Just thought with all the difficult stuff we have to deal with and read about that it would be nice when we can also share some good news. I just read my results from yesterday's labs and I am still responding to ADT after 7 years with an undetectable PSA. Looking forward to reading good things from others.
All the best.
Have you been on ADT continuously for 7 years?
It's always great to hear good news! I'm only a bit over 8 months since diagnosis, but I just joined the undetectable club after finishing chemo and starting abiraterone. Still have my prostate and full urinary control, ran a 30-minute 5K two weeks ago, and returning to work next month.
I was treated a bit differently than most. I was 54 yrs and otherwise, healthy. My Gleason 9. My doc suggested prostate surgery despite my 4 mets and when it was done I also had 34 lymph nodes removed. He did this because he thought I could tolerate the surgery well and for a host of other reasons. This was radical back then, but more accepted now. I also had some radiation of my left acetablum 2 yrs later for the largest met. I was on INTERMITTENT ADT for approximately 5 yrs and have been on CONTINUOUS for the last 2. For some some of the time that I was on ADT, I also took Zytiga, but haven’t been on Z for more than 2 yrs
Great, your cancer cells are extremely hormone sensitive. I'm hormone sensitive too, PSA 1000+ to 0.02 downward trend for about 9 months. Curious with current studies about why certain cancer cells become castrate resistance.
So how high did your PSA get during vacation? And, when starting ADT, did it always retuned to PSA undetectable?
One last question, what does your doc mean by undetectable?
MSKCC in NYC only measures to .05. If less than .05, they call that undetectable. Yes- each time I returned to ADT my PSA dropped to less than .05.
My PSA was at 44 when I started treatment on June 2012. The last time I went off ADT, which was around 3 yrs ago, my doc actually let it rise a few times til it reached 4.0 or maybe even a bit higher, before starting me back on ADT. The previous 2 times I went off ADT, he didn’t let it climb that high
I was on first level ADT (Firmagon and Eligard) for close to 2 years before becoming castrate resistant. After PSA started doubling pretty rapidly, they put me on Xtandi. I have responded well to X and have been undetectable for about 7 months. I told my doc if I stay undetectable for a full 12 months, Im taking a drug vacation. He seems to think that is a bad idea and might allow the cancer to regroup and attack, but I told him my body needs a break from the relentless fatigue that comes with ADT. Your doc sounds like he is much more onboard with the need to take a break.
I’ve discussed this subject with 3 respected oncologists. Their consensus is that 18 to 24 months should be taken with minimum 1 year undetectable before a vacation. Best studies show a small increase in deaths with IADT vs continuous but too small to say for sure it’s worse. And they started. Vacation less than a year I believe and did not add Zytega. I just started my vacation after 21 months.
Schwah
Good news and hope it continues for you.
Just curious what the decision point was to start ADT again after a break if you were undetectable the entire time.... and why continuous now?
Thanks.
I guess I wasn’t as clear as I should’ve been. Whenever I went off ADT, my condition would be monitored with labs every 3 months and some scans every 6 months or so. After a period of time without meds, which became shorter each time, my PSA would start to rise. It probably took 12-16 months the first time before it started to become detectable. Then my doc would make a judgment call about how high to let it rise before starting me on ADT again. So, fortunately, my PSA has always dropped to undetectable levels when on ADT, but when I would go off of ADT, it would eventually begin to rise
Great news, 7 years has to a record.
I have certainly done well, but have heard of others who have gone way past 7 years
I have gone 5 years with casodex. And now coming up on 7 years, first with zytiga and now with xtandi.
Always nice to hear good news and stories. Especially with Gleason 9.
7 years ADT is good going though but questions the G grade.
I am 3.5 but feel it starts to wear off after 2 of each 3 monthly cycle. Hot flashes reduce and seem to get slight increase in pain during month 3.
Undetectable PSA is great with advanced PCa and long may it continue.
Not sure what you mean by question the G grade. Regardless, all the best to you
I mean G9 is aggressive and therefore more likely to spread to bones or lymph nodes.
A G9 doesnt normally leave you in peace. Therefore have they categorised it right?
It’s MSKCC in NYC. My PSA had risen quickly during the 5 week period from initial diagnosis to first ADT treatment. I had 4 mets and also had one dirty lymph node ( which was removed). I assume they got the Gleason score correct, but I would be quite happy if they ended up being mistaken. How would I know otherwise. Everybody is different and responds to treatment differently. I count myself as being extremely fortunate to have responded as well as I have. And, while it may be unusual, I believe there are others with similar mets, psa and Gleason who have responded for 10, 15 and possibly 20 yrs with it. Perhaps the removal of my prostate and 34 lymph nodes actually helped. I don’t know- I am just happy to still be here.
A new research study was released today about the differences in types of prostate cancer that may explain this. I don’t know how to post the article here but am sure someone else will post it shortly.
Good luck
Hi jfoesq
Congrats and thanks for sharing. Do you also have a specific diet plan/routine and exercise program?
Thanks
My very best to you
Regards
Haniff
Not really. My docs basically said I should eat a heart healthy diet. So- I avoided red meat for several years and increased my intake of fruits, vegetables and nut. I also cut out French fries, potato chips, ice cream and desserts. I am not as strict as I was for the first few yrs , but my diet is better than it was pre- diagnosis. I also have taken Lupron for more than 10 yrs for slightly high cholesterol and I drink 2-3 cups of coffee every morning, both of which MIGHT help in fighting the disease.
