6yrs on ADT (Firmagon )

[Dannyboy48]

I have been on firmagon for the past six years. My PSA stays around 1.1. My testosterone stays at about five. These numbers have been steady for the past six years and I asked my doctor many times if I should take a break. When they found my cancer it was in my pelvis bone with three mets .I also took Xgeva the first two years until I got dead jaw syndrome. After that The dentist fixed it with no problem and no pain. I have not gone back on the Xgeva. The answer to your question is the same question I used to ask my oncologist about taking a vacation, and his answer is always if your treatment is working stay with it never change the horse in the middle of a race.

Yes sometimes it is a bit aggravating I got advanced prostate cancer at 68 years old and I am now 74. The only difference is I used to play golf five days a week now I play three I used to chase my wife around the house and now she doesn’t have to wear sneakers😂 please sit down and enjoy each other’s company and have that second glass of wine or third 👍🙏🇺🇸🍷

[d3is4me]

Thank you for your post makes me feel positive about Firmagon have APC bone mets 6mts on Firmagon Psa 1.1 after 3mts awaiting next test. Love "second or third glass wine"

[Hidden]

Bravissimo Dannyboy48 ……Great attitude! For me it’s been Over 7 yrs since the dx , no metzs outside of the prostate . I had pc tumors blocking urethra and bladder causing k failure foley and tubes from kidneys then internal stents for a total of two yrs of hell . .IDid imrt Lupron 18 months until orch let me drop Lupron . I’m Still on a test adt Tak-700 stopping adrenal T . my Psa<.1 and no signs of pc with 3 T , so hypogonadism . I’m now 61 ! Whoohoo ,and like you my mo says stay the coarse …and my wife hung up her runnng shoes too 😳 How did they fix the jaw problem ? I went into osteopenia and take prolia . I had a crown go bad. We tried a post but my bone collapsed so i have a gap now . 1 st time since a baby! Take care ! Scott

[Dannyboy48 in reply to Hidden]

I really wouldn’t worry about a missing tooth that’s the least of our problems, think of the good side of it one less tooth to brush. The way they fix the dead jaw syndrome was to just leave it alone and the dentist said in time he would pop the dead jaw out like opening a clam. It took about a year and he popped it out ,the gum crew back over the jawbone. No pain and now no problem anymore. I am not going to go back on the Xgeva until they find new bone Mets . I am now having some urinary retention problems, have not decided yet what course I am going to take. Right now I have doubled up on the Flomax and they take one Cialis every day. Seems to be working pretty good right now. I pee like a racehorse if I have a few rum and cokes in my yeti, the more ice the more I pee . Not sure if it’s the ice or the rum😂🥃, I am not a beer lover but I’m sure that would work also drink one Pee 2

Have a great day keep smiling and enjoy every day🙏🇺🇸

[Hidden in reply to Dannyboy48]

Wow? Good jaw fixing the jaw! Dam ! Was not that painful? I think dammed if we do dammed and dammed if we Don’t with most treatments but the bone meds in particular.. uti can bring a guy done . Had them constantly for 18 months s with the tubes . Those strong antibiotics wreak havoc on my joints . Now djd is my main issue . “Yeti, “ very funny! I liked the beer in Germany! I like a fine whiskey . I drink seldom . I’m the king of running to pee day and night . But for the two years that I did not pee my only prayers as to pee again without great pain . Whoo hoo , made it ! Thank God! To pee or not to pee . Simple choice . He’s tmi for you . Chopped the boys 2017 once the foley was out . I’ve got nightwood all night every night w/ no balls . Wife lost any attraction to me . I pee through out the night . Damed night Ranger ! You can not have urine retention . I did 50 gram vitamin c ivs and bi-weekly for 18 months that im convinced helped me to run out the pc tumors …. I Hope that you can soon fix that retention . Good luck Sir!

[Dannyboy48 in reply to Hidden]

jaw went back to normal after dentist popped out dead part then gum grew over exposed jaw bone Al good and no pain 👌👍🇺🇸

[Hidden in reply to Dannyboy48]

wow! Amazingly good outcome I guess! 🎯

[Seasid]

Did you have only Xgeva and Firmagon as your only treatments? Did you have radiation or surgery? Did you have a biopsy? What was your Gleason score? Can you please fill out your profile so we can better understand your situation?

[Dannyboy48 in reply to Seasid]

Good afternoon, yes my only treatments were extra for for two years and I am continuing now six years on Firmagon my Gleason score was nine when diagnosed and my PSA was about nine. All good now staying the course with just the Firmagon every 28 days and complete blood work up every month. I get a pet scan every six months. So far so good just don’t have the energy I used to have but I am 74 years old so I guess I can’t complain🙏👍🇺🇸🍷

[Seasid in reply to Dannyboy48]

Which PET scans are you getting? Are you getting also a CT scan in combination with the PET scans like PET/CT every time or are you getting only a PET scan only every 6 months? I had 4 PSMA PET scans and only the last one was a PSMA PET/CT scan. With a full body CT scan in combination with a PET scan you could get more radiation every time.

