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One Month on Zytiga

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

Went back to MD Anderson to test my PSA.
February 01, 2012 psa 2.8 stage M1a

February 29, 2012 psa .3

The doctor said that the requirement to use Zytiga that you had to have Chemo first, but they started testing last year to use Zytiga first which was not FDA aproved. In curtain case's Chemo does not work. In this study some patient's have gone 18 months on this drug. It will not completely kill the little monster cancer, but it put the monster back on its heels:)The side of affect have not been bad. Ask your doctor's about it!

I will do blood test every 3-4 weeks to check psa, liver, kidneys,ETC.

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Ralph

This is great news of a drop in such short time. Zytiga fits well in your care and I hope that it stays that way for many years.
I wonder what a guy should do when on remission for long periods on Zytiga. Could one go OFF-Drug vacations?
This is a result to celebrate and I toast with my glass of red wine.

The best to you.
VGama

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

A very tricky word "remission". I think if the cancer is still there, even if it is very small tumor's. There no remission!

Sorry that's the way I see it, but I will toast with my glass of white wine :))

jogger
Posts: 47
Joined: Nov 2009

He's kidding you, guys. He means red wine.

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

Ralph,

I'm very happy for you. That's a great progress report and I'm glad they're closely following you with blood work to keep an eye on potential harmful side effects. Nothing in this fight comes for free.

K

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Ralph

I accept your white wine but your interpretation of “remission” does not fit mine.
Call me the names you want but “Remission” for me is not cure but a status of indolence, and such relates to the period (what ever length it takes) were one can enjoy the freedom from symptoms and care.

The Trick goes a long way but when a guy gets a positive diagnosis for PCa it is hard to find somebody confirming our status as “cured”, independently of the success of a treatment.
Cure is a level by itself ambiguous and probably never existent. It does not obligatory mean that cancer is “inexistent” in our body. We know that the bandit (which ever face it takes) is part of our aging process and that it is asymptomatic in the majority of the population.
You may inquirer with your doctor what would he recommend if you get and stay in remission during a period of two years (as an example).

I sincerely want to see you on REMISSION and free from the drugs and the side effects. Till then let’s enjoy our wines.

Best
VGama

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

As my Doctor said that this medicine will work up 1-2 year's , or not! It could be 4-5 months and the tumor's will start growing again. They are still there trying to out smart the drug that i'm fighting it with. It will mutate into its next form, so this drug does not see it. Remission no, as long as there is one PSA mutated cell in my body. People in this world think, if you use the word remission, your cured! NOT,

I think i have a better chance to live longer, and with less pain or worry. I still have that cloud hanging over me. :)

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

What else?

I do understand you. I agree with your way of seeing it.
Let's fill our glasses and enjoy this moment of celebration.

VG

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

VG,

It must be my PTSD, Which I'm joking! Agent Orange has cause a lot of grief. the prostate cancer, heart attack's, diebetes II, Peripheral neuropathy and other problems are starting to happen. I'm the youngest 61, and brother and sister are very healthy, but I'm better looking.:-) Vietnam was bad enough, coming home to country that wanted to forget us, and 25 years later in the 1990's I started getting sick. Thing started changing besides getting old. I did not find out until 2008 all these problems were related. Of course I was in best area they spray over there. Well maybe a little mad, but not PTSD

Beau2
Posts: 245
Joined: Sep 2010

Ralph,

I'm sure that I speak for many Americans ... You are not forgotten.

Samsungtech1
Posts: 350
Joined: Jan 2011

You got to admit it is ironic that we survive, and myself personally have never worn a watch, or really had a bad day until prostate cancer. Mine metastisized as soon as it started. Doctors kept telling me it doesn't go to lungs. Told me it was smoking, eve. Though I quit in 1985. Anyhow they did a big cut biopsy,painful, and it is still prostate cancer. Watch out for doctors with opinions.
Had radiation for bladder, and now getting radiosurgery, for lungs, and hormonal therapy because my oncologist says it is going for the brain. Suppose to get my injection and pill on Monday, but to tell you the truth I just do not know. I will take the rads but the side effects of hormonal really worry me.
The VA released a study saying average survival for metastic prostate is 2.88 years. NIH says it is rare for anyone to get past 5 years. My rads doc agreed with NIH.
I am finishing year 2. So isit worthnthe side effects crippling me, I got ischemic heart disease and a stent last year.

