I’m an active 45 year old Australian, dad of 10 and 12 year old, living in Vermont USA, and I just recently got diagnosed with stage 4 prostate cancer.
Mets to lymph nodes, several vertebrea, hip, rib etc. Gleason 9 and a relatively low PSA at 6.7 which is unusual. Apparently the sign of an aggressive cancer. Great. So not great news all around and the docs here in VT at UVM have seen very few cases like this in someone my age. I guess I’m special?
Had my first Degarelix ADT injection one month ago. MSK doc recommends Transitioning to the pill form Relugolix next week along with starting darolutamide. PSA last week is already down to 0.7.
Was Weighing up options to go ahead with standard of care- ADT and chemo OR do one of the Pluvicto (lutecium Lu 177) clinical trials at MSK in NYC. The trial is seeing if Lu 177 BEFORE chemo is effective. The travel to NYC from VT would be a challenge but do able- almost almost once a week for 7 months minimum. That’s if I get in the arm that received the Lu 177 straight off. If not, they just monitor you on the ADT and the switch you over to the Lu 177 arm if you regress. Seems counter intuitive to me to just wait and see untill you get worse?? Before giving a cool drug??
Anyway… I did just discover recently that Lu 177/ Pluvicto is available in Germany. I’m seriously considering that and need to make a Decision this week or next. Cost is out of pocket but not out of reach. May require up to 3 trips. It sounds better to mw, than doing chemo straight up.
Curious if anyone had thoughts or experience with this?
Also, its been really helpful to hear stories of younger cases like me, going into long remission or holding it at bay for a long long time. Hoping my age is going to help this situation, not hinder it.
Nice to have found this group recently.
Thanks all!
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dochelem
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Sorry you have had to join our group! I'm getting Pluvicto in Everett, WA (near home), had 2 of 6 so far with very minimal side effects. The clinical trial would be good, as the amount of 'regression' under the trial would not put you at risk, and then you'd get the Pluvicto anyway! I'd lean toward the clinical trial, as the expenses for you would be way less - almost enough to charter a limo for the NY trip ;). With the Germany alternative, there is the travel and lodging costs on top of the therapy. If you still want to travel. Mexico City's main hospital (MedicaSur) is also doing Pluvicto at a reasonable (!) cost - I investigated prior to insurance authorization at local hospital.
Hi. Sorry that you find yourself here. I was 53 at diagnosis, now 56, almost 3 years in, high starting PSA of 1,311. I'm on Enzalutamide and ADT.
To be fair your Medical Oncologist is going in hard and Standard Of Care has changed in the past 3 years to be ADT, Darolutamide and chemotherapy. My understanding is that Darolutamide is now arguably the best of the 4 options of Abiraterone (Zytiga), Apalutamide and Enzalutamide (Xtandi). So your making a good start and can take a few weeks to decide.
So the big question is, to do a randomised clinical trial of Pluvicto in the US, travel for definite Pluvicto or do chemotherapy. Triplet therapy of ADT, Darolutamide and chemotherapy has shown thru clinical trials to offer the best overall survival but these newer treatments offer massive potential.
Only you can ultimately decide but Pluvicto is also available in Australia, India, Azerbaijan and Turkey at rates cheaper than Germany. Some people have added AC225 to the Pluvicto to really go after the micromets, although this can cause some salivary gland issues. A distinguished poster on here, Paul (Mateo Beach) went to Australia for J591. If you search on here you can find various stories, contact information etc. Germany and Australia appear at the forefront for treatments.
Just some thoughts. Also, if possible ask for your biopsy to be analysed for certain DNA strands like BRCA 2, MsHi etc. Good luck my friend.
Hey man, sorry about your luck. You have a story. So do I. Me: 42 at stage 4 DX. It is a long story but the ending is all you should be concerned about. I am 59. There is hope.
