I've been lurking here for a couple of years but it's time for me to introduce myself and offer up our experiences so far. Please excuse the length of my story!
My husband was diagnosed in the summer of 2016 at age 60 with advanced metastatic disease. It took over five months to find out what was going on--he had a persistent pain in his flank, so lots of chasing around after kidney issues, diverticulitis, etc. etc. Finally his primary doc did blood work and found PSA over 400 and ALP at 932. (This is the same doc who said he didn't "believe" in PSA testing... but we have a choice of one doc where we live, so here we are...)
Hubby's first bone scan was bad--he lit up like a Christmas tree. He was biopsied soon after, Gleason 4+3=7. The biopsy didn't go well--a bit more on that later.
We live on a rural island about 100 miles from Seattle, so we sought treatment at a nearby hospital rather than try to deal with all-day travel to one of the big hospitals in Seattle. Our insurance choices are extremely limited in our county so we have not had the option of treatment at SCCA (Seattle Cancer Care Alliance).
Our first oncologist was a wonderful fellow & he got hubby on Lupron, Casodex, & Docetaxel immediately. PSA came down right away but the treatment has never helped with the pain, so opiod pain meds have become a fact of life.
In 2017 we were advised to try EBRT to try to relieve the pain. Ten treatments @ 3Gy each for two weeks. Never touched the pain at all, but the radiation really knocked him back hard: much fatigue and weakness, which never really abated.
There was never a discussion about treating the primary tumor, but his PSA nadir was 0.8 and usually stayed under 2 which the MO said was castration-level for someone who still had a prostate.
He had two ADT vacations--the first helped a bit with his energy, the second one not at all. Beginning this year his PSA started to rise on Lupron + Casodex and by the end of March it was over 20. Our old MO had passed away in 2018 and the new one started my husband on Abiraterone. PSA kept climbing, and then our "new" MO retired in May and with COVID craziness we spent over two months trying to get an appointment with another one. By the end of July PSA was over 90 and so the "new-new" MO started hubby on Xtandi. PSA is still climbing and the doc said he probably was AR-v7 positive and now hormone-resistant.
PSA is now almost 200 and next week hubby starts another round of docetaxel.
CT scans have showed no visceral mets and generally little progression of the bone mets. Pain is slowly increasing but still manageable with opiods. Five months of Abiraterone and Xtandi have left him almost completely drained of energy. On the old ADT he kept very active, working outside every day, hiking, etc. but now he can't do much of anything. Doc thinks it's the cancer but hubby always felt the second line ADT was just not at all good for him. (News flash: hubby has been off Xtandi for just over 24 hours and already he feels better than he has in months!)
So here's the thing--after reading many, many posts of others' experiences I realize that there is a pretty big spread in how people are treated for this disease. Since we've been going to regional hospitals rather than a big Cancer Center, there hasn't been much (or any, really) proactive treatment. I pretty much have had to do all my own research and push for anything other than the bare minimum of treatment. Maybe the assumption is that if you aren't being treated at SCCA you aren't interested in living for long? Or maybe our insurance isn't good enough? In any case, it feels kinda rotten.
We had three terrible experiences at one local hospital and refuse to go there again for anything, not even a hangnail. The biopsy was performed w/o anesthesia of any kind--the doc said it would be "just a little pinch." When I saw my husband's face as he came out of the procedure I wanted to break up the place... this same office sent the bills to the wrong address and they almost went to collection before we found out... then we were referred to the same hospital for radiation, which clearly was set up simply to bill the maximum amount possible to insurance...but that's a story in itself!
He was never offered genetic testing until three years into the game, a year after I had on my own initiative secured a free Color test from a university study. He's never been offered a somatic biopsy. After failing both Abi and Enza, I asked the MO about getting an AR-v7 test and he said hubby could only get that in a clinical trial. Three times we were referred to a particular specialist only to have a last-minute switch to a junior doc on the team--maybe this last things is what everyone gets, I don't know, but it does feel like a bait-and-switch when it happens.
