We are still reeling from yesterday’s appointment. We were feeling like my dad’s treatment plan was going well and then boom, on the way home, received a “my chart” alert and his psa is up from .9 to 9.9 in 3 months. He started on Lupron and Zytiga just ten months ago and is already failing. Next steps are a bone and ct scan and I am hopeful they’ll schedule him today for that. I am assuming we will meet with the oncologist after the results of that are in. We are at the Cleveland Clinic with Dr. Garcia.
Now what? Does this mean years have been shaven off for him? Is he castrate resistant? How is his psa going up so fast and so soon?
He was diagnosed late stage .. bone Mets. PSA over 100 and Gleason 9. Ugh.
Thanks in advance.. your wisdom always helps me keep my head on straight and reassure him (if I can even do that anymore)
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Stumpgirl
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Breathe, calm, relax, it's NOT the end. 9.9 is a lil more than moderate but not untreatable, let them offer some other androgen alternative and stick with that for a while, lupron and nilanton are actually old and outdated, look up new androgen chemo therapies, ill send ya some examples in a few min here okay? Calm relax easy it'll get better promise, you just gotta find the chemical that works and it's out there.
Done. Trials is an option and even some things i cant remember the names. I was 9.8. Xtandi brought it down to .02. I know it wont last forever but ill move on to other things like chemo that sometimes will give zytiga andXtandi a second chance. Their is lots of people here that are surviving wit mets a very long time.
Do you mind me asking how long you were on Zytiga and how long you’ve been on Xtandi? Is there cross resistance between the two? My dad started with the combo which we thought would be more effective ..
Radium 223 to treat bone metastasis...your dad is CR because PSA went up on Lupron/Zytiga from .9 - 9.9...yes there is cross resistance with Zytiga/Xtandi...when one fails the other usually works for only a few months but not always...another new drug is Apalutamide which was approved for CR without metastasis but your Doc can probably get it approved....what is your opinion of Doctor Garcia
Thank you, Gus. Dr Garcia has pretty impressive credentials. He is the director of advanced prostate cancer research at Cleveland clinic. I will be curious to know what he suggests next for my dad. Our research is terrifying us in that my dad’s time to resistance was so quick and that life expectancy is likely much shorter than what we’ve all been praying for .
The most reasonable next step would be docetaxel. That should give him relief from any bone pain he may be experiencing. It has been known to re-establish sensitivity to Zytiga or Xtandi - so after 6 three-week infusions they might try to rechallenge. If docetaxel works for him, he can keep doing cycles until it no longer works, and then they would move to Jevtana. Xofigo and Provenge are reasonable options as well. Plus there are many clinical trials he should ask about.
Are there many chemos available or just this one? Basically you keep using it until it no longer drives your psa down? I’ll be interested to see what they do after looking at his scans. I’m assuming they’re requesting those to see if there has been any disease progression
The only kinds of chemo used for almost all prostate cancer are the two taxanes, Taxotere (docetaxel) and Jevtana (cabazitaxel). Sometimes they add platins (eg, carboplatin) if certain rare types of prostate cancer are suspected.
It is important to assure that Zytiga has failed using PSA as well as bone scans because PSA alone isn't always a reliable indicator. They might also look at other biochemical markers like bone alkaline phosphatase, Chromogranin A, etc.
Hello Stumpgirl, I cannot really give you best advice than the people that wrote here because I am still learning but one doc told us that after abilaterone the next step is dotexatel as Tall_allen said.
Keep us updated and best of lucks with the new treatment.
If progression is determined on Zytiga, I wonder why they would not switch to xtandi. I did get a much longer response to xtandi than I did Zytiga after Zytiga failed,It is worth a try. I have since progressed and have been on chemo since 2/17
Hi Dan. They may suggest that. They are doing scans first. Do you mind sharing your response times to both? I follow your posts on here and appreciate your openness to sharing all you do. I pray chemo has a very good outcome for you. Kelly
I was on ketoconazole, which was the precursor to zytiga for a few years, I then responded to zytiga for just under a year, and got 2 years out of xtandi. They doubted I would respond to zytiga after ketoconazole, but I did. I think it is important to try all of these therapies, and get as much out of each one.Lupron likely will be ongoing. I would think at this time he should be getting a monthly psa IMO. I wish you both the best and keep us posted.
Do not neglect taking care of yourself as a caregiver and maybe even see a counselor. When my father had cancer in his 70s it overshadowed the whole family but all 4 siblings managed to help out in their own ways. I think the time I spent to help care for my parents in their old age may have contributed to me neglecting having my own cancer detected early enough for successful treatment "Caregiver Syndrome". I did what what I could for them but still tried to live my life as normally as possible. Those who have children that help with their care are blessed.