It is hard to explain. From the beginning I focused on staying positive. I held on to every victory. I believed I was going to beat this disease or at the very least go all 15 rounds. I mostly attribute my journey to remaining hopeful and having faith. I decided I wanted to live and I would not let cancer take center stage. I made it a poo t to live every day and control what I had control over. I became a better friend, husband, and father. I lived every day like it might be my last. I resolved that it was possible that prostate cancer would end my life but I would not let it have control over how I lived. Maybe I had so much fun living that I forgot to die. Todd
P.S. sorry for the late reply. It has been a very busy few weeks.
This is so inspirational and beautiful I needed to screen shot. I highly suggest you put it as a post labeled inspiration or dint give up so those who didn't get to read it might draw some strength . Ty ty ty . Proud to meet you xo
Sorry to hear as your so young. Did they send your biopsy for gene testing? I would think that is important. I suspect triplet therapy is SOC but if you can get whatever you want your lucky. I couldn't even get Darolutamide approved on recurrence so am on Xtandi. Is the trial they may get you into PSMaddition? There's not many for Pluvicto for hormone sensitive disease so curious if there's others as I did not qualify for that one.Best of luck to you and welcome to the forum.
That sucks! It sounds like you are pursuing the best options: triplet therapy (ADT+darolutamide+docetaxel) and Pluvicto.
For the PSMAddition trial, there is a 45 day limit for previous ADT, so you don't have much time to make up your mind. If you're randomized to SOC, the crossover occurs as soon as there is radiographic evidence of progression. The SOC has changed since the trial began because it now includes triplet therapy, but I don't think they've revised the trial to reflect that. I would be indifferent if the SOC included triplet therapy.
I'm glad you will be making the decision to go to Germany (or India or Australia ) quickly. At first, ADT increases PSMA expression, but after a while, it decreases PSMA expression. One month is fine, but I don't know if 3 months is. If you are still an Aussie citizen, you can get free treatment at Peter Mac in Melbourne, which is second to none.
What does it mean for PSMA expression is someone is on ADT for prolonged time than? My dad is on various forms of ADT for years (last one being Xtandi since July 2022).
Dad’s PSA is now 20 (increasing 1 to 2 points per month) with many mets to lymph nodes. We are to have bone scan this month. We can not get PSMA PET CT in our country, so I thought to just take him to Austria for PET CT (both PSMA and FDG). And after getting results, I could take him to Germany or Austria for treatment. Does it sounds like a good plan?
Because his oncologist says it is stil doing some job 🙄. We have appointment with her in one month, when we should also get results of genetic test. As I understood her last time, all she now has to offer is chemo (Docetaxel). I would prefer to try with LU-177, if scans would justify it. What would you do, if you were in our position?
In that case, I take back what I said about PSMA expression with Xtandi - when the cancer is resistant I know of no reason why PSMA expression should be low.
I don't know if docetaxel or Pluvicto is better as a next therapy.
Dochelem Sorry you had to join this club. There is a new PSMA PET/LU treatment centre opened in Melbourne that would be worth researching Melbourne Thernostic Innovation Centre
thanks for this info! I took the advised had a zoom call with Professor Hicks last week. Very informative. He was the doc who suggested chemo before adt as I explained in my post
Dochelem Thanks for your reply I was told the same when DX as I tried For LU177 Told by the nuclear medicine physician "need something with a more proven track record and substantive than LU177"I have chosen not to do chemo only Degarelix + Abiraterone
thanks… yes my oncologist hinted at that option. If the Degeralix and (subsequently went on Aberatirone and Prednidone) is working… maybe wait and see on chemo… still thinking about this approach. Keep the chemo up the sleeve for later? Or hit it hard now while it’s “sleeping” ???
sorry you are in the rubbish world of stage 4 . I was diagnosed at 49 T4N1M1A, based in the UK . Had docetaxl then radiotherapy now zytega . Still here 8.5 years on , ran a 4:28 marathon last week , have run ultra marathons all over the world and totalled over 15,000 miles running since I was diagnosed . Don’t give up . I wrote a book Dead Man Running , it’s on Amazon telling my story , not everyone is as lucky as I have been but everyone can make the most of every day no matter what .
