PSA 70 & Gleason Score 9: My 70 year... - Advanced Prostate...

Advanced Prostate Cancer

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PSA 70 & Gleason Score 9

Izzygirl1 profile image

My 70 year old husband was diagnosed last month with advanced stage PC that has metastasized to his bones (spine, ribs, pelvis, legs, skull). He has had 2 Firmagon shots last week. He had a normal PSA last year so doctors said his PC is rare and very aggressive. He is being treated at Hartford Healthcare in CT which is associated with Sloan Kettering. I made appointments at Yale Hospital (Smilow) and Sloan in NYC for him also for their opinions. Current oncologist said my husband will start chemo at the end of the month. Promises to get him in remission but not sure for how long.

Anyone else here have advice ?

64 Replies

Ask about triplet therapy:

prostatecancer.news/2021/05...

Did they biopsy any of his metastases?

Izzygirl1 profile image
Izzygirl1 in reply to Tall_Allen

Thank you for your quick reply! ❤️ They did not biopsy his bone Mets. Should they? We have an oncology appointment 7/5.

Tall_Allen profile image
Tall_Allen in reply to Izzygirl1

Yes. They may uncover a reason why it appears to be so aggressive. Most causes have no therapy, but a few do.

dhccpa profile image
dhccpa in reply to Tall_Allen

I get the sense that very few oncologists ever suggest to a patient that a metastasis should be biopsied. Am I incorrect? And is such a procedure covered by Medicare? Thanks

Javelin18 profile image
Javelin18 in reply to dhccpa

My UCLA MO told me it isn't standard practice to biopsy mets. From a knowledge standpoint, it seems a good idea to characterize the form of cancer that isn't responding, but that would have to wait until treatments have had some time to work.

dhccpa profile image
dhccpa in reply to Javelin18

Thanks. I'm still stable on Lupron only after 3.5 years. But after mentioning met biopsy to my MO a few times, I'm not sure he would know how to even go about it (nor would I). So it's in the back of my mind.

Tall_Allen profile image
Tall_Allen in reply to dhccpa

It is done by an "Interventional Radiologist."

dhccpa profile image
dhccpa in reply to Tall_Allen

Thanks! That's helpful.

Tall_Allen profile image
Tall_Allen in reply to dhccpa

In my experience at several top hospitals, it is increasingly common.But probably not in community practice. For histology or IHC, the hospital has to have a well-equipped pathology lab or send it to another one (like the Wang Lab at Duke) that does. Genomic analysis is usually sent out.

I think the oncologist will add Abiraterone to the Firmagon after the Chemo to treat your husband with the triplet therapy.

Izzygirl1 profile image
Izzygirl1 in reply to GP24

Thank you for that info! ❤️

MateoBeach profile image
MateoBeach in reply to Izzygirl1

The AAR (advanced androgen receptor medication, such as the abiraterone +p) should be started at the same time as the chemotherapy, and as promptly as possible upon starting Firmagon (ADT). That is what “Triplet” or triple therapy means, and is best known approach for his de novo metastatic PC. Good luck to you both. We are here for support.

Izzygirl1 profile image
Izzygirl1 in reply to MateoBeach

The doctor told us today he is getting ADT, docetaxel, and darolutamide as his triple therapy. So far he has just had 2 Firmagon shots and the next one on 7/22 along with a hormone pill. Then shortly after that the chemo. Is the darolutamide the chemo?

My husband was in extreme pain before the Firmagon shots on 6/24 and now he is in no pain, so we think it's working to shrink the cancer!!

Today they told us his Gleason score was 4+5=9 if that matters.

Thank you for your help!

MateoBeach profile image
MateoBeach in reply to Izzygirl1

That is a very good plan and I am relieved that he is pain free. The Firmagon shot is the ADT to stop the testes from producing testosterone. That starves and suppresses the cancer cells that depend upon it. The darolutamide ( Nubequa) is an “advanced androgen receptor” targeting drug. It is an excellent one and prevents the cancer from finding workarounds to the ADT. The third component is the chemotherapy, no doubt docetaxel, which is the best first line chemo for PC. Usually given once every 3 weeks for 6 cycles. So it is over 15 weeks after the first. Very doable. There should be no undue delays as this three pronged approach is best given together at the beginning of treatment, and not sequentially. A powerful blitz that fits his clinical situation..with kind regards, Paul

You guys are the toughest men I have ever seen to do all that.