Best to you
Lupronfor cholesterol?
Not really, Haniff
I did cut out red meat completely for 2 years, and seriously limited it thereafter. Although, I must admit to indulging in red meat a decent amount the last 2-3 years. I have also increased veggies and fruits and decreased or almost excluded entirely really bad things: such as French fries, potato chips and ice cream, soda, white bread.... I have definitely improved my diet from what it once was, but I don't eat near as well as many others I read about on this site. I was on a pomegranite juice thing at dinner for a while but haven't been for a while. Exercise has been much more limited than I would like. I had a knee replacement 3 yrs ago with follow up surgery in December. I also had back surgery about 18 months ago for a disc that was causing weakness in my "good" leg. My knee is still not great and my other leg is still pretty weak. I also have issues in both shoulders and my other knee (though I am not interested in additional surgeries at this point in time. All of these issues, and shortness of breath (probably partially related to the ADT) basically limit me to walking, easy biking and some golf. My tennis days faded away along with all the other activities I used to enjoy. I did manage to ski this past winter (which I have been doing since age 3), although it was painful and I was short if breath. I need to rehab my legs more to be able to do so again this coming winter. I knwo I could swim (although, that dies bother my shoulders) and bike ride more often, but...…..
Best to you
Great news!
Last scan and labs show Both ADT and Zytiga have failed for me after one year. PSA triples and Mets increasingly and/or growing. My question is… If I am ADT Insensitive is it still necessary for me to keep on it?
Maybe. Cancer is not a homogeneous disease, and you may have a mix of sensitive and insensitive cancer cells. If it's only a few mets that are growing it may be possible to zap them with radiation. I've also heard chemo can also restore hormone sensitivity in about 30% of patients.
Disclaimer: Not speaking from personal experience.
Thank you for your help and wisdom !
Good news, and best wishes. Thanks for sharing.
I’m 35 months into this fight, PSA at <0.05. Getting my 6 moth scans the 1st of July with the readings and shots on the 2 Nd. Anxious for good news 🙏🙏🙏
I will be thinking about you on those days. All the best
I met my RO on Thursday for my 3 month checkup.
Great news and a smile from him !
I am doing very well, indeed ....
My total'T' is on the edge of the normal range (lower but still climbing).
My PSA is 0.03 (slowly climbing) and we expect it to go higher.
The 'target' is to stay below 2, which is expected to be the case.
I'm getting stronger, feeling great and very optimistic.
This is 2 years post-dx !
And I've given up politics for a more stress free survival.
Had to share the great news !
I am so grateful I could just $%&*&%#^&* for joy ....
I am working on my pace. Still, I started running seriously at age 40 and ran 3 5Ks that year, all slower than the one I ran two weeks ago. 
It sounds like you were a runner before being diagnosed, like me. I've been paying special attention to runners, and even though it's a very small sample size so far, they all seem to make it to the 5 year mark with many more years ahead of them.
I’m an avid 69 year old cyclist. About to start ADT. Scared senseless. Ready lots. Am I going to need to buy an eBike now?
I don’t think so. I am now 61 and have been on ADT for 7 years. I still ride my bike. The thing that holds me back from a good hard ride is not the ADT, it’s my bad knees/leg. Had a knee replacement 3 yrs ago and haven’t had a great result. Also, permanently injured a nerve in my back causing weakness in my other leg. You should be able to keep riding.
Wishing you the best
I kind of needed this right now. On Monday, I find out if I’ve made one year of ND PSA (zytiga, prednisone, and lupron) after from dropping from 500 psa to a very low one the previous 1.5 years (other ADT, chemo and radiation). It’s got me a bit more anxious than usual for my now normal bimonthly battery of tests. Posts like yours help reinforce to me that psa going up and down over time (not just down and then ND) is just a normal part of this living experiment also known as our bodies and lives. The point is to live and celebrate what we have. 🙏🏻
Thank You...I hope to follow your footsteps...it has been undetectable for me for 13 mos with just ADT as well. I am always wondering when "The Beast " will awaken...but you give me hope!!!
Great news and good to know!
jfoesq,
Wonderful! I hope I'm an earlier version of you: high risk with several bone and node mets, on lupron continuously since Dx 2 yrs ago, RP in a clinical trial at MDA. PSA undetectable (<0.01) since shortly after the surgery 16 months ago. About 7 months after Dx, one of my MOs told me "If you're still with us in 7 years, we've hit a home run." Well, you've shown that home runs are possible. So let's both go the distance and go past mere home runs and hit for the cycle, along with many more of our brothers. I go for my semiannual scans/blood work in a couple of weeks. Wish me luck!
My good news is to be here 5 years and 8 months after having been in great pain and with a PSA of 5,006 at original diagnosis. If you click my user name, a treatment summary is in my Profile. I am grateful.
Charles
That's awesome, and would be on par with my best half marathon ever.
The good news is that there's no bad news...Congrats.... Who is your MO at MSKcc?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 06/27/2019 6:19 PM DST
Dr. Howard Scher treated me until he stopped seeing patients about 2 yrs ago. Since then, Dr. Dana Rathkoph
Wonderful! So happy for you. Thank you for the good news. If you don't mind me asking, did you change your diet? If so, would you share it? Cheers!
WOW!!! Who are you- Jack Lalane. Man- you are a beast. Really awesome
First Good News in Awhile!
Good news!
OK, a little good news , what is next?
Good news