wow at 45 😭. So very young. No experience with the 177, have been watching it for quit a while. Stage 4 here in 2016 at 66 years old. Doctor went with a different direction at that time. 6 rounds of Taxotere chemo, then Adt every 28 days with Xtandi Dailey since chemo was over. It has worked for me so far. 6 years and 4 months. I’ve been on the Xtandi now longer than any of his patients so I’m happy. Good luck warrior 🙏
Welcome to the club that no one wants or should have to join. As others have said, 45 is so young to be Dx at stage 4. I was 65 when Dx last year and missed the chance to get on the ADDITION trial. I would go for that if I were you, but everyone has their own choice to make. Whatever you do choose, I wish you the best with fighting the beast.
I was diagnosed at 53 years of age, now 68. I completed a Trial Study at Dana Farber, Dr. Beltran, with LuPSMA177 just last year. And I was Chemo naive. Have since moved onto BAT, responding well. Love to talk with you.
Welcome to the club nobody wants to belong to. I live on the other side of the state in the NEK. I'm stage 4 been at this for 6 years. Have you inquired for treatment at Dartmouth?
This SUX... And I am the first to know as I was also 45 at diagnosis.. I agree with Tall_Allen's input. What I am thinking - kinda in line with that - is that Pluvicto might not be as affective with that low PSA which might correlate to low PSMA expression (from the mets). But yes - try it out, but soon ! (Note, it is 1/3 the price in India compared to EU).
In your case I would also consider looking at the PEACE-study. ADT+Docetaxel (chemo) + Abiraterone (Zytiga 1000 + 5mg pred.) and in addition radiation to prostate. Furthermore, even though there is not (sufficient) evidence , I would go for stereotactic radiation to mets (at least the biggest one and radiation of the pelvic bed (lymph nodes). The last part could be wack-a-mole (since you would need systemic treatment), but who doesn't play, doesn't win.
If you are tested positive for BRCA-mutations, then consider also treatment with a parp-inhibitor...
Pheeew man, this is tough... I can recommend you to watch the small movie made by the danish facebook group "The Young Prostata Guys". Search for "danish patient" on chose the post I made recently: "Sad update: Danish-patient passed away one month ago"..
I was in my early 50’s when dx over 9 years ago. You can read my profile to see what treatments etc. I’ve undergone. My advice - get with a top notch oncologist who specializes in prostate cancer even if that means some travel is involved. And go at it aggressively early on, that’s what helped me, that and my faith in Gods healing hands.
dang! Sorry for the news and as you can see there are many in the same situation with many treatments available which is a conundrum. Which one one do we choose? I am being treated at msk and if you need any help there, please let me know. Stay strong, you can do this!
My husband also had low PSA on diagnosis Jan 2021. Initially he had ADT and chemo. In retrospect I think we should have opted for LU177 straight away but as you know when you are first diagnosed it as all very confusing. At the end of 6 chemo sessions he transferred to a clinic in Finland where he received Lu177, AC225 and Xofigo in addition to Xtandi and ADT. He took Xtandi plus ADT for 1 year and was then given a three month break and then back onto ADT only (no Xtandi). He also had SBRT to the mets and radiotherapy to the prostate. We have no way of knowing whether this aggressive approach has been any more beneficial than anything else but so far so good. As TA mentions, I would be looking at some of the trials at Peter Mac. The one that stands out to me is the trial that combines LU177 plus two immunotherapy drugs. It is worth asking your oncologist whether this is appropriate to your condition. There was a gentleman who posted here recently who had not had any success with LU but when Dr Sartor added Olaparib his ADT was reduced. Very best of luck to you with your decision.
I’m right there with you brother. I’m 45 in Alaska and was diagnosed with stage 4 in January. I have mets in the nodes and 6 in the bone. My kids are also school age. The diagnosis came as a shock because I’m very active and completely healthy besides the cancer.
I’m currently being treated at MD Anderson in Houston. My oncologist is doing triplet therapy with radiation starting in the few months to get to remission. He wants to hold chemo for a later later to preserve my QOL.