Izzygirl1 profile image
Izzygirl1 in reply to MateoBeach

Thank you Paul. That info really helped me understand things better!

❤️

CAMPSOUPS profile image
CAMPSOUPS in reply to Izzygirl1

MateoBeach brought up something I think is important and can get lost in the discussion. Also maybe it wasn't clear to you in the link Tall Allen provided.Adding the abiraterone at the same time as the chemo is very important to maximize for the best outcome.

To explain it may confuse you so let me just say using both chemo and abiraterone works synergistically:

relating to the interaction or cooperation of two or more organizations, substances, or other agents to produce a combined effect greater than the sum of their separate effects

I was in a similar situation - newly diagnosed PCa, many bone mets cranium to pelvis, PSA 70, Alk Phos about 10x normal, Gleason 4+4. Bone pain in left hip and numbness in my lower lip were the original symptoms. I started on Bicalutamide for a month then went to Firmagon and finally switched that over to Lupron. Based on the PEACE-1 study, we added abiraterone + prednisone and I did 6 cycles of Docetaxel. Bone pain was well managed in the first few weeks of Bicalutamide and hasn't returned. Currently stable (no new bone mets) and feeling pretty good.

You should talk to the oncologist or a urologist about impact on sexual function. Doctors are often embarrassed to discuss this but it's important for you to understand the ramifications upfront so you don't get blindsided.

Izzygirl1 profile image
Izzygirl1 in reply to Djangler

Thank you so much for this info!! ❤️

dhccpa profile image
dhccpa in reply to Djangler

Why did you switch to Lupron? side effects from Firmagon?

And how long since diagnosis?

Djangler profile image
Djangler in reply to dhccpa

Lupron has similar effectiveness and is on 90 day injection cycle while Firmagon is 30 days. Honestly I prefer the Lupron muscular injection in my backside over the Firmagon injection in my belly. I think they started with Firmagon because it has lower joint pain and that was my original symptom.

Diagnosis was July 2021. Gleason 4+4.

dhccpa profile image
dhccpa in reply to Djangler

Thanks. I've heard mixed things about Lupron vs Firmagone, side effects, etc.

Djangler profile image
Djangler in reply to dhccpa

I've had few side effects from either of them aside from expected sexual issues caused by suppressed testosterone. Mild hot flashes and I've had to pay more attention to food intake to keep from gaining weight. The Firmagon left hard lumps in my belly at the injection sites. Not painful, but it took quite a while for them to fade away.

I've seen conflicting studies listing each of them as slightly more effective than the other. Neither is a slam dunk.

Izzygirl1 profile image
Izzygirl1 in reply to Djangler

My husband had that lump in his stomach after the Firmagon shots also! He will like the Lupron muscular shots much better I think and it's only once every 3 months instead of once a month.

Biopsy, direct or liquid for IHC, histological and genetic studies and triple therapy with ADT plus chemo and abiraterone or darolutamide.

Izzygirl1 profile image
Izzygirl1 in reply to tango65

Thank you!! Genetic study set for August! They said they could change treatment plan if they need to after those results come back… I feel like asking them to move up the date!!

tango65 profile image
tango65 in reply to Izzygirl1

You are welcome. Best of luck with the treatment.

KAgolf profile image
KAgolf in reply to Izzygirl1

DO--it is important IMHO to get genetic testing ASAP, so you "might" know quickly if certain treatments will or won't work and what gene mutations are in tumor. Had to keep badgering my hubby's oncologist to get tests done. His results showed that 2 treatments probably would not work for him.

