Calling all Gleason 9 warriors ….. - Advanced Prostate...

Advanced Prostate Cancer

15,801 members19,194 posts

Calling all Gleason 9 warriors …..

Simonapo profile image

Hi everyone, I am not posting often but I am reading all the posts on HU and became a daily routine like reading the Bible. Lately there were quite a few tributes to some special brothers that we’ve lost and hearing these sad news triggered anxiety. I am very worried about my Dad and I am calling all Gleason 9 warriors that are out there …please say few words about how are you doing and give hope to some of us that are at the beginning of this bumpy road. Thank you so much and God Bless all of you ❤️

114 Replies

Welcome to the group. Lots of good information and support. I was Gleason 9 when diagnosed last January. If he is castration sensitive, the cancer can be knocked back with Androgen Deprivation Therapy ( ADT) which can keep it at bay for years. Since he is oligometastatic, he can have the primary tumor irradiated. Still lots of treatment options.

City of Hope is a great place for treatment. I’m being treated at UCLA, but consulted with Dr Dorff at City of Hope. She participated in the VISION trial and has a couple of trials for CAR-T and BITE, two promising new immune system treatments.

Simonapo profile image
Simonapo in reply to Javelin18

Thank you so much, I always enjoy your posts, thank you.

Javelin18 profile image
Javelin18 in reply to Simonapo

Thanks for that reply. The support of this group is a great blessing to me.

Simonapo profile image
Simonapo in reply to Javelin18

I feel the same.

5 1/2 years here. Still fighting the fight

Simonapo profile image
Simonapo in reply to mrscruffy

Thank you so much for your reply, sending much health your way.

I was diagnosed with a Gleason 9 prostate cancer in July 2012. I was 62 then, 72 now. It had regionally metastasized to my pelvic lymph nodes and bladder. I had three doctors who seemed to be chanting in unison "advanced, aggressive and incurable". I started ADT (lupron and Casodex) and in November/December 2012 had external beam radiation. I also had kidney stents inserted for over 8 months to deal with a urinary obstruction caused by the tumor in the bladder. I tolerated both the radiation therapy and the ADT well; lots of side effects but mostly minor ones.

Within a month of completing the radiation therapy my PSA dropped to undetectable. In November 2014, after 17 months where my PSA stayed undetectable, I stopped the ADT meds (on the recommendation of my medical oncologist). I have remained off all cancer meds/treatments ever since. My PSA has stayed low (never higher than 0.2).

I certainly have done far better than my doctors expected. The treatments worked well. I also adopted a vegan diet after diagnosis, with lots of cancer fighting foods. I also have always exercised heavily which I think helps. (In 2020 I rode my bicycle 3300 miles. However I stopped biking last June after a bicycle fall where I fractured my pelvis and had to spend 2 months using a walker. This may have been an indirect result of the cancer treatments which led to loss of bone density, especially in the pelvis.)

Always keep in mind that the stats are just averages - there are always outliers. Best of luck to you.

Simonapo profile image
Simonapo in reply to smroush

That’s amazing, so happy for you, I am so glad everything worked out so well, thank you for all the hope you gave me, much health to you.

Kevinski65 profile image
Kevinski65 in reply to smroush

I've gone 10 years. Diagnosed in 2012. Lupron and Xtandi trial was what I was in at NIH. They're closing the trial soon. I was Stage 4, PSA 31, doubling 5 months, 3 bone Mets, glass opacity in right lung. I've been in Lupron and Xtandi. I've had Zometa every 3 months. Bone mets kinda dried up , lung cleared. The original doctor said I had 6 months. I was a supplement junkie for awhile. I also took a lot of aspirin which I don't recommend. I now take Celebrex and Zyflamend whole body. That's about it. Don't know what I'm gonna do to get Xtandi after trial. It's expensive. Might have to go on abaraterone.

Simonapo profile image
Simonapo in reply to Kevinski65

Wow 10 years, so happy to hear you’re doing so well with Xtandi and Lupron, hope you find a way to keep getting Xtandi even after trial ends, since it worked so well for you. Best wishes and much health 😊

I had a Gleason 9 score at Advanced Prostate Cancer diagnosis last January, Simonapo.

ADT has already failed and I have many bone metastases; so, according to my MO, Xofigo (Radium 223) is the next step.

Simonapo profile image
Simonapo in reply to diamondrn

I am sorry to hear that, I heard good things about Xofigo working really well for bone Mets, best of luck and much health to you.

Don't let Gleason 9 scare you. I have a Gleason 9 score. Diagnosed over 29 years ago.