We’re in the fight to prolong our lives, and raise our kids into adulthood. Regardless of what treatment you decide I would eat a healthy diet, lift weights and go for hikes even when you don’t feel it (that’s the ADT talking).
Seeing my dad's decline ,the people saying exercise is important pleas please listen to them bc I know my dad would still be wanting to fight ,even the endorphins you will need. Explore the least likely to cause other cancers . My dad went in very aggressive and did get leukemia stage 0 last year but he did not work out or move in any way that was helpful. He was a a workaholic. Choose your gate as much as you plan . Write out the activities in detail youlmbe doing ten years from now and tell the universe or whatever higher power you believe in that you are grateful as if it already happened. Shit ,I have not been following my own advice so now it's time . Ty for reminding me to fight as well.
I had UTI type symptoms, burning when urinating, bacteria in urine, blood upon the initial stream, and constricted flow. All these symptoms caused me to be misdiagnosed as having prostatatitis and BPH for 7 months. It was a skilled urologist that finally ordered a biopsy after an index exam and found the cancer.
---Thanks. Really enlightening. And it sounds familiar. When you say "bacteria in urine," do you mean obvious dark specks or sediment in the urine? That is my current experience.
No specks. The bacteria was detected by a lab. The blood was of various shades of red. The worse was deep red. It was always during the initial stream and then lighted up.
Once I went on ADT these symptoms all cleared up, and my prostate returned to its normal size.
Initially it was Firmagon because it doesn’t cause the testosterone flair. I tried the Zytiga and progesterone for 3 weeks, but my liver enzymes got out of wack. I’m now on Lupron and I’m about to start Xtandi.
My PSA dropped on the ADT from 79 in late January to 0.7 a couple of weeks ago. It’s probably even lower now, but my next blood work is scheduled for mid-June.
I also went vegan when I was diagnosed with metastatic disease on the advice of my urologist. This diet with increased gym time has lowered my cholesterol and has keep me from gaining weight (I actually lost 10 pounds) while on ADT. The diet and exercise might not reduce the cancer, but it does mitigate some of the side effects (heart attacks, stroke, and diabetes) that ADT can increase the likelihood of.
Hello, I too was a bit on the young side when I was diagnosed. Age 53. I was diagnosed with a high Gleason score which they labeled aggressive. I have undergone many of the testing and treatments that you mentioned in your story. Please take a look at my story and hopefully you can find some information that may assist you as I have documented my history pretty well. Best wishes to you.
Just be realistic; it has nothing to do with age. 45 or 85, you have metastatic cancer and you have to take the best course of treatment. I didn't read your entire message but people here can advise you.
Pick a good doctor, one who listens to you, and don't be shy about changing if you're not satisfied. Best of luck.
That’s a tough call, dochelem. You should get a PSMA PET scan to see how that correlates with other scans. Must be concordant to suggest Lu-PSMA treatment of likely benefit. It would be very good to receive it early on if yours is PSMA avid. Treatment is also available in Australia at GenesisCare in Sydney and in Perth. That’s where I went for treatments and was very pleased with Dr. Nat Lenzo. Also available in Dehli and elsewhere. I too would be skeptical of the possible randomization to ADT only.
Current best known SOC for De-novo metastatic PCa is Triplet therapy using an advanced AR drug (darolutamide or abiraterone +p) with ADT and docetaxel chemo. So discuss with your best docs. Perhaps virtual consult with GenesisCare (Theranostics AU) or PeterMac, also very active in radioligand research and treatment about whether to get early Lu177 (+- Ac225) before Triplet or not? Only takes 4 months to complete the six cycles of Docetaxel.
Good luck sorting it all out. Stay steady, it’s a long fight. So keep your family informed and close. Paul
for whatever this may be worth - your body and your life will change. However, I have learned that when things stop changing - you are no longer alive. I think you have the BEST therapy you could have - a supportive family. Welcome to a journey you did not ask for but there are many on here who will hold your hand along the way. Oh yeah, they will tell you to exercise - do it. I am not an exercise person and it took me a long time to get started - but that was my choice. Wish I had listened earlier but
I was diagnosed at 45 years old as well with metastatic disease to the lymph nodes.