Hubby also a GL 9, grade 5, very aggressive, stage 4; however, they caught it early we believe since his PSA was 5.15 after always being in the 3's; after 3 mo. wait and see, PSA 8.18; 1 mo. later after biopsy and the day he started ADT, PSA 10.43---he did/does not have any mets, but will have another DEXA scan in 2 months; also had 8 weeks of proton therapy and his RO is pleased with what he sees.

has radiation of any type been mentioned? guessing after chemo., but don't know as hubby hasn't had to have chemo ............yet

Hubby is on 3-month Elligard (same as Lupron) after starting ADT with one Firmagon injection to get T down. he is also on Abiraterone + prednisone. Both ADT and Abiraterone can cause bone loss, so get a DEXA scan for base before treatments and perhaps up calcium intake and Boniva (or similar); we had no idea hubby had osteoporosis in 1 hip and osteopenia in other hip--not good when you're taking meds that will decrease bone density.

good you are taking charge with appointments; make list of lots of questions for docs

this is a great forum with many knowledgeable men who willing share info. and are very helpful---I have learned a lot here and been able to generate questions for oncologist from things I read here. Unfortunately for us, oncol. hubby sees is of little help. I wish we were in area where I could find an MO that specializes in prostate cancer.........😔😒

bless you and best of luck to you both---

Izzygirl1 profile image
Izzygirl1 in reply to KAgolf

Thank you so much.... I hope your husband's treatments are working well for him!!

KAgolf profile image
KAgolf in reply to Izzygirl1

yes, so far it seems to be working--PSA <0.01, but T still above 20--no one seems overly concerned about that. Luckily he hasn't had the hot flashes, but is suddenly beginning to show some troubling "forgetfulness"; I suppose it may be worse b/c of age--78 with birthday coming up in August. Don't know if it takes a year for ADT to build up and make things like this worse by compounding the amount of drug in them...did your husband have an Auximen PET (for prostate cancer)? mine was lucky to get one --think his urologist had to be creative with coding..

Izzygirl1 profile image
Izzygirl1 in reply to KAgolf

He did not have a PET yet... just a full body bone scan and they could see where all the cancer had spread on that.

My husband has just mild hot flashes so far but is very emotional.

KAgolf profile image
KAgolf in reply to Izzygirl1

a friend of ours also had issues with being EXTREMELY emotional--would cry for no reason, etc. He found it very embarrassing to be crying like that--all his friends said don't worry about it, we understand, and no one thinks less of you, but didn't really help him.IF a PET is suggested for your husband, the Axumin is just for prostate cancer and there is also a PSMA --I personally don't know much about it or when it would be correct one to have, but there are some posts on here about it.

nueclear.com/psma-pet-scan/

Was there any discussion about radiation or proton therapy after chemo?

it's all very overwhelming right now, isn't it? My head kept spinning trying to figure out what we should do next or go next--finally it all sort of fell into place.

Izzygirl1 profile image
Izzygirl1 in reply to KAgolf

Thanks for the info! No discussion yet about proton therapy after chemo, but I did bring that up! It is all very overwhelming so I'm taking things one day at a time... Monday is our visit at Sloan in NYC. I'll go with a list of questions!

KAgolf profile image
KAgolf in reply to Izzygirl1

good luck, take a deeeeep breath to settle your head so you can listen and write down everything---it you need to, and I did, ask the doc to repeat or you repeat what you think they said. It is really hard to listen and write down answers or info. at one time.

things will probably start to fall into place after this visit

let us know how it goes Monday.

good luck to you both and tell your hubby to give you a BIG hug for me!

At 79, I had a fast-rising PSA of 111 with Gleason 9, but CAT scan showed no mets. I therefore opted for a prostate removal, and the Surgeon waited three months to check my PSA. When it came back at 258, we were both astounded. A PET scan then showed multiple mets, and I was put on Casodex which dropped my PSA to 58 within a month. I then started Lupron injections (3-month) and Apalutamide, which dropped my PSA to undetectable and Testosterone to 3. The Doc said that was a miracle, and it's stayed there for the last nine months. I also started a fish, veggies and fruit diet, a moderate exercise program, and stopped all alcohol and caffeine.

Izzygirl1 profile image
Izzygirl1 in reply to ReeGee

Thank you.... I believe in miracles and so happy you had one! I asked the doctor today if my husband should be on a special diet and was told just to eat healthy. If his appetite is not good then he should be eating whatever he wants. But I'm making sure he is eating much less red meat (if any) and veggies and fruit! I heard tomatoes are very good so we are eating a lot of homemade pasta sauce.