Simonapo profile image
Simonapo in reply to Magnus1964

I know, you are my number 1 warrior, I am following you closely, so happy for you, best wishes to you, thank you so much for you encouragement.

JoeBo profile image
JoeBo in reply to Magnus1964

Magnus, you are an inspiration to us all! Thank you!😊

I was diagnosed with Gleason 9 with pelvic bone mets in November 2017. I’ve been on ADT twice and had RT almost 2 years ago. I responded well to treatment. I’m currently on my second ADT vacation. My last PSA level was 0.1. The most annoying thing has been the side effects of ADT, not the cancer itself. Aside from that I’ve felt fine the entire time.

Glad to hear you’re doing so well, thank you so much for your reply.

I’m not worthy! I was a mere 8.. 😎✌️

Simonapo profile image
Simonapo in reply to Lulu700

Of course you are Scott, you are amazing 😊

Lulu700 profile image
Lulu700 in reply to Simonapo

I’m just kidding . Many are 10 .. Take care ! 😂

SeosamhM profile image
SeosamhM in reply to Lulu700

Yah, but what an 8! Your story is indeed amazing...

Lulu700 profile image
Lulu700 in reply to SeosamhM

How about a Crazy 8! Like Minnie Pearl used to say. “ I’m just happy to be here”! Hang tuff dude! 💪😎

Hi there! my dad diagnosed Gleason 9 in 2020 mets to several parts of his bones , despite having sometimes pain here and there, but most of the time he doing very well! i do get anxiety easily, but thanks to this forum helped me alot.

Simonapo profile image
Simonapo in reply to worrywaffle

So happy that your Dad is doing well, I totally understand how you feel, thanks God for this forum.

I was diagnosed as Gleason 9 in May 2016 with Mets in both hips, T11 spine & 6th rib. I have been on 6 monthly Eligard since and had 25 radiation sessions and 6 doses of Chemotherapy each 3 weeks, ending in February 2017. Scans showed that Mets basically disappeared after a few months. My psa became neglible soon after and remained that way until it slowly rose at the end of 2020. Scans showed a new tumour on T11 spine. After 3 sessions of SBRT, my psa has reduced to neglible again and scans show the tumour has remained stable and reducing. So there certainly is a lot of hope and successes with treatment. At 73 years old, I am feeling quite well overall with a few aches and pains here and there. The peripheral neuropathy in my legs can be a nuisance. But I have just spent 2 wonderful weeks away at the beach with my wife , son, his wife and two grandchildren. We caught enough fish off the rocks and jetties here in South Australia ( summer here) to enjoy fresh fish and calamari for most evening meals. Exercise is the secret to feeling better I believe. But everyone is different. Best wishes for the future and a happier 2022.

Simonapo profile image
Simonapo in reply to Brightman

Thank you so much for the nice reply, so happy for your great results with your treatment. Glad to hear that you are taking time to enjoy with your family, sounds amazing. Wishing you a happy and healthy 2022!

Lulu700 profile image
Lulu700 in reply to Brightman

Boy that fresh fish and calamari sounds great! That is worth living for. You’ve already suffered a boat load . I Started this in 2015 and think Its a miracle that I’m still kicking . Has your fire threat lessons at all this year? I pray so . Cheers Brightman ! 😎🏜

8 and 1/2 years in so far. Got 5 years out of Lupron before moving on to Provenge and then Xtandi. Now on Lynparza after genetic testing showed it could work on mutations. Feeling better than a year ago and enjoying life. New treatments are being developed all the time. Keep the faith! Exercise is key!

Simonapo profile image
Simonapo in reply to Yank66

So glad you are doing so well, that’s true, new treatments, better treatments are becoming available all the time which gives us lots of Hope. Take care and best wishes😊

Hi , I was diagnosed at 49, PSA 342, T4N1M1a chemo and radiotherapy over the next 6 months , bashes the cancer good but it started growing again a few months later . Started on Zytega Jan 2016 , still here still on Zytega (they have made a lot of money out of me !) and PSA 0.11 and has been for years .In those 7 years I ran 2 marathons on chemo , have raced over 20 x 150 mile races across the Sahara , Cambodia , Albania , Spain, Jordan , the Canadian Arctic plus loads more where I live in the United Kingdom. I have run I guess around 15,000 miles since diagnosis .

I have slowed a bit but hey I am 56 now , the drugs have made my bones weaker but no breaks to date . I have written a book “Dead Man Running “ and believe that every day is a gift no matter what . You will never have today again so don’t waste it being sad .

