Hello, my name is Jack and I would like to introduce myself. I am 73 this year and have a beautiful wife, two great grown kids and four grand-kids, ages 12, 7, 4 and 2 years.
In 2013 I had a PSA level step change which had been trending upward from the previous year. A needle biopsy indicated T1 prostate cancer with a Gleason score of 8. My PSA never went above 3.8. We decided to do a Da Vinci radical prostatectomy.
Subsequent blood testing indicated a low PSA level but not undetectable. So that was followed up with 8 weeks of radiation therapy of the prostate bed. After about a year my PSA and testosterone levels started to rise again and was treated with Firmagon/Lupron injections. These injections controlled the the PSA/testosterone...until this year.
My testosterone level remained unchanged and in check but my PSA has risen to 1.2.
A P.E.T. scan this month indicated that the cancer has metastasized on my 11th rib on the left side. The course of treatment currently being discussed is Provenge immunotherapy more than likely followed by Xtandi or Zytiga.
The fact that the cancer had metastasized kind of took the wind out of my sails. I think finding this site and support group is a blessing because upon learning of the metastasis my anxiety level went through the roof and reading the journeys of others and hearing of successes has somewhat calmed me down. I also realize there are no guarantees but I am determined to fight on.
I will post future developments as they occur.
Thanks,
Jack
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Cactus-Jack
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Welcome to the elite club, of which no one wants to belong too. The men and suppport here is amazing. I am just about 14 weeks into my journey, this wasn’t suppose to happen me.
A lot of very very smart men here, TALL_ALLEN is a wealth of information!
Do not panic, take a deep breath. Know you can come here anytime. Love can lift the darkest of any clouds is what I have learned..
Thanks Dean, in just the few days I’ve been on this site and group I have already found it uplifting. Agree on Tall-Allen. Your response is greatly appreciated!
FYI, if you search for "provenge" in the search box at the upper right, you will get a variety of posts/replies from about 7-9 months ago concerning Provenge experiences. Browsing them may help you formulate any questions you may still have if you and your doctor continue to think about this early treatment option.
"Mick Folie" AKA Cactus Jack the famous WWE Wrestler was a real fighter and survivor too this day so will you my Brother. I look forward to my daily reading of this site and joining in on some of the conversations. We are all in the same boat here and constantly plugging the holes in it. The knowledge and Brotherhood is priceless as you will soon see.
In the Prostate wrestling ring in our corner "Tall Allen" would wear our Championship belt along with several contenders. Keep a positive attitude cancer hates that. Never give up never surrender. Leo
This sight offers a wealth of experience, support and knowledge on just about any prostate treatment globally. Everyone ones journey is unique but knowing options helps you communicate and plan a course of action with your oncologist.
My journey started 4+ years ago at 55. Gleason 4+3=7 spread beyond the prostate bed and seminal vesticals. I was moved to stage 4 castrate resistant 2 weeks ago and still feel that I have a number of years in front of me. So many new treatments and combinations of treatments gives us all hope in beating this beast.
You’ll have some tough days but keep active even when you don’t feel like,
enjoy life, and share your concerns with others on this site.
Jackpine, Thanks for your encouraging support. I too feel that remaining active is extremely important. I think it was Einstein that said life is like riding a bicycle, one must keep pedaling to move foreword, if you stop moving foreward you fall down.
You are doing great if 2013 you had gleason 8 and today your psa is low with only 1 rib met. Your plan of attack sounds good with Provenge and Zytiga. If it were me, I would hold off on Chemo until you run the course on all other drugs.
There is an excellent clinical trial running at UC Davis for LYNPARZA (Olaparib). All you need is 1 met that can take a biopsy during and after the trial. You dont have to have the genetic match for optimal effectiveness of Olaparib. Olaparib has been working somewhat OK even if there is not a genetic match. If you have a match, it works even better. You will still get the Olaparib or both Olaparib and Cediranib. (Cediranib constricts blood vessels to tumors to prevent tumor growth). I dont know where you live, but this is a good one. Perhaps see if anybody else in your area is running this trial.
PHII-163
Clinical research coordinator: Daniel Robles - Ph: (916) 734-8291 / Pager: (916) 816-7251
A Randomized Phase 2 Study of Cediranib in Combination with Olaparib verses Olaparib Alone in Men with Metastatic Castration Resistant Prostate Cancer (NCI#9984)
After completing Provenge and Zytiga as your doctor has recommended, it it were me, I would consider either that clinical trial, or consider promptly radiating that bad rib to prevent that spot from running amuck to other bones. Once in the bone, it spreads fast. You have to stay on top of this problem. I have experience with bone mets, and mets are a difficult battle to win. I am also a gleason 8 from 2002.