I’m sorry as we all are to hear this news. So much can be done now for prostate cancer. This site has been a godsend for me over the years. People here are kind, and offer genuine advice. I wish you both the best and will keep you in my prayers 🙏🏽

Izzygirl1 profile image
Izzygirl1 in reply to Bebby1

Thank you so much... everyone has been very helpful to me! ❤️

I live in CT and was DX’d at Hartford Healthcare. I chose to be treated at MSK. MSK has a satellite office in West Harrison , NY. A little easier drive right down the Merritt Pkwy. I went to MSK NYC for HDR Brachytherapy. Smilow at Yale is also a national center of excellence so good places for second opinions and Clinical Trials if you want to go that route.

Izzygirl1 profile image
Izzygirl1 in reply to TylexGP

Thank you! We will be going for second opinions to both MSK and Smilow at Yale also! I hope you are doing well.

Slow down and trust your doctor. I had a high Gleason score Mets in my pelvis and i kept reading and thought I was going to die in a matter of months. How stupid of me, I get my Firmagon shot every 28 days and I took two years of Xgeva. All of this started over six years ago and my PSA stays at 1.8 or thereabouts and my tetestrrone stays at about five. I eat, stay active and enjoy life, but the only thing that I have to tolerate it is hot flashes and no sex. I also believe in God and lean on him when I’m not feeling great which is usually the day after my shot of Firmagon. Trust your doctors don’t read too much and try to become a doctor because that takes up too much time that you can be out enjoying yourself and having fun😂🙏🇺🇸🎶🥃🎤🍷🍺⛳️

Izzygirl1 profile image
Izzygirl1 in reply to Dannyboy48

Thank you so much! I'm so happy to hear you are doing so well on Firmagon for so long! That is wonderful news! Thank you for sharing that with me!

Check out the off label use of fenbendazole.

dhccpa profile image
dhccpa in reply to woolspnr51

I've used it since Feb 2020. Stable throughout with low PSA, but not ready to make claims yet.

Have you used it?

Hi Lzzygirl.Just keep you spirts up.

I'm in the same boat.

I already have had 4 chemo treatments.

The future scans will indicate if the chemo is working.

I also have the Hartford health care Team.

They are great!

Good advice comes from the medical care team.

Only opinions can come from other sources.

Izzygirl1 profile image
Izzygirl1 in reply to Alice85

Thank you so much for replying! It's nice to know someone close by who is in the same boat! I really love the person we met with today... she was very informative and answered all our questions for over an hour. We left feeling very positive!! I hope you are feeling well.

I also have an aggressive form of PCa, that had metastasized to my bone by the time I was diagnosed. Being only in the bonus and not organs is a positive sign. Hitting it hard upfront with triplet therapy will hopefully knock it back.

Izzygirl1 profile image
Izzygirl1 in reply to Javelin18

Thank you Javelin! I'm saying a prayer for you right now! We think that triplet therapy is a very good treatment plan from everything we have read and from the doctor's encouragement!

So sorry, I know how scary this is for you both. My husband's PSA was 105, Gleason 8. That was in 2016, he was 69. His treatments (44 radiation and hormone therapy) kept him good for quite a while. In 2019 his PSA stared to increase; more scans confirmed the mets had spread to bones. We weren't surprised but had naturally hoped it would take longer. We knew all treatments are temporary and will need to be changed when cancer adjust to its environment and starts being active again. Your husband had biopsies of his prostate at the start to arrive at his Gleason score, plus several scans also to determine progression, trying to biopsy the bone mets seem unnecessary. My husband wouldn't want to go through such a procedure if it won't help. Doctors already know from the biopsies what type of cancer cells they are. Sadly, it's the normal progression for this grade and stage of prostate cancer. He is still very treatable. It sounds like you are in good hands with your doctors, they have seen thousands of cases yet know cancer is not a one size fits all. Keep that in mind when others give you advice. There are treatments which will help slow things down and keep your husband comfortable. If one doesn't work well, as everyone can respond differently, they will try another. Of course, your input and questions about all treatments should be welcomed and thoroughly explained by his doctors. It certainly pays to be informed. I know all the information and opinions can be overwhelming. You will receive many suggestions here and also great support. Many guys on this site have reported success with treatment for many years so that is always good to see. Don't lose hope as new treatments are being studied and trials offered.

