells. Because we were engineers we had lumber, which was like gold. The 173rd had the biggest warehouse I have ever seen and it was full of beer. They also had steaks. We traded lumber for those two items.
After the first two heart and mines we had a helicopter squadron next to us and we went to them and built them a beer hall and a shower, commode. They would fly us out to where we were suppose to go and then we would use condoms filled with paint and drop them on either one side or both sides of the road. Then we got the air force to spray it with agent orange. After a month you could go out there without as much danger of ambush.
Who says capitalism doesn't work. It might not have been money, but it was all worth gold. Without the lumber we would not have got the beer and steaks. Then we would not have had the helis flying us out. The air force would never have done the spraying without beer and steaks. Everything works.
Was ther from Oct 66-July67.
Of course the end result was present day me, and some of my buds. I do not regret it. I would do it again. We all have to die. One thing I do not want to do is wonder "what if". I am at peace with whatever happens. My doctor keeps remarking about my sense of humor. Might as well laugh, no one likes a cry baby.

I was wondering if thr Rambo movies might have made all the heroes.

Samsungtech1
Posts: 350
Joined: Jan 2011

Laserlight,
I , like everyone else who went there have high blood pressure. Went to the VA for a test and bp was199/108. Had to stay there three hours. What you need to be aware of is ischemic heart disease. My cancer went to my lungs at the beginning. I was fighting prostate cancer and had it in my lungs from the beginning. When my breathing started getting heqvy I figured it was my lung cancer. Anyhow my gp sent me to a heart guy. His np took my bp and said wow. It was like 188/95. She said surgery, doc said surgery. They wanted to operate the next day. I said I needed a week to get my affairs in order. Anyhow they went in and found my LAD was blocked. They call that the widowmaker. I guess being dumb works.

Make sure you have someone check your heart, if your bp is high you might be looking at this.
Reallya cool procedure. They go in through a vien in the leg and then they have a computer you can watch it on. I guess I got too intense because the dr put a computer in my face. Up until that point it was really cool to watch. No pain, until they take the catheter out and then nurse has to put pressure on you vien and she hurts when she pushes. Other than that noproblem.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Mike I operated out of Bien Hoa, I was with the 1st sig bgde. The microwave towers right by there by the in country processing center for the 101 st Airborne and First Cav unit was where I worked out of. This was located right in the center of the the Bien Hoa base camp. I remeber the Green Beret area. I also remeber the air force planes flying over head spraying junk and being informed to stay out of it. I was there for 18 months. This is good I also remeber the Local people spraying this junk around to control the weed growth, This was done right by the billiet areas where we slept. My blood pressure was at the 150 over 90 . The PX was right down the road. I ran into a security guard at work that was with the Seebe unit in the 1970 to 1971 time frame. Thank you for this information, I have filed a claim with the VA and am waiting now. The blood pressure is controlled to a certain point, but is still a problem, I also have problems with shortness of breath, I have to get the doctor to look into. I remeber all of these units we used to steal sandbags from the MP unit on base, It is good to connect up with another person from Bien Hoa, now I feel that I am not alone

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

Oh, the 101st Airborne. I was with the 179th ASH attach to the 101st. We were step children to them. Our hootches were right next to 175 howitzer's and they had two of them, all night long taking turns to keep us awake. About a week and it was sweet music or I was to tired to care. That was April 1971 to November 1971. I was a door gunner for three months until one night I fell of the top my Chinook working late to get it ready for next day and took a three week vacation at a hospital, never to fly again. They move me to the 478th HH Flying Cranes and work on their engines. I knew nothing about jet engines!

Talking about Hearts, I go and see my heart doctor on friday. He will do voodoo and say I'm ok. I had two stents put in 1998 and one 2000. Beside that its been good. Have to make sure I take heart medicine are my blood pressure takes off. Hypertenion- depression-pain!

