After Lupron fails: Hey fellas, I'm... - Advanced Prostate...

Advanced Prostate Cancer

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After Lupron fails

deano58 profile image
9 Replies

Hey fellas,

I'm just curious about the guys here who became castrate resistant, how long has it been since, what is your experience, treatments, QOL, etc.

Is it really the beginning of the end, as the medical "experts" say?

Thanks for any encouragement,

Mark the Worrier

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deano58
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9 Replies
RyderLake2 profile image
RyderLake2

To quote Bobby McFerrin "Don't worry be happy!" After four and a quarter years, I became castrate resistant in September 2017. Three successive PSA rises on Zoladex (goserelin). My medical oncologist kept me on the Zoladex train but added Xtandi (enzalutamide). PSA rapidly dropped. It has been undetectable (less than 0.008) since March 2018. Other than fatigue, a few aches and pains and a bit of memory loss I would say my QOL is pretty darn good for a young man of 73. Good luck Deano!

milto27xabc profile image
milto27xabc

diagnosed 2005 braccy , lymph node 2007 ,lupron and casodex until 2017--added Zitiga in oct 2017, PSA and Testosterone close to undetectible severe fatique side effect. But hey I'm 86 so feel very lucky. Good luck Deano

scarlino profile image
scarlino

Diagnosed in 2012 at 56. Proton Radiation in 2013. Biochem failure in 2015. Been on various clinical trials since then. Latest is Zytiga, apalutimide and prednisone and Lipton which is now failing after 18 months ( PSA 14) but still seems to be in lymph nodes. I would say keep a positive outlook about the “beginning of the end”. Doctors can no more predict that than have knowledge of that “they got it all”. Worry doesn’t help; living your life does. Be blessed and keep pressing on. More treatments are coming!

j-o-h-n profile image
j-o-h-n

The day you were born is "the beginning of the end"...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 12/15/2018 10:27 AM EST

Stegosaurus37 profile image
Stegosaurus37

I was diagnosed as castrate-resistant over a year ago, and the oncologists were unanimous that I had only "months" and just said 'how do you want to spend the rest of your life?" Nobody thought I'd survive past the summer since my cancer is supposedly very aggressive. Yet here I am, pain-free and the fatigue gradually lessening. Most inconsiderate of me to hang around like this when I'm supposed to be dead. Don't believe any doctor who makes a prediction on the date of your demise; they don't have a clue. Scarlino is right; more people die of worry than anything else. It's a beautiful world and a beautiful life. Live it! Attitude is everything.

There have been extensive studies of why people in disasters survive while others don't. They've found that the one critical factor is not how well you're prepared or the quality of your survival gear; it's the will to survive. The ones who refuse to give up have a far better chance than those who let go. Never quit.

deano58 profile image
deano58 in reply to Stegosaurus37

Hey Stegosaurus37,

Thank you .

What you said about never quitting has really stuck in my mind ever since I first read your post.

ctarleton profile image
ctarleton

I had an initial PSA in the thousands. Lupron took it down to 1.0, and kept it down for around a couple of years. During the 3rd year, and some consultations, and some Provenge, I eventually went on to add Xtandi with a PSA of 95.0. The added Xtandi took the PSA back down to 1.2 within 6 months, and my PSA is currently 2.2. Last month I was a 5 year survivor of my Stage IV prostate cancer. QOL has been the usual hot flashes (which are not so troubling now), the usual bodily changes that come with low testosterone, and, since adding Xtandi, an increase in the likelihood of fatigue. I've made practical adjustments and workarounds between age 65 and 70 as my physical capabilities and stamina have slowly changed. I have found the mental and emotional aspects to be as much or more important as the medical/treatment side of things. Local face-to-face support groups have also been very helpful for me, and my spouse/caregiver.

Being overly anxious or worrying about an unknowable future, in my experience, is seldom helpful. Getting those fears out into the open and "living with them" for a little while can help defuse them. Living and loving in the Present Moment as much as I can seems to work better for me. I remember a few years ago when I found myself asking myself, "Am I Living today or on my way toward Dying today?" I've experienced much better results and more calm when I chose "Living". I may never be completely Cured of my disease, but I and those who are close to me can certainly be Healed in many ways for as long as I may live.

Just some thoughts...

Charles

NPfisherman profile image
NPfisherman in reply to ctarleton

Charles....great reply...keep living large, fella...

Tippler profile image
Tippler in reply to ctarleton

What a wonderful story! I learned in AA that TODAY is what really counts. I have found a part time job that helps me with the workout and the cost of meds. The challenges of the job are physical and mental and that's good medicine.Last night I slept for 8 hours straight! Thank you for sharing, sir.

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