You didn’t say if he has had chemo , they have me on Xtandi, (chemo drug ) elegard and Xgeva to keep mine down as they won’t remove the prostate. The Xtandi has kept the PSA dowwn to .05. Don’t give up there are lots of options ,the scans will tell you what’s going on. Mine were yesterday. Nothing new 😀😀😀😀
Hi Larry. Thanks for responding. My dad’s cancer was found in stage four last year. It had already spread to his spine - all quadrants, femurs and ribs. He was in immense pain and fatigued which finally forced him to go to the doctor. They immediately began him on casodex and Lupron. The Stampede trial has just concluded and his onc (who was a part of it), put him on Zytiga as soon as it was approved. Of course we’d hoped and prayed he would get some longevity out of that. The weird thing is his psa plummeted and as of two visits ago was .33. The doctor felt statistically we might be one of the lucky ones as the psa levels at month 6 i believe seemed to matter. We were stunned Monday when it measured at 9.9. I am afraid his cancer is super aggressive. So, he has not had chemo. He is scared of it. Who wouldn’t be? Our scans and appointments are Monday. I can tell by how he’s walking, that he’s in pain again (not nearly as severe as before). He said ever since they told him his psa was up, he feels worse and doesn’t know what is psychosomatic and what is real. 😔
I was diagnosed stage 4 with Mets on spine,ribs and lymph nodes August 16, doctor immediately went for chemo 6 rounds. The shots of lupron and Xgeva monthly. PSA went away. I am 67 now was in great shape when diagnosed,the chemo really wasn’t that bad for me as I was scared to death of dying. The worst part of chemo was a shot the day after for the blood it would put me in bed for a couple of days after. Your doctor can advise after the scan as to whether the cancer is growing or not. For me it worked and I wouldn’t do anything different. Good luck. This is a was you are fighting and just one battle to fight at a time. 🙏🙏🙏🙏🙏🙏🙏
I have been in this battle for almost six years (please see bio for complete treatment history).
Current state of art scan is Axumin PET/CT to locate soft tissue mets.
As others have suggested, Radium 223 is the current best treatment for widespread bone mets.
I had Zytiga first for about 18 months then Xtandi for about 12 months. After recent chemo with Docetaxel/Carboplatin we rechallenged with Xtandi and it is working a second time!
Suggest he get a Guardant360 liquid biopsy to look for genetic defects. It takes only 2 vials of blood. Once for me, results led to use of Lynparza, a PARP inhibitor, for about 9 months.
Bottom line, lots of options to use to fight back.
The tricky thing about when to do chemo is that he has to be strong enough or it will kill him. He cannot wait too long. That is why nowadays the trend is to do the chemo first when he is the strongest and can withstand the side effects the longest. My husband refused early chemo because he was lecturing and feared "chemo brain fog". Nine years later he has been on docetaxel for over a year. He had to retire 2 1/2 years ago because of a clinical trial drug that had him actually on his knees with a "brain fog" worse than any "chemo brain fog" that kicked him out of the trial.
I agree with Mark. The genetic testing is important on many levels; in guiding treatment, avoiding costly (in terms of quality of life as well as money) treatments that won't work on his set of mutations, and in determining the germ-line risk for the family, not just your brothers (and his) if there are any, but also to you. Awareness and early testing leads to much better treatment options and outcomes.
Thank you . Is there a limit to the amount of chemo you can do? Or the amount of times you need to receive it? My father, other than back pain, while 73, is in otherwise great health. Until this horrible cancer, he worked out and played racquetball. He’s put some weight on with the steroids so I actually hope it will serve him well as we head into this next phase. I am so sorry for what your husband is enduring. It’s torture to watch those we love suffer.
I am definitely going to advocate for genetic testing. I believe Dr Garcia will want it too.
My father 77 with CAD (9 stents) and he did surprisingly well with chemo ( Jevtana and carboplatin) unfortunately they did not help defeat the spread of cancer. His biggest issues were constipation and diarrhea. We tried fasting and icing hands and feet. He didn’t lose much hair (only 4 rounds) and no neuropathy. Everyone’s journey is slightly different. This site has been nothing but a blessing for us with a wealth of info! Good luck and big hugs!
Chemo is done in cycles, usually 3 weeks apart, so the patient can have time to recover. For prostate cancer, normally 6 cycles.
A major issue from Docetaxel can be peripheral neuropathy, numbness/tingling in hands and feet which may be temporary or permanent. Many patients, me included, ice hands and feet during infusions in an attempt to mitigate this.
My fathers as well, please take a look at our posts but my fathers went from 20-89 in 3 weeks. And then to 98 in 2 weeks.. he has tried Xtandi and failed, chemo and failed and finally... Zytiga after chemo seemed to be the first time we have seen a decline in PSA. Keep your hopes up there are
So many possibilities and so many options there is something that will work at lease to buy time and enjoy life.
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Things have gone from bad to worse; need some hope and guidance.
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