Samsungtech1
Posts: 350
Joined: Jan 2011

Kurt,
I was at the other end of the base. We liked it there. When the passenger planes landed the vc had a habit of throwing a few motars and rockets down there. There was no passenger center.you landed and got the hell out of there. EveryOne knew what was coming so it was in and out.

Ralph; we had two sets of 105's. They moved them all the time. They always did a cadence count before they opened up so it would warn you. Only one time did they open up without the cadence shots. I think we suffered more injuries than any real rocket attack. It was a disaster, we were in one of our old hooches. Most of the other hooches caught fire during a rocket attack so we built new ones. It was a quarter mile away. No electricity, water, etc. they forgot to tell them we were there so they just opened up. All us short timers were doing the "run like hell.". Dance. It was a massacre. I tripped over a guy who was having an epileptic fit. Stayed with him. I yelled and got a few more guys to help me. It wouldhave gone good with a few Cheech & Chong jokes in thebackground. So much for the macho vets.

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Mike,

I was there from July of 1969 to the end of Dec 1970. The vc hit us all the time, I lost count, the first 6 months was almost nightly rockets and mortars. We were the Com center on the base, so this was a prime target. We also got hit by friendly fire from an Arvn artillery unit,, 3 dead and 23 wounded, bad part no body qualified for a Purple Heart, due to friendly fire. My hootch was blown apart on both ends. Thanks for the contact. Funny thing I didnot see any Rambo's just men doing their jobs under a bad enviorment. Still waiting on the VA, but I know this takes time.

Ralph I know about the artillery, at Bien Hoa when I was there Thet moved in the 175's
and would fire over our company area. The first time that happened we all got moving real fast. Take care and thanks for the contacts

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

THank y'all for the help**** me bring back these memories!I need all the help I can get!!!!

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
I friended you on this board and was trying to send you an email. No can do. I was trying to get laserlight as well. I think we would all be better if we can communicate off line. I do not want to upset anyone because most of us are right next to crazy so why push it? Anyhow I would like to talk with you and laserlight offline. There are quite a few things that no one whomhasn't been there would know about. The fun times and jokes are what I like. Like the massacre I mentioned. Had to be there, but it was nuts.
Not sure how you guys got rid of rats, but we had a guy, LaValley, who we called the ratcatcher. We use to drown the rats in the drainage ditches that ran throughout the camp. Anyhow the poweras that be said we had to burn them becuse of bubonic plague. My friend Lavalley and I use to clock how long it took the rats to drown. Not sure if you ever did it, but a rat can last for over 8 minutes. We use to get the new guys for alot of money on this one.

Anyhow I friended you, but not sure how this works. Tried to send this to you , no can do. Try friending me and see what happens,

Mike

ralph.townsend1's picture
ralph.townsend1
Posts: 354
Joined: Feb 2012

ralp.townsend1@gmail.com, Sorry that Kongo got his panties in a wad. But he right, this is a cancer site. It does not help for us to connect in how we got this Prostate cancer. When I started talking about vietnam, it was to reasure where I got it.

Our group of crew chief's had a dog called Rat-Rat. We would sit around a fire at night and one guys that were the master of Rat-Rat.He would yell out Rat-Rat and few minutes later the dog would bring a half live rat. Then this guy would throw it in the fire we would listen to it. That dog went away or end up on a dinner plate for Vietnamese family.
I know that's crazy, but it was a sick war!

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
Tried emailing you but it came back. Please check email address.

Thanks,

Mike

hopeful and opt...
Posts: 1362
Joined: Apr 2009

On the left tab of this page, under CSN, click csn email, ....... to email others at this site..on the bottom click write new message.......hope that this works for you

laserlight's picture
laserlight
Posts: 165
Joined: May 2012

Ralph and Mike this is Kurt, I just checked this site, been working, so I go AWOL for awhile my email is camcam990@yahoo.com. The VA sent me a letter saying that they were working on my claim for compensation. I know this takes time, drop me email i check daily. This site has been very helpful for me

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