I have raised over $1m US for Prostate Cancer UK and will keep going until I am in a box . I have not finished every race I have started , some are just too tough for me but life is about (metaphorically) putting your foot on a start line and doing your best . It’s the journey not just the destination (although it’s nice to finish some !) .

Hope that helps you believe that for some life can go on and on and on. Exercise , diet , no stress , purpose and sense of worth got me 7 years . Take care

Darryl profile image
DarrylPartner in reply to Irun

Your fundraising of over 1 million dollars for Prostate Cancer UK is impressive. I'm sure I'm not alone in hoping that you will fundraise for our Malecare community (the one that supports you here for last three years, at least as well as pcuk). malecare.org/donate

Oct18 profile image
Oct18 in reply to Irun

Very inspirational! What does your diet mostly consist of?

Irun profile image
Irun in reply to Oct18

I try to have more fruit and veg , avoid processed foods . I rarely have eggs or dairy .There may be no precise science behind what I do but my head says I don’t want to be giving semi dormant cancer cells animal growth hormone !

I still drink beer but only a couple of times a week .

I think forgetting cancer if you asked the average person :—

More veg or more meat they would say veg

More exercise or less - more

More beer or less - less

Smoking or not - not

Fresh or processed - fresh

So if that’s an ordinary person someone with any health issue should be even more filling et shouldn’t they ?

Hope that helps , life is also for living , hence the beer !

Oct18 profile image
Oct18 in reply to Irun

Thanks and yes I agree! The reason I was asking is because, like so many others, I was looking for the "magic lifestyle" that would help me either beat this, or at least live with it a long time. I chose to go to a plant based diet over 3 years ago and things went really well for about 18 months, then one new spot showed up last year that was treated with radiation. Last month my PSMA PET scan showed 6 new spots, a rising PSA and I started to question if it was worth depriving myself of some things. After some more radiation on my C1 and hip, for the first time I have felt nauseous and my plant based diet is about the last thing I desire to eat. It literally happened overnight. So for the last few weeks I have eaten mostly healthy plant based foods with some occasional exceptions just to get some food in me. Still very little meat and no dairy. Do you eat any meat?

Irun profile image
Irun in reply to Oct18

Sorry things are moving inside again . Yes I eat some meat . Out of 21 meals a week , 12 are vegan , 3 are vegetarian , 2 have fish and 4 have meat but meat I like , bacon and roast beef . I don’t waste my meat ration on things I don’t like !

We all don’t know why the end will come but I bet 4 portions of meat, 2 fish and a few beers won’t make any difference! Life is for living and enjoying .

Oct18 profile image
Oct18 in reply to Irun

Good advice and I agree! I just watched your YouTube video and was again inspired. Thank you for posting!

j-o-h-n profile image
j-o-h-n in reply to Irun

Life is for living and enjoying.......... you took those words right out of my mind......Thanks and keep running..... and enjoying.....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/19/2022 9:38 PM EST

Simonapo profile image
Simonapo in reply to Irun

I am so impressed by your accomplishments while fighting this disease, this is unbelievable, so happy that Zytiga works so well for you, thank you for your amazing story. 😊

Hi there - I was diagnosed with Gleason 9 in jan 2020. (Mets in lymph, pelvis spine and rib). Went immediately on to ADT with 6 sessions of chemo to start. PSA went from 1000 down to 1.5 in April 2021. Then it went up to 4.7 indicating castrate resistance - after which I went onto Xtandi. PSA down to 0.61 in december. Like many others I have no symptoms from the cancer - just side effects from the treatment. I live each day to the full - I am building a house which keeps me active.

Simonapo profile image
Simonapo in reply to Stoneartist

That’s amazing that you have the energy to build a house, it’s very good that you stay active, hoping Xtandi will work well for you for many, many years😊

Diagnosed GL 9, 7/2019, RP 8/2019 T2N1M0 and went to undetectable PSA, ADT 10/2020 after PSA rose to .16, Radiation 2-4/2021, I have had undetectable PSA since starting ADT (Antagonist) 15 months ago.

All the best.

Simonapo profile image
Simonapo in reply to JRPnSD

Great results, thank you so much for sharing, best wishes and much health😊

Gleason 9 here, diagnosed as G6 in 2012 and G9 in 2017. Last PSA 0.09. Wish your dad the best of luck.