I wS in an outfit called redhorse and we used agent orange like a monsoon rain. Hearts and Minds, got to love it.

Look on the bright side we got forty good years. Better than alot of guys. Except for the VA trying to mess with me I figure its been good, don't really want to leave, but do not want to be a cripple,bedridden, with tubes and stuff.
VA just had me do a reevaluation. Sick puppies.

Mike

Ps, good luck, you never know. You made it through the ****, you never know lightning might strike twice.
Going to the VFW for Friday dinner. Take care.

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

I'm praying that you have hope and you trust God to help us through this terrible time. The Prostate cancer has no bounds in our bodies. A lot of people will die from brain,lungs,liver,bones cancer and it was from prostate cancer. They never knew it.

As for VA, and their Hospital, it's pretty bad.Yes it****! But yesterday went to their HEME-ONC clinic to see if help me with my drugs like Zytiga which is $$$$. They said yes.????
It does not make sense, because the blood pressure meds they give me are not the right MG. I have to cut them in half without a break point. That's so cheap!! I bet you the Congress gets the right size.

The MD Anderson Doctor's have given me about 3-5 years right now. I started this journey in 2008 and it has been almost 4 years. I consider that will do the 5 years and then some.

The Hormonal therapy is biochemically castrate, Sex will not be there, it's gone, no mojo, maybe hold hands, maybe dance, maybe injoy life, because time is priceless. The Hormones are very important in stopping the food source to the prostate cancer cell!!! Then drugs like Zytiga actually go out kill the psa prostate cancer cell using a cell called the T-cell. Now the side of effect of Zytiga is not so friendly, but its better than pushing up daisies!!!

Samsungtech1
Posts: 350
Joined: Jan 2011

Was your cancer metastict to start with or how did it go? Courious, because havenot met many people, on forums, that started with metastic cancer. Another problem I have is my PSA does not work. They told me Iam part of the 10 percent, also part of the 10 percent whose cancer went to organs instead of bones.
Once I start the hormonal therapy, if I do, except for CT scans, and pet scans they have no other indicator. I have been getting ct, and pet scans every three months. I extended them to six months and of course the tumors doubled.
Hope the meds work for you. Good luck with the VA. I got into it with the PA who did the biopsy and went to regular docs since.

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

Up to 2007, I had normal PSA .01. In the first part 2008, I started being tired and sick. In August 2008, I did my physical and found my psa at 6.8 and my primary doc said I have prostate cancer. Also in august went to Urology and found 7 out of 12 were gleason 4+5, He recommend removal of the Prostate. I went a second Doc for this opinion and He said i was ugly too. So remove the prostate in Oct. 2008. the psa went to .2 in Jan 2009, by may 2009 it was up 1.0. Did the next thing radiation in August 2009. Dec. it was .4 psa.At that time Urologyist told me that he had not got clean margin's in the nerve and vascular. By april 2010 it was back up to 1.0psa. Off to MD Anderson to do ct scan, bone, all the test. They found it metastict in my Lymph nodes in the pelvis and clear every where beside that. Start hormone in May 2010 and this was the time I found out about Agent Orange. I'm now 340% with VA and at T&P 100%.I had to quit my job in August 2011. I sick from the Cancer medicine and had Peripheral neuropathy could not walk from the pain. Here I'm in 2012 with my psa .3 and holding. Zytiga kick butt!!!

All prostate cancer if in the lymph node's can go to brain, lung, liver orr bone. Don't understand why the psa is not important?

Have the Ct scan shown anything?

Where are you going to get help?

What is your PSA?

