Honestly, I think the answer for me will be from the responses of all the respected people I've learned so much from on this site.
I'm 59, DX April 2017, widespread bone mets up spine, skull, ribs, upper body. A couple of the biopsy doctors wondering how I could walk much less touch my toes. No spread to lymph nodes or any other soft tissue. Lupron and chemo in May 2017 and through out chemo cycle treatments with Lupron, my MO was never happy with my PSA levels. His remark that it bounces around too much. In fear Lupron wasn't doing enough and knowing more cancer drugs would be coming, I had surgical castration in September. Mid October all new scans were done to compare to baseline scans and the chemo did a nice job eradicating most all of the out lying mets but only about 60% of the mets covering the spine and upper back. PSA was 1.0, all and all, it was considered a success. Insurance won't allow Zytiga yet.
I went back to see my MO the 2018 new year and the PSA had jumped from 1.0 to 6.71 so we did another round of scans. NO new growth, two places on my middle spine grew from the size of a dime to a penny, (me expecting to look like I did a year ago, so I was relieved, the MO is all concerned). I start Zytiga and get an appt at MD Anderson who confirm my past present and future treatments. Two months of Zytiga and PSA goes from 6.71 to 1.26, some good news for once. MO pleased for once. A month passes by and a scheduled blood-work appt with PSA and it goes from 1.26 to 1.99, yep, that's me. I inquire if I should refill the Zytiga since I'll run out before I see him again and he calls and he says yes fill it, this is "worrisome".
The next day I get a letter from the insurance company approving me for another dose of Docetaxel. Knowing my MO, he isn't checking for the late summer or fall, he is going to bring this up on May 30th on our appointment.
I've had two MO's tell me this is going to kill me. I feel better today than I probably have since the first day of chemo. There are a lot of physical things I could do I can not do now because of chemo. If I take this chemo again, will I be able to bounce back to this level again? Right now, I have plans and don't want to interrupt me and my wife retirement moving plans because I'm not able to because of chemo, I'd rather wait until we've moved and then take it. Will delaying the treatment 6 months really make a difference. Will taking chemo really help anyway? I don't want to swap months for months. All advice will be appreciated!
Thanks again to all for their support and wisdom!
Steve
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This is a tough decision - sacrificing short term quality of life for long term quality of life. There have been cases where docetaxel has restored sensitivity to Zytiga. It sounds like you could be taking both simultaneously, which may be an especially powerful combination - the trade-off is the added side effects, of course.
is your MO concerned that the spinal mets may eventually cause spinal compression? If so, perhaps one or two doses of SBRT to them may prevent that.
Thanks for the reply, and yes, he has mentioned most of the above including the chemo in the future. He had not mentioned repeating the chemo this soon and the insurance letter gave me the haeds up he is wanting to repeat it. I have no problem repeating the chemo but I’d like to get my life in it’s final location for it’s final stage as I know I can’t sell a home, move, get settled while I’m taking chemo if it will be anything like the first treatment. Will waiting six months really change my future by that much? Thank you.
I can't predict that. I only know that chemo sooner extends survival more than chemo later. And the side effects are milder when used earlier while you are healthier.
Has your MO discussed Xtandi or possibly Cabazitaxel with you? Also, according to some, Docetaxel has been known to help with a successful re challenge with Zytiga. Of course you have already somewhat followed that protocol.
all the MO's say it's gonna kill you...you got a tough choice...good chance chemo might not work again....If it were me I would try Xtandi and then Apalutamide and go on vacation
Doesn’t Xtandi have some pretty wicked side effects? I’m not against taking chemo again, I only want to wait 6 months and get my life and wife settled in retirement first.
I do the chemo and zytiga and prednisone. A little weaker, but psa down to less than one and bloodwork looks great. I excersize to stay strong, not as strong as I was but ok with that..
How long has it been since your first chemo treatment? I didn’t realize there were different doses. One of my main fears is a year later, I get fatigued so easily, I can’t do so many things I could do before I was diagnosed and was covered up with cancer then. I blame the chemo and the drugs on that fatigue. If I take chemo again, am I going to become even more weaker and fatigued afterwards and eventually not able to bounce back to the level I am now? Thank you.