Simonapo profile image
Simonapo in reply to akaipop3ps

Thank you so much, same to you. Great PSA reading, wishing will stay there forever 😊

Started in spring of 2017, diagnosed in spring of 2018, Gleason 9 and 10, PSA of 156 and immediately started lupron, chemo, Casodex that failed after 3 months and now on arbitrone with xgeva every 3 months, PSA last November was 1, still working 20 to 25 hours a week, feel good for 70, 5 years this March. Have to stay positive, research every treatment, keep on this site and eat healthy, I cut beef to once a week and cut back on sugar and baked goods. Exercise is important as is lots of veggies and fruit. Good luck and God bless.

Simonapo profile image
Simonapo in reply to Muffin2019

Thank you so much for your reply, you are doing amazing, Gleason 9 and 10 sounds frightening, so glad Abiraterone works so well for you, you’re doing a great job, best wishes and much health. God Bless.

Hello Simonapo. You have lots of support on this forum, which will provide you with encouragement. I am often reminded that a positive mindset is key to living with this.

I was diagnosed Dec 2014 age 67 with locally advanced T3b M0 N0 Gleason 9 (4+5). PSA=8.9. Did not have obvious symptoms, but family history. Began Casodex immediately (150g). Radiotherapy (37x) June 2015. Casodex holiday from Feb 2017 to Sep 2018 when PSA began a sustained increase. CT scan showed single pelvic tumour. Treated via targeted radiotherapy (5 sessions). Continued Casodex.

Aug 2021 - PET CT scan showed mets in ribs (2) and pelvis (3). Began 3 monthly ZOLADEX injections. Dec 2021 stopped Casodex. Jan 2022 began Zytiga.

So 7 years of this and still counting. It just becomes a way of life, including side effects. Golf is my exercise, plus the grandchildren. There are always new treatments coming along which gives you hope. Good luck !

Simonapo profile image
Simonapo in reply to Ian99

Thank you so much for your reply, I am so overwhelmed by the honesty, willingness to help others and support that I have found on this forum. Wishing you best of luck with Zytiga, I heard good things about it and actually my Dad is on it as well. Take care😊

9 is my lucky number 😎 DD

Simonapo profile image
Simonapo in reply to Doseydoe

Thank you so much for your reply, I can’t believe how many men have Gleason 9, so happy to hear from all of you😊

My husband was diagnosed at 49 in Aug 2017 with Gleason 9, PSA over 677 (was probably higher but urologist gave him bicalutamide 150mg for weeks before PSA ever done. We stopped seeing him asap after learning some of his mistakes), mets to hip, spine, pelvic bone and local lymph. He started ADT immediately after saw oncologist as well as 6 rounds taxotere. PSA got down to 25 after chemo. Has been on Zytiga + prednisone ever since and PSA got to 2.71 at lowest. Scans Dec 2019 and 2020 showed no active cancer. Slight tick up past 6 months (to 3.2) and scans Dec 2021 showed T4 spine bright so just had SBRT this past Friday (RO hoping one and done) PSA will be done in couple weeks and bew scans in March. Throughout it all he has felt good. Added xgeva in 2021 for bones. He still works and is active. Works out because we read to do that heavy if you can to try to fight ADT side effects. He does get more fatigued and a little more irritable but I don't blame him. He's still loving and a wonderful spouse and father. It definitely changes your outlook on life- we try to live each day with no regrets. Our three kids were 18, 16, and 14 at his diagnosis and all three are in therapy. Truly helps them talking to someone outside the family for support.

Simonapo profile image
Simonapo in reply to pakb

So hard to imagine to get this diagnosis at 49 years old, so painful and hard on everyone, brought tears to my eyes to hear about how affected your children were as I am here for my Dad and I share same pain. It looks like you have a good follow up plan and you are staying on top of things. Thank you so much for your reply and much health to your husband 😊

I was diagnosed early 2018, gleason 9, stage 4. I have had no treatment other than eligard and abiraterone. Psa is finally undetectable. My oncologist put my latest scan side by side with 2018 scan and said you have to see this because it will make you happy. I can't read scans but even i could see significant decrease in the spine and pelvis.

Simonapo profile image
Simonapo in reply to michael00

That’s amazing, so happy for your results, thank you so much for your reply😊

DD50 profile image
DD50 in reply to michael00

That's great news michael00 that you've managed well with "just" eligard and abiraterone. I'm curious, if you don't mind my asking: why ADT only and no chemo or radiation?

michael00 profile image
michael00 in reply to DD50

My first oncologist was useless.At our first meeting i was told i had 2 options. Chemo or take a pill at home. No explanations and no details of what to expect. At the time i was scared to death of chemo having seen others go through it in the past. So as scared and lacking knowledge as i was i said i would take the pill at home. I've been concerned chemo may have done me some good but the uninformed choice i made got me this far.

