I guess what I'm saying is it would be better to get the time first and pay later...LOL.
My radiation oncologist that had made promises of love to me with words like "cure" and "remission"....if I did 5 weeks of radiation...(to the 3 mets that showed up on my scans)
now, today in my first visit back with him after the radiation, concurred with my regular oncologist that my results are not that good. PSA went from 6.0 to a tad over 2.0. He had murmered "sweet nothings" in my ear of "undetectable" and "stopping Lupron" and "stopping Xtandi"........
now, in the morning after the fling of wild passion....he said to me...."you'll be on Lupron for the rest of your life". Not exactly like him asking for my "hand in marriage" and vowing to love me 'till death do us part. More like, well...."you've bought some more time if the PSA stays stable at 2.0.
Thing is....once my PSA goes down....it ALWAYS seems to go up...hense the roller coaster ride of the journey.
I wasn't disappointed with what he said to me today. After the oncologist and my own study of the results...I concur 100% with him. I just wish he had not broke up with my like this....LOL. All the hope was FUN FUN FUN while it lasted. I still have hope, but it's a much more tempered hope. An "I believe in miracles" kind of hope...a "I'm special" kind of hope.
The romance is over. I'm alone with my pants down....(allegorically) but I have paid in advance "for some time". (as they say)
And (as I have coined this expression and it fits so well here)
"The good news is my bad news COULD have been worse" ~~and for that I am Thankful.
Big social distance/virtual Hugs to all,
gJohn
p.s. I have been on Lupron for 25 months now...and Xgeva for almost as long. When I complained about bone pain/weakness/fatigue/hot flashes/etc....today he looked at me and said "didn't the other oncologist tell you when you started about the effects of long-term use of these treatments? Yes, they did...but hope really does spring eternal.
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Well those 3 METS should be ZAPPED WELL AND GOOD. The radiation had minimal side effects presumably... and your PSA is down to 2. HAVE 2 BURGERS AND A couple of beers!
You can always go back on the fenbendazole. Still not seeing many reports that it works for PC as people taking it, take a load of other things as well!! Probably not as good as the radiation u just had.
I think you're right about Fenben....and the 2 burgers...but I just had left over baked ziti with ground beef in a delicious tomato sauce topped with broccoli and cheese! Burgers will have to wait.
Have you tried IP6? Also, have you read Dr. Shamsuddin’s text “IP6 and Inositol” (Amazon) which is the basis for IP6 use and the extensive research that’s followed worldwide.
I would gladly, without reserve, buy you and all others every last stinking chain of hamburger joints in this whole world, if I could! You are quite the inspiration to me & I know, so many others. 🍔🍔🍔🍔🍔🕊️❤️
Thanks Nal....Well...funny you mention immunotherapy...today is the EXACT 2 year anniversary of my first (of 3) blood draws for Provenge. I know it's suppose to take 18 to 24 months to "kick in"...so "here's hoping". Re. gene mapping, etc. my original biopsies weren't good enough to use...and I'd been waiting for one of the mets to seem big enough to get a biopsy from (after they tried doing it from blood at Foundation One and they said there was nothing in my blood free floating) .....I had the one spot on my pelvic bone that had grown a little biopsied right before I did the radiation. The results came back from Foundation One that there was not enough material to get a result. I'm left hanging....but feeling, overall still amazing (all things considered....Lupron, Xgeva, Xtandi, Chemo, Radiation, etc).
Good to see that your doing well with the exception of having to live in close proximity to all those South beach, shoulder to shoulder super spreaders.
You zapped those 3 mets, and that's gonna "buy you time" for sure, and isn't that what it means to be living anyhow, we're all buying time in small chunks all the time. This sounds like good news, you did the intervention and now you can ride your low PSA for as long as possible. If it goes up, maybe they can zap any new mets, plus you got the Lupron and before you knmow it, its another five years. And in 5 years, new therapies will be around and then the possibility opens up for another five years... and so on, i'm sending you my best vibes for many more years of "bought time"
"Keep on keeping on" with the things that you love, John. Exercise to the extent that you can. Live well. Eat well. Sleep well. Keep those big hugs and affection in your COVID-19 bubble of interactions.
(I've been on ADT Lupron for around 80 months. Sometimes I feel like a 200 lb. Peter Pan mixed with a couch potato. Ha. Ha. I hope I never get the lead role in the play, Peter Pan, and find myself thinking just before they launch me out flying from the stage wings in a flying scene, "Oh Lordie, I hope this cable doesn't break!")
I had LOTS of bone mets at first diagnosis and lots of pain at L4-L5. Instead of Xgeva, I was on monthly Zometa (zoledronic acid) via IVs for 29 months in a row starting in Nov 2013 at age 65, then persuaded my local Onc to dial it back to every 3 months, until stopping it altogether about 5 months ago. Probably enough in my bones to last me "forever" (especially considering my more recent diagnosis/prognosis with concurrent metastatic melanoma). Initial Lupron ADT + Zometa reduced the bone mets "appearance" on my early NM Bone Scans by at least 50%, while my original PSA dropped from 5,006 to 1.0. I never had any adverse effects from Zometa. I got regular dental cleanings & check-ups. Never got a hint of the relatively rare Osteonecrosis of the Jaw (ONJ).