Hey Cactus Jack, Dr Paraminder Singh now at Mayo in Scottsdale is the PC specialist that made the initial correct calls for me . Do as many good things for yourself in addition to whatever treatments you receive. If you don’t have a PC specialist , Get one.Dr Singh saved me.. Good luck and stay strong.
My urologist has me seeing a pc specialist team for this second battle. I have great confidence in my urologist, Dr. Bernard Gburek, as his initial diagnosis in 2013 and the specialist he has me seeing gives me the same level of confidence.
In 2013 I has a normal size, smooth prostate but an upward trending psa caused his recommendation for a biopsy. Highest pre surgery psa was 3.8.
Thanks for your support, I appreciate your response and encouraging words.
I was born and raised in Riverside, IL; however , I have always loved AZ. On a number of my visits I would buy property there in hopes of someday getting out of the nasty Chicago weather, but my wife always refused to move since she doesn't do 'warm' as well as I do. Once owned land in Carefree (Desert Mountain), Sedona, Arivaca, Kingman, and still have 160 acres up in Holbrook which basically has little value since the power plant project has been scraped. Now I live in Thailand by myself!
Speaking of cacti, I am a 'cacti/succulent nut'! I have hundreds of them on my balcony and I even brought a baby Saguaro here that I purchased from a nursery somewhere up on Bell Rd. I have had it a year now and it hasn't even grown one millimeter; however, I believe it is still alive. Taking them out of their natural habitat I guess is not the best idea since it is my understanding that the only place in the World that they grow is the Sonoran Desert.
Getting back to PCa, I am currently experiencing encouraging results with the use of transdermal estradiol gel (you can find my history in previous posts if you are interested). My best to you and keep in-touch, Ron...ronpitelka@yahoo.com
Moved to AZ from CA in ‘02 with a job xfer and decided that this is the place we wanted to stay when I retired. Lived at Legend Trail for a few years (near Desert Mountain) and moved
over to the west side in ‘06.
Good luck with the Saguaro, tried one in CA once with no luck.
Have a friend on Koh Samui and have traveled to Thailand in ‘04. It was a great adventure in a beautiful place.
Chicago! My kind of town.. good that you love the cacti. We spend most of my year 25 miles from anytown in a giant Saguaro forest. , Thus my photo.Arivaca is a gem. I gave my big brother a 10 inch baby saguaro 10 yrs ago while he lived in Mississippi, he still has it inside now in Wyoming. Bet Thailand might be ok. They grow so slow, it’s hard to say. Have not myself done much world traveling but Thailand is top on my list. I ve heard that the food , people ,and culture are wonderful. I have a petrified wood 2ft high slab that in picked up 15 yrs ago from an old guy in Holbrook. Good luck on your journey.. peace..
Love your profile photo! My little Saguaro is only 6 inches tall and is supposedly about 20 years old. I'm very surprised that your brother's is still surviving after 10 years residing indoors in Mississippi/Wyoming. According to everything that I have read they are very complicated creatures with specific requirements that are difficult to provide outside of the Sonoran Desert. Temperatures, precipitation, humidity, amount of sunshine, elevation, soil conditions, and even latitude are all factors which dictate their existence.
Thailand has been an agreeable 'venue' for me for the last 13 years; however, there are things that I would love to change like, 'lack of respect for the environment', land ownership, work permit laws, and driving habits just to mention a few. I do enjoy the warm climate and sunshine MOST days of the year, living on the ocean, great variety of food, friends from all over the World, relatively low cost of living, no property taxes, low condo HOA fees, and affordable health care which is a big factor for me since Medicare doesn't pay for anything outside of the US. My PSA, E2, T, and Alk-Phos blood tests are $25 USD.
If you or anyone in our 'club' ever make to Thailand, please don't hesitate to look me up; I'd enjoy spending some time with y'all.
Best wishes to everyone, Ron [ronpitelka@yahoo.com]
Thanks j-o-h-n ! A man after my own taste of music. You never disappoint. Wife loves that “ Hit the road jack” , don’t know what that says to me , but I like “ don’t come back no more , no more , no more, “ directed at APC. I’ve been told recently that there can be 2-3 million pc cells hiding inside of us even if we are all clear on scans and no PSA. charming thought, don’t come back no mo, no mo. I highly recommend the movie “Ray “ to anyone that hasn’t seen it. “lean on Me” who can say more. I spent 53 yrs a bachelor , wed now 3 yrs. Inthank god that I have somebody to lean on. My prayers go out to those who face this journey alone.
Everyone of us who has been lucky enough to have good results with initial treatments know the feeling of waiting for a return .Soory for that rib met but as you say others have hit it again with success . I feel we all go Thru chapters of APC. There are Many variables in our different paths..but we all can relate to each other’s plight. You can knock that met back. When you do I will celebrate because that fares well for me and others that may follow the similar paths of treatment once needed . I’m routing for you.. take care.🤙🏽
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