[Dannyboy48 in reply to Seasid]

OK my friend, I’m just looking at my Chart and now I will list what scans I have had. MRI of the spine MRI of the abdomen both with contrast MRI of the pelvis with contrast, PET scan CT from skull to mid thigh CT of the abdomen and pelvis CTA pet CT axiom. Bone scans. I’ve had many more scans over the past six years because of complaining of discomfort in the lower abdomen which wound up being a hernia and lower back pain due to inactivity. The main thing I have learned is to enjoy today, keep moving today, keep laughing today and always start your day off with a prayer and end your day with the prayer 🙏

And most of all be comfortable with yourself sing a song get out and do some thing, laugh have a drink or two and don’t read too much and keep on smiling😂😂🙏🙏🥃🇺🇸😍🎤🎼⛳️🎶🤔😃

[Seasid in reply to Dannyboy48]

For not enough energy could you do weight lifting? I did deadlifting today, one set, 16 repetition with 50kg. I will wait until I fully recover from the exercise before doing it again. It could take more than a week. I only started very recently with weightlifting. I don't want to overdo it. My goal is a long term improvement in my bone density.

[Dannyboy48 in reply to Seasid]

I visit a physical therapist twice weekly and do exercises at home also that also seems to work for me and giving me more energy. I guess anything that keeps you moving is a good thing⛳️🏋🏼‍♂️🤸🏿🚲🎣🍷🍷

[PommyB in reply to Seasid]

Good luck with filling out the report form, it requires precision over accuracy and what it allows you to put in gives a false incomplete history.

[Dannyboy48 in reply to Seasid]

Gleason score 9 after biopsy Xgeva and Firmagon were my only treatments

[Magnus1964]

Six years, that great. You're doing great.

[leo2634]

I've been on Zytiga,Eligard,Prendisone for five years now no vacation. I've also had Provenge infusions two years ago. I was diagnosed late 2017 and have extensive Bone Mets , Gleason 8 + 9 across the board. PSA 0.1 since first starting ADT treatments. I don't chase my wife around either but we still enjoy wine and being together. I don't think that will ever change. Never give up Never surrender. Leo

[Boywonder56]

Eh mate me onc says same so i quit askin........they want me on xgeva...but dentist said no.....slaentje'☘️

[Dannyboy48 in reply to Boywonder56]

I was an exgiva for two years and it erased my three bone mets in my pelvis. I had a lot of shortness of breath with the Xgeva also. If I didn’t get the dead jaw syndrome who knows how long I’ve been on it . I was at the dentist a month ago and he said I could go back on it but I’m choosing not to at this time. I get bloodwork every 28 days and Firmagon every 28 days. Everything is stable for the past six years so I’m not changing anything. My PSA started at 9.6 and my Gleason score was 96 years ago. My PSA for the past six years has stayed between one and 1.9. So far so good good luck to you my friend

[Seasid in reply to Dannyboy48]

They want me also on denosumab but I said no like you to them.

[Seasid in reply to Seasid]

You only need bone medication before you end up having Xofigo, as alfa radiation with Xofigo could rip appart your bones as it finds its way everywhere not just where your cancer is. Xofigo is not ligand related so goes also there where your have bone damage from sources not related to the cancer. You will only need Xofigo if you develop bone pain. Xofigo is not a system therapy and should be given less priority than to other systemic treatments. I am not a doctor but it is my personal interpretation. You may need denosumab if you are diagnosed with osteoporosis as a result of long standing ADT and not enough weight bearing exercise on your yearly bone density scans. So try to walk a lot.

[Seasid in reply to Dannyboy48]

Did you do the bone density scan?

[Dannyboy48 in reply to Seasid]

yes Every year I get a bone scan

[Seasid in reply to Dannyboy48]

Bone Densitometry? Or the nuclear medicine bone scan?

[Dannyboy48]

I’m sorry maybe I did not make myself clear, I am on Firmagon still for six years plus. I was only on Xgeva for two years when I had the bone Mets . The bone Mets disappeared while on Xgeva and I quit Xgeva when I had the jaw problem. No more Mets and no more bone medication as of now

[Seasid in reply to Dannyboy48]

Thanks, everything about bone medication was very clear for me. I may start one day but not now.

[Dannyboy48 in reply to Seasid]

Good for you ,keep on plugging 👍🙏🇺🇸

[Seasid in reply to Dannyboy48]

In a STAMPEDE clinical trial they didn't find a survivor benefit in a zoledronic acid bone medication. I know that a clinical trial with Xofigo plus bone medication had less cracked bones than a group with Xofigo alone. My Oncologist also said that Xofigo can result in brocken bones because of the radiation energy breaks the bone. Therefore you need a bone medication if you end up needing Xofigo. Xofigo could be needed if you have a bone pain. I am aware of that. But now I still don't have bone pain. Do you have bone pain now?

[Seasid]

When was your last PSMA PET scan? Where are you having them? I didn't have a PSMA PET scan for a very long time as my PSA was until recently only up to 0.2 but started to go up after I received my COVID 19 Pfizer mRNA vaccine. I am not saying that they are in any connection. Just very recently my PSA is above 0.5. so I have to make a decision to have one PSMA PET scan again after 4 years of not having one.

[Seasid in reply to Seasid]

I han the PSMA PET scan and i still don't have any visible bone mets.

My bone density is dropping therefore I am going to the endocrinologist.

I may end up on Prolia (denosumab 60mg injections) every six months. I have to go to the dentist first.

I just started SBRT of my prostate 38 Gy will be delivered every second or third day in 5 sessions.

I am also on Firmagon only after more than 4 years.

My last PSA was 1.4 before my first MRI Linac SBRT yesterday.

The SBRT was recommended in order to avoid spread outside of the prostate.

I hope to stay on Firmagon only. We will see.