Gl 9, 70 PSA stage IV with pelvic bone and 2 lymph nodes affected DX'd 3 years this month. Lupron, Xytiga, Xgeva 39 sessions EBR. PSA quickly went undetectable and remains there so far. Some side effects from the ADT but life is good. Very active 79 y.o., heavy exercise. Exercise has been immensely helpful physically and mentally.

Simonapo profile image
Simonapo in reply to ck42

Great results, thank you so much for sharing, much health and best wishes 😊

I am almost 6 years in after radical prostectomy with Gleason 5+4. PSA went down originally but then started doubling every 30 days within a few months. Scan showed metastasis to T-11 spine and was staged at 4. Bummer for me and my loved ones!!

But almost 6 years later with nearly constant ADT of one form or the other. 1 Cyber Knife treatment to the T-11, Plant based whole foods lifestyle change and Immunotherapy treatments I am living on and living well. I am not an expert on these things like many of my brothers on this site are, but I can tell by the post that we all react differently to the treatments and to the cancer. I do believe that a proactive mind set is a valuable asset against this disease. I wish you and yours the best in your treatment decisions. May you go with guidance from above.

Simonapo profile image
Simonapo in reply to Quick2019

Thank you so much for all the advice, so happy that you are doing well, I am sure is hard with constant ADT but the positive mind set helps for sure and the results are amazing, best wishes 😊

I’m coming up on 8 years since dx you can read my profile to see what I’ve done for treatments etc.

Ed

Simonapo profile image
Simonapo in reply to EdBar

Thank you so much Ed, wow 8 years, that gives us so much hope, best wishes and health to you 😊

EdBar profile image
EdBar in reply to Simonapo

I can’t stress enough the importance of seeking out and being a patient of a medical oncologist who specializes in prostate cancer. Even if it requires travel. I travel to see a specialist who I see every 6 months who coordinates with my local general medical oncologist. A general oncologist won’t likely give you the same care or have the same knowledge of prostate cancer as an oncologist who specializes in prostate cancer. And even less likely a urologist would, they are primarily surgeons.

And don’t ever underestimate the power of prayer.

Ed

Simonapo profile image
Simonapo in reply to EdBar

I agree Ed with everything, it is so important to have the right doctor, prayers are important too🙏

In 2016 at 61, I was diagnosed with Gleason 9, and PSA 5.2, prostate removed Da Vinci procedure 11/2016, plus 40 lymph nodes removed 10% detectable (metastatic). PSA non detectable <0.05 until summer of 2017. Lupron & Radiation knocked PSA non-detectable until summer 2017. Every 60 day blood analysis PSA has slowly moved up from 0.06 in 2017 to 0.36 Dec. 2021. MD Anderson & Memorial Sloan Kettering both agree no scans until my PSA hits 0.5 so I wait for that number. 2 years ago November started whole food plant based diet and daily walking regime. Average 5.3 miles/day everyday for 2021 (over 1900+ miles 2021) and beating that average so far in 2022. Both myself and wife (walking partner) down to college days weight and loving it. Still enjoy chasing my thin and beautiful wife of 42 years and trying to keep up with the 3 grand boys. Eat right, question your doctors and EXERCISE DAILY. LaTex

Simonapo profile image
Simonapo in reply to LaTexan

Wow amazing job on walking, so glad your wife is right there next to you helping you get the exercise and care you need. Best of luck with the scans, hopefully you will never need them. Thank you for your reply 😊

Take heart. There are many long term G-9 survivors. In May, 2017 I was diagnosed with PC. Had a PET scan and MRI and fortunately, no metastasis was seen. In August, 2017 I had a RP and the pathology came back G-9, encapsulated and it made it into the margins. Six months later I had 42 radiation treatments to the prostate bed. My PSA has been undetectable since the surgery. You will encounter guys on this site who have lived with G-9 for a very long time. Prayer helps. Best wishes!

Simonapo profile image
Simonapo in reply to Miket218

Thank you so much for the encouraging reply, so happy for your amazing results, best wishes and much health 😊Prayers for sure help!