Izzygirl1 profile image
Izzygirl1 in reply to

Thank you so much ChicagoMed for your kind words and encouragement. It's like learning a whole new language and I told my husband today it's like we are in a bad dream and I am ready to wake up now! I literally just retired this past week and wasn't expecting this at all for my husband... but I'm very very hopeful that he will get in remission and stay that way for awhile!! I hope your husband is doing well and continues to find a treatment that helps him!

❤️

in reply to Izzygirl1

It is a punch in the gut for sure! So much to take in at once. Plus as you can see, so many treatment plans. Each treatment is geared toward individual need so that is important to keep in mind when reading about the various ones. It's a similar yet different journey for everyone. All these folks on here understand your worry and confusion with this sudden detour. You and your husband are not alone.

Izzygirl1 profile image
Izzygirl1 in reply to

I'm so grateful for everyone's help!!!

64 years old I had DX May 21 , GL9 extensive bone Mets PSA 930. I could barely walk. Got biopsy at Walter Reed to make sure there wasn’t other cancer involved even though unlikely(there wasn’t other cancer). They also sent in sample to John Hopkins and it turned out original pathology was wrong. After hip RT, Chemo, Xtandi and monthly Firmagon SOC , my PSA is 1 and currently showing no lesions onPET scan. I was in the middle of Chemo when triple therapy study results came out so my MO did not start Xtandi concurrently. Now like others have said Triple therapy is SOC and has best outcomes. Also did genetic testing and discovered CHEK2 mutation which may account for very aggressive nature of my PCa. Next treatment may be PARC inhibitors. I like others were very scared at suddenness and speed of progression but I feel great now . Breath and good luck!👍

Izzygirl1 profile image
Izzygirl1 in reply to Rolphs

Thank you so much for sharing that info with me! Very Helpful !! I'm so happy you are feeling great now!!! Thanks also for the "breath" reminder!!!

in reply to Rolphs

Wow! Very glad you are doing so much better.

My hubby(62) had similar diagnosis June ‘21. His first Eligard quarterly shot was July ‘21 and then added Xtandi the end of Jan ‘22 which stopped working Apr ‘22 so he decided to try the Joe Tippins Fenbendazole protocol plus additional supplements. There are several Facebook groups: non surgical Prostate support, Fenbendazole and mycancerrocks that have testimonials and protocols. Don’t panic and do your research before you decide which plan of treatment.

Izzygirl1 profile image
Izzygirl1 in reply to MamawV

Thank you so much for replying with that info!

Sloan is the best............... Keep posting.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 07/04/2022 7:24 PM DST - God Bless America

Izzygirl1 profile image
Izzygirl1 in reply to j-o-h-n

Thank you John.... luckily Hartford Healthcare is affiliated with Sloan in NYC. My husband would rather stay close to home, to his kids, to our bulldog.... but we are going for a consultation to Sloan in NYC. Hope you are feeling well.

Main building (campus) 68 street and York avenue? or Kimmel Center 68 Street -near First Avenue? Actually cross the street from each other.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/06/2022 1:11 PM DST

Izzygirl1 profile image
Izzygirl1 in reply to j-o-h-n

353 East 68th St Dr. Kampel

That's the Kimmel center. From Goggle:

Dr. Lewis Kampel, MD is a Medical Oncology Specialist in New York, NY and has over 54 years of experience in the medical field. He graduated from Georgetown U, School of Medicine medical school in 1968. He's 79 years old with lots of experience (Sorry but I don't know of him).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 07/06/2022 1:41 PM DST

Hello lzzygirl1, this is a journey for both of you. I’m 61 and just recently diagnosed with advanced PCa with bone involvement. I could not do this without my dear wife of 38 years. We all come from different places and backgrounds but we do have this in common. I can see how this is affecting my wife and I worry about her. I am new to this site but will encourage her to create her own account and reach out for connections to you and other wife’s. Thanks for being involved. This is life changing but it isn’t over. Personally, my wife and I put our faith God.

Thank you! Your wife can reach out to me any time! We are taking things one day at a time and finding joy in something each day!

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