My husband likes the current MO. The cancer center is big and impersonal but the care seems adequate. But almost all the other patients are elderly and frail, people that don't seem to have a lot of options and/or money. It's a sad deal but that's where we are.
So onwards we go, hoping that the docetaxel will knock back the cancer some and hubby can get to feeling a bit better and find life worth continuing for a while yet. I know there are still a few options after docetaxel, but given what we've gone thru the past four years I feel like we're going to have to fight like hell to get anything past this point other than the offer of palliative care. My husband is a fighter but right now he's worn out, and so am I.
This post has ended up way too long, so I will reserve specific questions for another time. Thank you all for taking your time to offer your experiences and perspective on this forum. Blessings to you and your loved ones!
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WildRose6
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Cabazitaxel is in reserve but he can only get it after he fails on docetaxel AND if we can get insurance to cover it, which given our coverage will be a REAL fight. I am aware of Provenge but none of our three MOs have ever even mentioned it. I'll fight for that too if/when we need to.
Given hubby's bad reaction to radiation he is really reluctant to try Xofigo, and right now we'd just as soon save his bone marrow for chemo--which he has had a good response to the first time and which we are hoping for again.
Thanks for sharing your story and sorry you have to be here at all.
From what you said, it sounds like Docetaxel chemotherapy is a good option for him. There is also second-line chemotherapy Cabazitaxel if Docetaxel should become ineffective.
I hope you are able to get genetic sequencing for somatic mutations because it might open up another treatment option for him.
You could discuss getting a direct biopsy or if it is not possible a liquid biopsy to determine if there are specific mutations which could be treated with Olaparib or Rucaparib and/or Keytruda. Foundation one has a new liquid biopsy:
With the material of a direct biopsy they could also study if the cancer has evolved into a neuroendocrine cancer. This type of cancer could have a better response if treated with cisplatin/carboplatin combinations with either docetaxel and/or etoposide.
He is a candidate for Xofigo (Ra 223) to treat the bone metastases (if he does not have visceral metastases) and also for Provenge to boost his immune system.You could discuss concomitant treatment with denosumab (Xgeva) or zoledronic acid (Zometa) to improve his bone density and reduce skeletal events.
I also forgot to mention in the original post that hubby had a UroLift procedure in July, which really made a huge improvement in his quality of life. Urination is still an uncomfortable chore but it's not agonizingly painful any more.
Taking Flo max maximum dose and really helps after a cath for 11 days due to no peeing, drained 2 liter out of bladder. Am drinking more water etc. , which is also helping.
If it's possible for you to consider the UroLift, please do. My husband is very treatment-averse but things had gotten so bad with the urinary retention & pain he didn't know how much longer he could go on. The UroLift was a lifesaver for him & now he feels strong enough to go thru another round of chemo.
A word to the wise: my husband tried to be a tough guy and refused the post-procedure catheter. Big mistake! He woke up the next morning and realized he COULD NOT empty his bladder! We raced to the clinic for an emergency catheterization... that was one miserable hour. He drained out what seemed like about a gallon of bloody urine. Wore a cath thru the weekend and was able to have it removed after three days, no problems since.
I went down the same road of a GP who discouraged PSA testing. It's unbelievable this was a recommended guideline in the 2010's. You may try Foundation One for genetic testing, it's covered by Medicare, so there may be a good chance your insurance would cover it.
so did we. dr did digital exams but no psa. so disgusted. The dept head at univ of colorado said he sees more young men with late stage pca and it was the worst recommendation that the medical field did.
Lupron & earleada....the fatigue will still be there but ..i was dx fall 2016 and was lucky to get in spartan trial....its expensive and its aplutimide....wich he may have allready tried...not a dr. Just fellow apc fellow ....
Welcome WildRose6... This APC really is a saga for most of us. He’s been through so much already? I understand the fatigue ... Im sorry for the bad experiences with drs. Not good.. many of us have seen mistakes too.. I too am at the behest of ( Medicare & Medicaid) . I’ve been undetectable under this plan so far so they haven’t had to do much beyond giving me adt pills. Hopefully Xtandi will help him. Some others might give you tech advice. ? I welcome you here. Ask anything and a knowledgeable someone shall answer . We are all routing for each other on this ship.. We relate to each other’s plights . Good day to you . Good luck and may things go well for you both from here ? 🙏
Xtandi isn't working, and is off the table . He was soldiering on, but we both knew the drug's effects were making him lose his will to live.