Diagnosed 5 months ago. Started on Chemo a month later. I'm not as strong as I was, but testosterone PSA is near zero. I exercise and work on my firewood for next winter. Feel good, can eat again and hope to be around for awhile. Been married for 47 yrs and retired 2 yrs ago. Just not as strong as I was. You have to walk and exercise.
I would call Dr. Kwon for second opinion -- see what he thinks -- your case doesn't seem any worse than many others who have survived for 15 plus years.
your prostate cancer sounds like my prostate cancer. It has a mind (an evil one) of it's own! ...every time my PSA should go down a lot...it goes down a little...and then likes to pop up a little. I started with Stage 4 same month and year as you(3/17)...with just a few bone mets in pelvic area and a few lymph nodes in pelvic area. After Lupron in March and then Chemo in October...my PSA had only gone down to 1.3 at the end of chemo in Feb of this year...and it's bounced up already by the next PSA to 1.83. I'm also close in Age...61...in January. I'll be watching you....I'm currently still just on Lupron...but pretty sure when I see the MO on the 29th of this month...he'll be adding "something to the mix". Best of Luck! ~~John
John, I agree, we are very similar and in timing. I’ve read and responded to many of your posts. I often wonder if some men’s PSA is like other people’s cholesterol, it’ll never settle but yet they never have a heart attack and are thin and healthy like many of us. Hey, I can dream. My guess you’d go to Zytiga, I think insurance requires a rise in PSA now after chemo on HT before paying, or mine did. I think you also qualify for SSDI if you haven’t signed up.
Thanks for the reply....luckily I got on disability before this nightmare started for nerve pain (fibromyalgia) 6 years ago...just 2 years before I started with "regular" prostate cancer and started all those treatments...my timing on that (at least) ...seemed excellent!🤔
hmm, at some point, and this is also a topic that should go into our booklet, at what point does one say enough is enough?? As we all know, the last few months or more in this battle, are not worthy of being around for-my opinion, so opting to rock on and squeeze the best that one can while one is still able, is a sound decision, based upon the sad fact that nothing will change and extend one's life beyond a few more, what months of pain?
We do not talk about end of life etc. and nobody around us seems to want to either, including the medical people, so we have an absence of good advise that, were we dealing with a family pet, would be easy to make, do not suffer is what we would both think and react to for it.
Death and dying will take all of us at some point, we just have a better idea than many. Wish we could have someone come back and tell us if indeed some great future awaits us, so we would have good reason to depart earlier.
Make peace with those you care about, do some good things with money if you have lots, and get out your bucket list and try to strike a few more off of it, have a couple of drinks, sit in the sun and relax!
Wow, very well written, and your right, there isn’t much talk about the end because there is nothing to talk about.
So, my question: Today, I probably feel as good as I have physically since chemo in May 2017 one year ago. If I take chemo again, will I ever feel this good/strong again? If you can’t promise yes, I might be fine for years and then go down hill, then chemo maybe, but not now.
No avoiding , we all in the end have the same outcome. Quality of life , on my opinion is the most import factor for #4 APC. After treatment if so lucky up get some quality time without too much suffering TAKE ADVANTAGE of this time. I have no signs and no PSA for 2out of my 3yrs of treatment. Still Why do I feel so dis -shuffled.. easy answer my urology is wack a doodle and I have no male hormone whatsoever .. We are all living on borrowed time once we enter the wonderful world of APC. I for one , am happy to be alive. I pray constantly and thank God Everette second for the beauty around me. When or if things turn south for me again there will be hell to pay. Chemo and such. Better have fun now. You are correct it hard to want to keep doing treatments and poison our bodies in an attempt to kill PC.. Boolyboy3 follow your own beat..I will keep drumming til I can’t drum no more we will all reach that point some day. TG today is not that day for you and I. So find light seek some kind of simple happiness every single day. No body is happy all of the time. I fought those battles of suicidal thinking and self destructive behavior. It kills anyone that cares for us. I here for my precious wife that married me after my dx #4.. I owe her to fight to the lady drop and try to give her some happiness in the meantime. Not being the macho strong guy that I was prior APC. I had tremendous energy in my life. Now limited to say the least. Life goes on for the wicked. The good die young. Where does that leave us.??? No so simple. Hang in there! Sorry for all of the anguish. I’d say we all go thru the same thinking. Take care
Christians we believe that Christ did come back... but not for long... the devout still wait his return. We humans hope and pray for salvation and a crown in heaven waiting for us. In the meantime we’re Suffering. I’m not too bad right now. So I have no right to complain. . Peace to brother. Hope we each find our way thru the madness.