Hi there I've been on Zytiga and Prendisone,Eligard for four years now . It is definitely a life changing experience for me but the key word there is "Life" PSA has been 0.1 since very first month of treatment Never give up Never surrender. Leo

Simonapo profile image
Simonapo in reply to leo2634

So happy for your amazing results with Zytiga, Prednisone and Eligard. Love the words” Never give up, Never surrender”. Thank you Leo and best wishes and much health 😊

Gleason 9 here. Had RP in 2018, follow up PSA was 2.0. went on Eligard then had radiation to pelvic region. PSA dropped to undetectable. Took Eligard vacation after around 6 months and stayed undetectable until 2020. PSA went to 2.0, then back on Eligard. PSA dropped to undetectable again. Last Eligard shot in April 2021, on vacation since. BRCA2. I feel that every Gleason 9 needs genomic testing. Have PSA done every month. We will see how this goes.

Simonapo profile image
Simonapo in reply to Balsam01

Thank you so much for your reply, praying that the ADT vacation goes well and for very very long time. Best wishes 😊

Gleason 9 - ADT with Zytiga failed after 4 years. Now on Jevtana plus Carbotaxel. PSMA scan next week after 2 cycles to see if it’s working (apparently works for ⅔ of people.

Simonapo profile image
Simonapo in reply to andrew61

Thank you so much for your reply, praying for amazing results on your next PSMA scan next week. Much health your way! 😊

Gleason 9, 3b. Life for me is GREAT! Walk closer with God. Feel his love. Do something truly meaningful. A 12 year old boy is coming to my house for 2 hours once a week and I am teaching him basic electrical, how to weld, braze drill, tap etc. Basic shop practices, something he would not get from home or school. Passing your talents at the next generation is truly wonderful. Do something big.

Simonapo profile image
Simonapo in reply to ck722

Wow, such an inspiring story, God Bless you for all you do. Thank you so much for your reply and best wishes and good health to you😊

Hi Simonapo. Coming up on 12 yrs since dx Gl 9. RP, SR, and ADT for the past 6 yrs. QOL is excellent. Tell him ‘To Live!!’ Have to cut this short. Off to play hockey now.

Simonapo profile image
Simonapo in reply to Willydad

Wow 12 years, that’s so encouraging, it sounds like you are doing amazing, keep playing hockey and enjoy life, best wishes and good health to you😊

Excuse me, PSA became detectable again in 2019.

Hi, Simonapo! This can be a wild ride down the river of life - lots of rapids, but definitely some calm spots that allow for reflection and thankfulness. Here's my story of hope.

I was diagnosed Stage IV Gleason 9 in August 2016 for my 49th birthday. The PCa was encapsulated and had not spread to soft tissue (2 lymph nodes were identified) but, there were so many bone mets (I remember watching the monitor on my initial scan and realizing my skeleton was starting to glow almost everywhere...).

However, I soon realized that some mets weren't even worth worrying about in the grand scheme of PCa standard-of-care (SOC). I think I have been very fortunate to have aggressive MOs and ROs, and I was immediately on ADT, taxotere, and focused radiation for the 2 of the 3 most severe bone mets. 9 months later I got the Provenge procedure.

I became castrate resistant after 2 years ADT alone (2018), so I was started on Zytiga (abiraterone) and prednisone. 2 years after that, Zytiga failure was indicated (2020), but through the grace of this forum (!) I was put on to a European study that indicated a simple steroid switch to from prednisone to dexamethasone may increase the time on Zytiga. Again, I was lucky in that I responded, and have so far gotten an additional 18 months on abiraterone.

I am now past the arbitrary "5-year survival" and working on my 6th year post diagnosis - lucky again. I have certainly lost peers and friends here on HU...Henukit, Joekaty, Cleodman, TominMA come to my mind almost daily...and no one can say what path your Dad's journey will take. But know that faith and friends will never fail even in the face of uncertainty. Good luck, strong faith... - Joe M.

Simonapo profile image
Simonapo in reply to SeosamhM

Wow amazing story Joe, so unfair to get this harsh diagnosis on your 49th birthday, but so proud of your results, working on your 6th year post diagnosis, amazing, thank you so much for your reply and best wishes and much health to you😊

Diagnosed with Gleason 9/aggressive in November 2015. Lupron 24 months, IGRT 25 sessions, Bracy boost 2 sessions, off Lupron 18 months then psa doubled twice in 4 months. Back on ADT until it failed in May 2021. No mets and genetic testing not possible because after 2 attempts found insufficient samples to test. Started Nubeqa in May 2021 and psa undetectable monthly since then. Only side effects - low energy, infrequent hot flush, and libedo. Soon to be 74 and doing all I can to stay active.

Great results, hoping Numbers will work for you for very very long time, best wishes and much health 😊

Thanks!