We have agreed since the beginning that the time we have left together is about quality, not quantity. He does not want to simply EXIST, he wants to LIVE.
Our miracle is every day that we have left to be with each other.
That’s the right spirit. Live in the present. No promises are made to any us? I can understand how he feels. I feel the same . QOL is paramount.. when there is zero quality and zero joy it’s time to go . We all deal with the same basic future. But, he does have the WildRise by his side . In this , I believe that he is blessed. ❤️🙏
It’s never easy when it comes to the crunch. It will be good to review all that your hubby has done, so that you may alert the new dr. on his past meds and intervention.
Do make careful and informed choices and the good brothers here will guide and lead.
I am in your area in upper WA state but on the mainland. I have the same issue with insurance and not able to go to SCCA but feel fairly comfortable with the care I have gotten so far at the hospital nearest to me. I wish you the best and I see your fighting for your husband, he is lucky to have you. We all need advocates , I am my own but my wife supports me in every other way so I am lucky. If/when first line fails not sure what I will do but this forum is a wealth of knowledge so starting to engage will be a place of support and information so don't be shy.
That guideline about not testing for PSA was one of the worst things the medical elite have ever done - god knows how many men suffered and died because of that. When I saw that published, I was just appalled at the sheer stupidity and arrogance. F--- epidemiologists and their statistics and their one-size-fits-all theory of medicine! Individual humans are not numbers to fit into a mathematical model, for gods sake. One of my best friends now is suffering from advanced prostate cancer precisely because of that damn guideline.
Besides your husband's own will and attitude, his best defense against an onslaught of medical incompetence, arrogance and dismissal, is ... YOU! My friend realizes too late that he had always been inassertive and acquiescent in his medical care, figuring doctors knew best. Starting with primary care and urologists (he's suing one of them), they most certainly do NOT know best, and frankly from what I've seen in way too many cases they just don't give a damn, and worse, they simply refuse to admit their mistakes. And of course if they don't admit their failures, they will never learn . To save lives, they should just retire.
You may be able to tell that your post just infuriates me and saddens me. It's of little comfort to say that you're not alone, and the only thing I can tell you is what NOT to do: do not, under any circumstances, come to Oregon - specifically Eugene - seeking excellent care. I myself have already experienced that bait-and-switch gambit, where I end up being operated on by somebody I've never met (and once, at OHSU, by someone who introduced herself as the anesthesiologist but turned out to be the one actually performing the procedure as a resident, while the woman who was supposed to be my surgeon watched to see how she was doing - and she performed appallingly). If you can even find somebody qualified, you will have to wait, and wait, and wait.
I'm so sorry for what you've been through and what awaits you - your husband's struggle not just for his life but for decent medical care in (what used to be) the richest country in the world, which has also turned out to be in many ways one of the most savage.
Maybe the best thing you and your husband can learn from this site is actually something you're already doing: taking charge of his care, doing the research and legwork, not taking no for an answer, challenging the doctors (and the damn gatekeepers, aka schedulers) and letting the doctors know exactly what you think. Not rudely (unless you're firing them), but directly and plainly. That's what everybody I've seen post here has done, and they know a lot, and will always be here to help in any way they can. You have the best wishes and hopes and support of everybody here.
There is STILL a huge reluctance to screen for PC.
The current CDC guidelines say "Men who are 55 to 69 years old should make individual decisions about being screened for prostate cancer...
"False positive test results: This occurs when a man has an abnormal PSA test but does not have prostate cancer. False positive test results often lead to unnecessary tests, like a biopsy of the prostate. They may cause men to worry about their health. Older men are more likely to have false positive test results..."
Seriously? A biopsy can save a man's life. "Worrying about their health..." Get a grip, CDC!