I’m being treated at a top 10 cancer center in U.S., highly respected, Big D, Texas. I know my MO is always pushing all labwork be done, or anything be done within the hospital network. Big revenue, big budget, big quotas! I am Lucky to have incredible insurance from my wife which has remove any financial burden I know many of you face every day. Anything my MO requests usually gets approved through insurance.
Could a doctor be pressured into accelerating known future treatment to help satisfy revenue needs or to support clinics that are his responsibility to fill? I know it is not supposed to get talked about, but you can bet... It gets talked about!
That is exactly what is all about...Money...I went to The Mayo Clinic for their BS Oligometastatic Treatment...$450,000 later and it did not work...now every 3 months I get a call "Come on Down"..like they really care...I had a team of 4 Docs and each one smiles an shakes my hand and then they repeat all the scans....Choline 11 - PET - MRI and some other BS and bill me $36,000...then the MF pressure me into making a charitable contribution so I can get my name on a wall
That’s what makes me wonder too. He called me, says, next time in, (May 30) he wants to repeat all the scans, and see what has happened since I started ZYTIGA. Well, if my PSA went from 6.71 to 1.26, I’d say nothing happened on the scans or not enough to get all twerked about. Now I deduct he’s wanting to toss chemo back in there too, hell, he might be one patient away from the Presidents Award Bonus this Quarter and I’m his lock to win it.
Whoa the cost of Mayo naise is up! If you got the doe, they’re happy to take it . Quality doesn’t come cheap. I’d rather donate to orphans than Mayo Clinic , if I had that kind of money. Which I don’t. Take a trip around the world instead. There a guy in a yurt in Mongolia that curing cancer patients with his cultural healing techniques . Spiritual healing is important also. Thanks for sharing.
The bottom line is always a factor. You are covered by great insurance. Good for you. That’s how it supposed to be.
Tough. Question. What caused your insurance to send an approval for chemo? A letter by you; or a later by your Medical Oncologist? Insurance companies just don't send letters without a request.
The MO requested it, I got copied on the approval letter, he hasn’t mentioned it to me. I assume it will be our topic on May 30th. The only revenue I generate is blood work and an Xgeva shot right now with a big dangling $$$🥕 justified and approved, (but maybe not necessary yet), but it’ll keep ADMIN off my MO’s ass this week. Is it wrong to think that way?
I think it is wrong only because I would hate to go through life thinking in negative terms. It is more preferable to believe that your Medical Oncologist really wants a win on his side (meaning a win for you also). Teaching and research facilities depend on grants to exist. Grants are more forth coming with wins rather than hopes.
to the medical establishment you are a walking $.....IMO when a guy fails Xtandi - Zytiga - Apalutamide all treatments that are not that bad...it is time to eat whatever you want and do whatever you can afford and then go where the whores go...straight to Hell....shovel coal for 8 hours...rest for 8 hours....mess with the whores for 8 hours
I’m on Xtandi,Lupron (eligard ) and Xgeva at this point. Stage 4 20 months ago with spine,ribs and lymph nodes. Had 6 rounds of chemo .
It is a crap shoot if you defer your treatment. But I understand the need to get your life settled. The Xtandi is supposed to be a chemo type drug ask your doctor about it. Can’t hurt except very expensive
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MO wants to pause Zytiga when PSA reaches 0
Bad news or 'routine'?
Hormone Therapy failing?
PSA <0.04 to exactly 0.05