2007, Gleason 9/9 (57 y.o.). Surgery, radiation, Provenge, Lupron, Zytiga. Now I plan starting chemo.

Simonapo profile image
Simonapo in reply to Catfish21

Thank you so much for your reply, praying for best results with chemo, best wishes and good health to you😊

Gl9 with mets ductal hystoligy....dx 2016.....lupron erleada since dx....titan trial....side effects suck....but psa still<.1

Simonapo profile image
Simonapo in reply to Boywonder56

Amazing results with PSA<1, best wishes and much health going forward 😊Thank you so much for your reply.

Coming up on my 3 year anniversary of my surgery. Gl 9, 2 lymph nodes, pretty bad pathology. 2 years of Lupron and Zytiga plus Salvage Radiation making me undetectable for 2.5 years. Been off the drugs now for about 7 months. T slowly coming back. I pretty much eat anything I want although my wife keeps it pretty healthy. Lots of exercise, feel great! Good luck to your Dad!

Simonapo profile image
Simonapo in reply to keepinon

Thank you so much. Wow amazing results with Zytiga, praying for a very very long ADT vacation and much health to you😊

I had RRP in 2011, Gleason 9. Cancer fully contained within the prostate but I did have perineurial invasion which, ultimately, was the escape route for a few cancer cells. PSA undetectable at first but two years later had salvage radiation when PSA hit 0.28. Didn't work but PSA slowly, slowly rose to 1.60 over four years. Had Axumin scan then, nothing found. Incredibly, PSA went undetectable for 1 1/2 years after the Axumin scan and then started to rise and stabilize at around 0.30 for two years. Those free-floating cancer cells finally found a place to establish themselves in a single lymph node as found in another Axumin scan. PSA had rapid rise from 0.39 to 3.90 over 12 months. Started Orgovyx end of March 2021 and will go on ADT vacation end of March this year.

After all the fearful things I've read about ADT over the years, I count it as strange that I've made it ten years as a Gleason 9 and only now having to do ADT. Orgovyx side effects minimal and lymph node has returned to normal. My urologic oncologist subscribes to intermittent ADT therapy so that is what I'll do unless things take a turn for the worse.

Simonapo profile image
Simonapo in reply to Explorer08

Wow that’s so encouraging 10 years on Gleason 9 and you are doing so well, praying that once you start your vacation from Orgovyx on March you will stay ADT free for very very long time. Thank you so much and best of luck and much health to you😊

Gleason 9 diagnosed 2008. Spread to retroperitoneal lymph nodes but now still in remission and feeling well on Lupron and DaralutamideHugh

Simonapo profile image
Simonapo in reply to Blueslover

Amazing 2008 diagnosed and in remission that’s very encouraging, great results with Daralutamide, best wishes and much health to you😊thank you so much for your reply.

My Dx was in May of 2016 - G9, NODE positive (N1) with a PSA in the 3 digits (XXX.xx).

Today, I'm doing well after primary treatments - undetectable PSA - on a monotherapy (doesn't work for all - but in MY case, it has) with lots of road ahead of me.

My doctors are elated and I'm told I should expect to be around for 'quite' a long(er) time.

Don't assume the worst and NO two CASES are identical. Be your BEST own advocate - do some research and ask the right questions and seek a GREAT medical team to take care of the treatment(s) that will follow.

Wishing you the best on your journey .....

Simonapo profile image
Simonapo in reply to RonnyBaby

Wow amazing results, thank you so much for sharing, that’s very encouraging, best wishes and much health to you😊

I was diagnosed with a serious Gleason 9 case, with primary Type 5 cells (G9 = 5+4), locally advanced by MRI, 40% chance of lymph node involvement though not yet visible. Worrisome to say the least.

Treated by IGRT radiation to pelvis and prostate, and hormone therapy for 3 years. No treatment for about 3 year, while the PSA slowly rose. Went back on hormone therapy permanently about 3 years ago, and my PSA went down to undetectable and has remained there.

So 9 years from diagnosis, I am doing extremely well, and have a great life. Don't lose hope, there are good treatments and likely a good long life ahead!