Gleason 8- after trying to keep pc at bay for several years with bicaludamide and pencil proton beam therapy, I opted to pay for LU-177 in India 🇮🇳 and completed my third infusion in October 2022. I started Relugolix ADT 10 days prior to receiving the third infusion to boost the treatment response.
I’ve continued Relugolix and it’s been 6 months on it so far. My last PSA was .03 and I’m staying on Relugolix for at least another 6 months prior to taking a break and seeing what PC is active via a PSMA pet scan.
If you have any questions about Lu-177 in India feel free to private message me anytime. Overall a very good experience and definitely a reduced fee over Germany and Vienna which I also considered.
Lu177 is available in NJ though there may be a wait bc my dad is in findl stage and his was pushed back two onths but NJ Hackensack. I'm 47 and on here bc of my dad. He has loved 7 years and now decline after a stage one trial so know that the pipeline for pca is strong and I don't see the harm in using /u 177 / pluvicto early on. My dad went in aggressive with chemo. By now I'm hoping you are on lupron or similar. Few mistakes my dad made that I'd like to support you and your family . My dad still worked s stressful job but he did not exercise or follow any diet ,he did not take any supplements or parasite meds or anything out of the realm of conventional med that can prolong your life, new treatments are undetest for those that have a tumor sequenced ,and do gene testing early on as well. He did none of this it's been I think 7 years since truly dx but he actually knew the year prior but would t get a biopsy . This group has been invaluable to me . I watch those who have taken life by the reigns . Though I don't think I ha e cancer I do have autoimmune issues so I can commiserate on so many levels ,but from what I seen many have a better quality of life than I have even during treatment . Seek out those people and know and believe the pca pipeline is strong and fortunately for the men we love ,the cancer given the most attention is this one bc it only affects men . I was on lupron at 20 and yes it sucks at first and you may cry at commercials . Lol get a case worker and utilize that case worker which my dad did not . Get second opinions . Do not own your disease..not my cancer just cancer your body is killing off as we speak . Everyday you are healing from cancer . I learned attitude is everything so no matter what it takes find the support bcy dad fell quite honestly to severe depression bc of his wife and that's when the cancer that had not changed in over six years started taking my daddy. He is still with us. Get pt . It will help you get stronger throughout. Keep weight on bc you'll need a bit to get through some treatments . Laugh travel live and personally reach out to me and others and I plan to devote my life to standing beside those affected and their loved ones . It's a fallacy that men do not get pca young and I continue to beg for men to get psa checked starting at 40 . We are here. We are now . We can fight this . The journey has changed ,but the love of your children and the joys of life have not . Pca science and oncology research is advancing . I hope something can be learned of my dad's mistakes esp that id depressed seek help bc your mind is your greatest asset I learned in watching him thrive and now the decline bc one person did not love him and he hid his pain and cancer knows when the mind makes the body weak . You have the advantage of age and fitness. Use it as you are more likely to die with not of pca . I wish my dad did more than just follow protocols and I'm glad that when I petrified hid from covid he traveled and lived .
This broke my heart when I first read it until I thought wait there's so much life ahead my friend . Don't ever stop believing. ..
I'm really sorry that you are here so young.. all cancer is unfair - but hitting a young father with it is just beastly.
I'll just comment - a friend - who was in his 70's when his cancer was diagnosed - refused to do any form of ADT or chemo. He was a composer and was afraid the treatments would change his ability to compose music. That doesn't mean he avoided any treatments - he just tried to avoid ones he felt would dull his creativity.
He did do Lu 177 - and had to do it out of the US since it could only be done in the US if you'd done ADT and become castrate resistant (at the time.) He had 2 treatments done in Germany.. then Covid hit and Germany shut the door on any additional treatments. He had another treatment done in Australia (which he claimed was an equal trip since he lived in LA), then they shut the door.
