Good morning to all my Brothers in Arms. February marks three years in this battle with the Beast. My journey so far has been interesting to say the least. Diagnosed with stage 4,multiple bone mets, Gleason 8 and 9 across the board. I was put on Zytiga, Eligard, Xgeva from the very start and PSA has been 0.1 ever since. I've also had Provenge treatments last June.
While my fight continues the treatments have put a burden on my body and mind. The medicine has taken its toll on me. Im no longer the man I once was but I'm still alive and thank God everyday for the blessings of another day. Im very grateful for my fantastic medical team for being there for me and keeping me alive , and for my family always in the fight with me.
My last scans showed no progression or invasion of any vital organs, bone scan were the same also. So my Brothers keep fighting the Beast and Never give up Never surrender. Leo
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leo2634
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Hi Leo, Glad you are doing fine. From reading your profile, it seems that ADT has been your lone type of treatment (no radiation, surgery or chemo). Does this mean you'll be on ADT for life?
Was that preferable to radiation followed by 18months to two years of ADT or something that isn't a lifelong treatment?
I too initially considered doing ADT only when I was first diagnosed but after having tried it I found myself not wanting to go forever without testosterone so I am now considering radiation even though the thought of secondary cancers or radiation burns scare the crap out of me.
Did you have a choice or was that the only treatment for you?
Its what my Doctor recommended for my particular Cancer after biopsies and multiple tests. He told me at the onset this was the course of action he felt was best for me and I literally trust him with my life . I told him all I wanted to do is watch my Grandkids grow up and so far so good 👍 I have an amazing medical team and they give me total support.
Glad you have a good team. I had missed the part about Provenge which I believe is immunotherapy. Is that supposed to be curative and if so, did it not work, hence why you are still on ADT?
Since leo2634 had metastatic cancer with multiple bone mets, radiation would not have been an option for him. It wouldn't have done much, if any, good. Radiation is most useful when all the cancer is in spots (like the prostate itself) that can be reached by radiation, not when it's all around the body.
Special congratulations on the successes you have earned. I can most certainly agree with the beginning of your 2nd paragraph. However I’m struggling with your optimism in the remainder of the paragraph.
Great, keep up the fight, I am also on the journey for three years, on, lupron or eligard due to shortage of lupron and just started xgeva and arbitrone last December of 2020, still work part time and feel good, one slight uptake in a lesion but no others. We have to keep fighting the battle, God speed .
Way to go brother, February will mark 55 months since my battle began🙏 The feeling we get every time we go in for a checkup is so weird, hope and fear and joy afterwards. Keep up the battle as I will as well 🙏🙏🙏
Right on man. I'm 4 months away from 4 years and I've had some good luck. I feel completely normal. I'm taking Lupron in the ass and Xtandi. I have another Lupron shot coming up on Thursday. My first one I got some flu-like symptoms for 24 hours but after that, I was good.
If this is how I'm going to feel for the next 40 years taking meds, I'm good.
wish you the best of success Leo. I am now in my 7th year with the same diagnosis as you. Just a word about Xgeva. It was given to help to strengthen the bone , but it has a side effect of weakening your teeth. after 3 years or so my teeth started falling out. My oncologisttook me of the drug and advised that I could keep my bones strong with calcium and vit D3.
Check with your Doc. It might only be me. Other than that, and all the other small side effects from the various drugs its been good to be alive. Stay strong and positive
I know I've already had two bouts of oral surgery for the removal of dead bone upper and lower jaw. I've already talked with my Doctor about it and he has increased my Calcium and cut way back on my Xgeva injection. I used to get one once a month now like every 90 days or so eventually will move on to something else. Leo
Thank you for this post Leo. I was diagnosed 6 months ago with stage 4, bone marrow mets and have struggled with the diagnosis. I am doing well with the treatments but the mind game is beating me down. I’m 54, plans for the future are upside down and day to day a challenge. Postings like yours are encouraging to the spirit.
Saville. Dont let the mind games ruin whatever time you have ahead to enjoy. There are many treatment options that should buy you many more years. Take each day as it comes and try not to worry too much about “down the road”. Who knows, next week a cure might be found.
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I had missed the part about Provenge which I believe is immunotherapy. Is that supposed to be curative and if so, did it not work, hence why you are still on ADT?
Initial PSA 209 stage IV with bone Mets and 4 years + Later Still Undetectable
Completed LuPSMA Vision Trial. I hope my journey encourages someone on this site.