Samsungtech1
Posts: 350
Joined: Jan 2011

My PSA went from 4.2 to 6.4 in six months. I went for a biopsy and had gleason 4 + 4. VA PA was an ass. I had already met with a civ urologist and he had already booked a table before my scores were out. He gave me options and I chose RP, but cancer had spread to vessels and bladder neck. Had rad 37 times. A
I went to say my goodbyes to children living in Denver and friends in S.F. When I got to Demver, after the second day my lungs caught on fire. I figured age, and altitude. Went to S.F. Andlungs still burned. Got back and saw urologist and he said probably an embollism. I went to emergency, on my own, and asked for a chest x ray. Doc told me she had to do a CT scan. Came in and said numerous nodules in both lungs. My urologist and cancer care co ordinator both had spent the last six months telling me it never went to the lungs. Anyhow I saw told that even though I had quot smoking in 1985 it was probably lung cancer. They tried non invasive biopsies, but finally went in with his hand. Prostate cancer. I should have been betting. I would have made a foetune.
My PSA currently is .01. Not bad except for the fact that the nodules in mylungs just doubled in size.
Tomorrow I go in for my third treatment of radiosurgery, and then an hour later I meet with my oncologist and I have to say yes or no to hormonal therapy. I love my oncologist. He is intelligent, caring and terribly smart. I feel he is trying toco-ordinate the hormonal therapy with the rads. So I can catch a break. All this started in June 2010. Since then all I have know is surgery, or radiation., or recuperation. Now it is serious, but to be honest I do not fear death, but I hate pain, and I hate drugs. So tomorrow should be i teresting. My mind is saying no to hormonal therapy. I have degenerative joint diseasein every joint in my body. My lumbar is gone. Hormonal therapy is going to make mea cripp,e, and that I will not allow.
Iam undergoing treatment at Riverside in Newport News, VA. My stent was done by their competitors at Sentara. They did not even do tests. They set a date for a week later then called me and told me to come in two days later because they thpught I was a goner. I told them to forget it and waited a week. I was lucky. I had a blocked LAD. First one in my family with heart disease, my dad got prostate cancer, but he was 80.

I really hope that drug works for you. Everyone needs to catch a break. Hopefully this is yours.
I am doing some alternative things and will probably stay with that.

Good luck! Happy ST. Patricks Day.

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

If I don't talk about it, I will go crazy! With your psa low at .01, maybe Hormones are not the answer. BUT if the prostate cancer is in your lung's. Its getting food from somewhere and the hormones " lupron" keeps the testosterone down, because that is a good food source. The hormonal therapy is not that bad, i have been on it for two years. I have hot flashes and I don't look at women as much, but let get one thing straight. I don't look at guy's either. Joint pain is only because of the cancer med's. Even without the Hormones your PC is finding food to go! MD Anderson said that Chemo or Radiadion was not on the table for me. Your probly see great doctor's, but there is new med's "pill's" out there that attack's the prostate cancer no matter where it is, it won't get it all, but it kill's alot of them monster!!!

Radiadion ****! It tore me up 2009 until now!

Good luck to you too:) Happy ST. Patricks Day

No pushing up daisy!

VascodaGama's picture
VascodaGama
Posts: 1592
Joined: Nov 2010

Samsung

Thanks for sharing your story.
I hope you consider HT in your future care. I have been on Eligard (leuprolide acetate, equal to Lupron) since December 2010. The drug has been friendly and mild to me and it has been successful in controlling the advance of the cancer. Fatigue has been the nasty part and libido is gone at the one year mark (but still functioning). This year I am set to stop the drug and hopefully will get a relief from the side effects.

I would recommend you to check on newer drugs available in trials. These are safe and have been effective in advanced cases as yours. You could discuss with your oncologist about a drug called Alpharadin.
Here is the link for details and the trials from the National Cancer Institute;
http://www.cancer.gov/ncicancerbulletin/020712/page2
http://www.clinicaltrials.gov/ct2/results?term=alpharadin

You can read about the results from past trials and check for the successes. Alpharadin (radium-223) seems to be the best drug for stage IV patients. In any case, you should get involved on a trial only if your doctor can assure you the drug. Not to be included in the placebo group.

I am impressed with your story and that of Ralph.
Wishing you both luck and continuing Zeros.

VGama

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

Vas,

thank you for the info. Samsung and I and all of us need input from every source! I will ask My Doctor about Alpharadin

Thank you

Samsung keep the fight, Remember we should never look at our kids and say it checkout time.

We want them to think it's no big thing, We had a great life!

After I came home from vietnam, I told myself that nothing in this world can be as bad and

no one could understand!

But Cancer came along and I found out that there was worst. One thing I have now is the

strengh of God, family, friends.

Samsungtech1
Posts: 350
Joined: Jan 2011

Ralph,
Thanks for your feedback, and for everyone on this board.

It's all good. I play it down with the kids, but I let them know it is serious, but that I am old and death can come from any number of things at my age, 65, so no big deal.

I am getting alot of good advice here. Told the oncologist no ht until I get a bone density test. Get it tomorrow. We will go from there.

Wish you well.

Mike

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