Unfortunately his disease was too far advanced, and Covid shut many treatment paths and he passed away some time later from the PCA.
If I was in your situation (and I'm not - so take that info account) - I'd be seeking the best systemic treatment I could find since you're already metastatic. Your medical oncologist would be the person I'd rely on for advice on this. In your situation, I would tend to have a strong feeling that Lu 177 is the path to follow, ASAP. The Sloan-Kettering trial would be attractive IF you could be guaranteed you'd be in the Lu 177 arm of the study. If they weren't able to promise that - then I would strongly consider alternator sources of treatment.
That's just me, and I'm certainly not an MD. Good luck with whatever treatment you decide on.
45 is very young to have advanced prostate cancer. However, you have greater resilience for stronger treatments. As scary as it is to have such a diagnosis, there are many treatments available. I recommend having your spouse or someone close to you attend all your appointments to be your health advocate. Between your heightened anxiety and need to listen, having an advocate to remind you of questions and concerns, as well as take notes is vital. Keep a spiral bound notebook for appointments and treatments.
Also, always consider getting a second opinion. It is done all the time and it either confirms the treatment plan or may open up other possible treatment options. Learn as much as you can through reputable websites, such as MSK, Mayo, Johns Hopkins, MD Anderson, NIH published studies and this forum.
You are definitely not alone! We will offer whatever support and information we can. The key is to get beyond fear and focus on treatment outcomes. Don't forget that quality of life is important and the trade offs between the types of treatment and the side effects.
Greetings. 45 years old.... hmmm I'm close to double your age (86). Pca like all cancers are slowly losing the battle to takeover our bodies. You will see both of your children finish college, getting married and having their children. So start saving enough for all the gifts you're going to have to buy them.
As far as you going to MSK in NYC for Pca treatments is very wise and will be fruitful. I know it's a long trip from there in Vermont to NYC (approximately 6 to 7 hours). Take a train round trip and sleep all the way. I am a patient of MSK and live in NYC (I'm lucky). Keeping posting here for tons of information. Give your kids a smack from me and fight those tiny bastard cells.
j-o-h-n <===<<< Senior management is about to spike my spikes....
This is your brother from India, beating you at your age game with heavy Mets at age 41, now at 43, seems like doing ok SO FAR, I am a stern believer of triplet therapy and mind body game, meditation plus weight training both are no longer options for us, they are mandatory. Peace and stress free lifestyle are must too. At this very turbulent phase peace and stress freedom might sound joke but believe me with medication, meditation and weight training you will reach there.
Oh, I turned to complete veg and fruit and nut and seeds, it helps my digestive system a lot, with cancer in your body you want to keep as many systems healthy as possible.
Finally like you, I hope John's word turns out to ve true.
For lu 177 your peter mac is the best, ishita b sen at delhi is the next best. Any help for india, do message me.
You need to talk to experts. Dana-Farber Boston is a top-notch prostate cancer center. Please consider going there. It is much closer and is definitely not inferior to anyplace in the world. I am a patient there and swear by it. "Trust them with my life"
Hey bro, I was 46 Gleason 9 mets to spine, ribs, lots of Lymphs. I am 57 now. Don't despair, its not the death sentence it was years ago. Not saying its an easy road but better than the alternative. Prayers out to you. Feel free to message me and ask for my number if you need to talk. Peace, J
I had early chemotherapy five years ago 45 days after starting Degarelix injections. I recently radiated my prostate and my PSA is 0.37 now.
Could you consider triple therapy? ADT, darolutamide plus early chemotherapy? I personally would do that. The results are very good and known. 63% of people on that treatment survived 4 years. I would not experiment with lutetium. You are too young for that. 8 years after that radiation you could have side effects.
Greetings from Sydney. If you retained your Private Health Insurance and or have a Medicare card , Prof Andrew Kneebone at Royal North Shore Hospital and his team have helped my buddy live a good 5 years longer than what he was looking at prior. Sending big hugs and huge wishes for great outcomes to you and your loved ones.👍🏻
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