I've been on added Xtandi since Nov 30, 2016 (after having Provenge, which did not affect my PSA). It took my roller coaster PSA back down from 95.0 to 1.2. Increased background Fatigue and significantly reduced peak energy and stamina were my main side effects on Xtandi, plus a little bit of gynecomastia.
In late 2019 my PSA started creeping up a few points here and there, and more recently got up to 17.7. Scans still looked pretty stable, though. My local Onc. and specialists at UCSF advise to keep riding the Xtandi horse for a while longer, all things considered. Lately, I've been more concerned with the metastatic melanoma. I've had one surgery into the side of my neck removing 35 small (and one enlarged) lymph nodes, and am on every 3 weeks treatment of Keytruda for the past 4 months, to possibly last up to a year. A 3rd "lump" has recently become palpable within that same side of my neck. Will get the results of some more recent CT Scans later this week. They will show what they will show.
You have done a lot! In the battle analogy I would call you a great warrior. In my preferred journey analogy I would say you are truly an experienced and seasoned traveler. Let’s pray for an even, easy path in your (and our) future.
I am a "super taster". Food is huge to me. I have been cooking since about 8 years old. I would say it's my obsession. I love vegetables...but I just can't "put down my knife".
I find the way a tiny bit of butter tastes on a bowl broccoli is heaven. I love how a juicy steak tastes. I eat a lot more vegetables, especially salads, than most people I know. But I also eat meat. I love meat. I don't think I would like to use that as a way to "buy" a bit more time...I'd rather be eating a piece of prime rib and go quickly.
I would say that I give people who are vegetarian lots of credit for their sacrifice....but I find from watching them that most are NOT people who taste food the way I do. They wouldn't feel the sacrifice I feel. My partner could easily give up meat....he'd rather eat a donut, or a slice of pie than any savory item. I put desserts....WAY back on the burner of my favorite foods. I think that is the difference.
But THANKS...I know about this and always keep considering it...and, who knows?...my tastes may change and I might go vegan!
**during my recent radiation they told me to avoid salads and raw vegetables. THAT was very hard for me. Salads I actually crave!
He will love you for the rest of your life, John. I am certain of that. So will we all. We will love your courage, your humor and your forebearance. [hmm,. autocorrect does not like that word].
A principal topic of my support group on Sunday night was the question: if the doctors told us the full truth of the effects of treatment, would we take it at all? The general experience in this forum--and mine--has been the withholding or the sugar-coating of information about side effects of RT, of RP, of ADT and of chemotherapy. One has to wonder what are the motives.
Dealing with the same question here. Specifically how long can it actually take for adequately irradiated mets to involute and completely die / disappear after SBRT? When RT is used for primary treatment of the prostate it can take 2 years or more to reach the true nadir. So does that apply also to slow dividing PC in mets elsewhere?
I’m 6 months out from pelvic LN RT. PSA down by half and trending slowly down off ADT (.258 to .135).
Don’t know whether to take my burger and beer in celebration or disappointment. Actually I will celebrate being here, being alive and so many other wonders. Cheers
That sucks (sorta). I told myself last night that all my doctors from here on out won't be the happy chipper types. It just doesn't suit my personality. I have a rare neuro disorder and my doc told me at our last visit "you will never, ever get better" 😁 But you know at least he was honest. Anyway, you look good. Keep on keeping on! Stay strong!
Wow, I love the way you wove so much whimsy into your post! I just met with my radiation oncologist yesterday, and he is definitely not a "people person". He said directly to me "I'm not going to promise any cures, but I think I can buy you some time". Yeah, um, don't you know I'm special and destined to get a complete remission?
At the other extreme, my urologist has said vague things like "I've had patients live 10 years". Gotta wonder if he's referring to his advanced cancer patients or just the ones with prostatitis.
Keep up the good fight, and thanks for putting a smile on my face this morning.
Hi John, we all draw strength knowing we all fight the beast. As my doc told me 10 years ago "you are going to have to grow old gracefully a bit earlier than you planned. Time to put on your big boy pants". I am thankful for every day I wake and embrace the struggles as the refiners fire. Your great attitude will rule the day!
Thanks for putting a smile on my face while I was reading your post! I found it very entertaining. Although I am sorry your lover did not come through for you, but I love your attitude! I can also totally relate to your foodie taste-buds. I am always looking forward to my next meal and meals beyond that. (I am on the thin side) If I had to go completely veggie I would be pretty miserable. Best of luck to you!
Breaking up is hard to do...hard to find a good RO theae days. If they cant cook, bait their own hook, or balance a checkbook it may be a pass LOL.
Both my MO and RO havent pulled punches. LUPRON for life, no cure but maybe we can get to a chronic condition with new treatments.
They dont talk life expectancy, just the facts and let me discuss options. In fact MO agreed with me on post 2nd chemo to consider rechallange of Xtandi with a recent approved Paribas. Hes looking into that as well as an immunology trial that he is excited about. Ans he baits his hook ( although he is more a fly fisherman). Hope you recover from your fling gone south. Love and cancer are both fickle.
Know how you feel, and I have had same thing happen to me after having similarissues like you. I finally had to change oncologist, 2 months ago and am at least now I have someone
that I can trust and who actually cares about treating me.
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Two questions re Prostate systemic disease.
PSA rising, won't be able to escape ADT. Any tips for brain-fog and depression handling?
First PSA is 0.2 after Radical Prostatectomy 6 weeks ago
How do you find a good oncologist and how do you overcome the side effects of Lupron?
Sally Jones-oncologist??