Simonapo profile image
Simonapo in reply to VHRguy

Wow that’s so encouraging 9 years on Gleason 9 and you are doing so well, praying for much health for you for very very long time. Thank you so much for sharing your story and best of luck to you😊

And, on top of all that, he is cordially invited to join, follow and perhaps post to n this forum. It is an education in living well and overcoming obstacles with advanced PC. Paul

Simonapo profile image
Simonapo in reply to MateoBeach

Thank you so much Paul, best wishes to you😊

I was diagnosed in Oct 2017. My PSA was 172. My oncologist put me on Firmagon and bicalutamide. I’ve had RP (radical prostatectomy) in May 2018. The did 34 radiation treatments in Spring 2019. Then six treatments of chemotherapy using docetaxel (sp?) ending in December 2019. My PSA has been undetectable since June 2019. I stopped Firmsgon and bicalutamide since April 2021. Throughout I’ve worked 8 hour days, officiated high school football, softball, basketball and volleyball. I’ve done five local theater productions and one TV commercial. The only side effect of any consequence was nerve damage and weakening of legs. My left foot now droops. But I’m still doing everything I want to. It hasn’t slowed me down.

Simonapo profile image
Simonapo in reply to OldChappy

Amazing, such an inspiration, you have accomplished so much and are doing so well, praying for a very very long ADT vacation, best wishes and much health, thank you so much for your post😊

My husband was diagnosed G9 PSA 40, metastasized to retroperitoneal lymph nodes in 2009. Urologist is old school, afraid to dig out or order radiation on the nodes. We had to fight for more advanced treatments. We went thru the standard treatments without ever reaching an undetectable PSA. What works for one doesn't work for all. A clinical trial turned out to be worse than chemo, and the two years of chemo nearly killed him 2.5 yrs ago. Genomic testing never showed an actionable mutation. Why is he still alive? Because a young "gun" MO moved in from Texas to replace the retired MO, and he badgered and plead with the makers of Keytruda to give him a slot in a trial. We finally got lucky. PSA has been undetectable for two years now. This rollercoaster ride has taken a toll as we all know. He has out lived two of his primary care doctors and got to ring the bell last year standing on his own. He has published 16 novels since diagnosis.

Simonapo profile image
Simonapo in reply to GAdrummer

Oh my god! I got chills reading your story, thanks God for the young doctor that got him into the trial, praying for an undetectable PSA for very very long time, and many accomplishments, best wishes and health to your husband, thank you so much for sharing his story😊

How about my IQ of 9..... does that include me as a warrior?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 01/19/2022 9:41 PM EST

Simonapo profile image
Simonapo in reply to j-o-h-n

Lol, love your posts John, you always put a smile on my face no matter how my day is going, thank you so much for your reply and for every smile you bring to us😊

j-o-h-n profile image
j-o-h-n in reply to Simonapo

You're too too kind..................................... but don't stop.........

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 01/20/2022 7:56 PM EST

RP in October of 2019. Gleason score of 10. Cancer invaded bladder and two lymph nodes while waiting to heal. Chemo (Docetaxel) did not work but on it for three months. Switched over to immunotherapy (Opdivo, then Keytruda for insurance purposes). Genetic testing showed I was a good candidate for immunotherapy. PSA went from 21 to 0.11 after one round of treatment. Then undetectable for last 18 months. In parallel, I have been on Lupron for almost two years and ready for a vacation from that. Keytruda will continue until at least April of 2022. I am about 90% whole food, plant based and exercise almost every day. I feel blessed to to have a "nearly normal" last year and a half.

Simonapo profile image
Simonapo in reply to tennis8285

Thank you so much for sharing your story, so happy that Keytruda worked for you and you achieved such a great PSA number after only one round. Best luck and wishes of great health and enjoy a well deserved ADT vacation after April 2022 for a very very long time 😊

I noticed how smooth your skin looks in your photo. My photo doesn’t show as nice skin, but you can see my hair has grown back in after chemotherapy.

Javelin18 profile image
Javelin18 in reply to Javelin18

Looks like nobody got my joke. My humor is a bit obscure

SuppWife profile image
SuppWife in reply to Javelin18

😁👍

Castrate Resistant and Gleason 10 revealed after TURP and TURBT in August '21 and slow to notify result. Told result in December and booked for Chemo but cancelled owing to left Kidney not performing (as recognised at the time of TURP) Advised would be booked for a nephrostomy but yet to get any confirmation of this. Don't know the convalesence period after antegrade stenting before can have the Chemo.?

Various size disparities with lymph nodes but no bone disease. PSA now 47. Only on Zoladex implant which after 7 years may not be doing its job. Need to chase up. Daresay Covid backlog is reason for delay. Fear I'm in the last chance Saloon if nothing done soon.

Close to 3 years since Dx and still going strong! Staying positive and bugging our married children for Grandbabies!!!

You may also like...