My husband was diagnosed at age 60 with advanced metastatic disease, so he had clearly had the cancer for years. Screening at 55 may have saved him from his fate. We don't spend much time looking back nor feeding regrets.
Men are already reluctant to find out if they have PC because the treatment can leave them "unmanned," I get it. But women have been subjecting themselves to routine mammograms for decades, and the fear of cancer. We're continuously bombarded with admonishments to get mammograms or else. Shielding men from the realities of PC is just immoral.
Hello WildRose6, Sorry to hear your saga but there are helpful responses above. One thing that may help, if available, is if your hospital or cancer center has a social worker that can help you navigate this incredibly difficult journey. They often can connect you with services that offer a variety of help for patient and caregiver. My wife and I have been quite fortunate and have greatly benefited with the social workers that have worked with us over the past three and half years at Sidney Kimmel Cancer Center at T. Jefferson University Hospital, Philadelphia. Wishing you all the best.
A tough pathway you have been served up. Sad to read of your travail. We can lament that the PCP "did not believe in" PSA testing, but that horse has left the barn. A good example of the importance of asking questions and self-advocacy.
Hi, WildRose — sorry to hear about how hard this road has been for you guys. Just one quick point to add: the ARV-7 test is a simple blood test — I just had it this week. That would be a good data point for you, so hope you can get that done. Best of luck!
Thank you. It seems odd that this situation--AR-v7 positive or negative--is so important for treatment yet the docs aren't interested in testing for it.
Yes, I will push for the test. This is a situation where I think the level of care we are getting is, to put it politely, not top-notch. There seems to be the assumption that since we're not at a top cancer care facility we don't want any extras.
Hubby has spent five months taking two different very debilitating drugs which may have zero efficacy for him, but no one suggested doing one simple blood test that could have prevented a lot of distress.
Yes WildRose6 you must be the fierce and steady advocate. He is getting the docetaxel chemo which can possibly reverse the ARV-7 mutation of present, and restore some effectiveness to the advanced androgen drugs. So he is okay there for now.
Provenge is “indicated” ( medically appropriate, approved and proven and of value in his case) and therefore failure to refer to a Provenge treatment center is possibly negligence . Insist upon it. It is available at various sites in Seattle and upon referral they will pursue insurance and alternative payments for it as they make lots of money on it.
You said he had biopsy so the specimen may be available for somatic ( tumor ) genetic testing, which is also “indicated”. I highlight that word as you should use it when requesting it. Doctors understand the implications.
Don’t dismiss the Xofigo option. It could possibly be beneficial to him given his bone met pain situation.
We stand with you and with him with out support and caring.
Thank you so much for your words of support. My husband is very reluctant to seek care in Seattle, as it is a hardship for him to travel and any treatment there would require multiple overnight stays and long days on the freeway. We both are in firm agreement that our quality of life together is vastly more important than merely surviving another day.
His biopsy was done so long ago it wouldn't be useful for any somatic testing. It's my understanding that such a biopsy would only be useful for immunotherapy, am I correct?
I'll keep the Xofigo option in mind, but since chemo is our best bet he can't do anything that will risk myelosuppression.
Understand. Good for you both to have your priorities so clear. Yes it may be very late to expect much of a difference from Provenge anyway.
Since the best treatment for the ARV-7 if present is chemo with the docetaxel or Jevtana anyway. You are already covering that base now. Best of luck and keep on loving each other.
I think the biopsy and genetic sequencing could be beneficial, but at this point I can't see the value in the AR-V7 test for him since he is going to chemo anyway. The effectiveness of Taxane chemotherapy will not be effected by AR-V7. The best time to use the test is when you first become castrate resistant and deciding between second-line anti-androgen or chemotherapy. The AR-V7 test might be useful for him after chemotherapy since chemotherapy can reverse the mutation. That is if he wants to go back later and try another anti-androgen.
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Next steps?
Stopping docetaxel at just 4 per Dr - good move or not?
Failed Docetaxel, then Xtandi, what next?
Now I'm really confused 
Standard genetic testing panel for PCa?
