Hi everyone, after four months on Zytiga, my Dad's PSA went back up. Due to the coronavirus the doctor wants to avoid him going to health facilities so he will not be ordering scans and doing Taxotere as was the plan.
My Dad will now be starting Enzalutamide. Can anyone offer their experience on this drug? Has anyone tried it after Zytiga and was it effective/non-effective? Thank you all so much for any replies.
It didn’t work for me after Zytiga so after 3 months I was done. I think the SEs are worse than Zytiga. Also For some reason taking ibuprofen caused a lot of blood in my urine. So be careful.
A 3-4 month time frame is typical for this switch. There was trial comparing second-line Cabazitaxel chemotherapy to a switch between anti-androgen drugs. The median radiographic-free survival was 3.7 months for the anti-androgen switch.
Thank you gregg57. If it weren't for the nature of what is going on in the world right now I would be pushing for chemo, however I understand and agree with the doctors decision that right now this is the best option. We are just hoping that Enzalutamide works for a long enough period of time to get us through some of this Covid-19.
I think I would do the same thing right now and kick the can down the road as far as possible. I may be having to make the same decision soon. I'll find out in May if Zytiga is losing its effectivity. I was planning on going in at the 6 week point for a blood test rather than waiting 3 months just to see what's happening. I've decided to skip that as it is not essential. It was my idea and not the doctor's anyway.
Gregg57 I'm sorry to hear that you may be facing this same choice too. I hope that you don't have to and if you do that this has calmed down a bit by then to make it safer. I really appreciate you taking the time to answer this!
Thanks for caring.
When I first started with this, every setback, bad test result and new treatment decision was traumatic. My time was filled with too much negative emotion and worry about every imaginable scenario.
Now, much of that feels like it's been used up. I just don't get that distressed over this stuff any more. My quality of life is better for it. All of this cancer stuff feels more impersonal, more robotic. When it comes to evaluating the disease and making treatment decisions, I have become like an emotionless flowchart.
As much as I wish no one had to go through this, I lean towards thinking that how you are handling it now is a good way to do it.
My dad unfortunately is absolutely and understandably devastated and depressed. It is heart breaking to see. I wonder if time will make him process things as you do now. I don’t blame anyone for how they deal with these pieces of news, everyone is different-I agree though that quality of life is the most important. I know that is all I want for my Dad.
Wishing you well Gregg
I do want to say that at some point the decision for continued treatment will take priority over the risk of contracting Coronavirus. Like many others, I'm trying to put off going in, but at some point the risk of untreated stage 4 prosate cancer does outweigh the risks of Coronavirus. It's hard to have to make this decision, but that's the situation many of us are in.
Yes I agree with you. We've decided with the doctor to go with Enzalutamide, but I've told my parents that despite the risk I think it is important that my Dad doesn't wait longer that 4-6 weeks after starting to get a blood test.
His PSA was at 7 at the end of January and 8 weeks later it was 34. Although the risk of coronavirus is scary, this cancer really seems to have figured things out. We need to make sure that what we are doing it working or we need to move on.
Gregg,
Well spoken and pretty much the way I feel right about now. After 16 years of prostate cancer, hospitalization for a heart issue, add to that macular degeneration on both eyes, a brain tumor nearly 1 inch in size, a slipped disk in my back, 2 hernias, horrible memory loss, and other minor issues like A-fib, I pretty much rake things as they come. I have to because both my wife and I are octogenarians, the wife has advanced Alzheimer's and I am he primary caregiver.
Ouch.
After 3 years, I'm with you on this. Now if only I could get my pee to flow.
Thank you Hex40. By ibuprofen, do you mean, for example, advil? That is what my Dad has been taking to manage the aches he is experiencing.
Same, same. Zytiga became ineffective and I was switched to xtandi. PSA dropped a little the first month and has climbed for the next four. I’m now at 3.76, but I doubt I’ll be put on IV chemo until this caronavirus crap is under control. For me, increased back pain and diarrhea were the big changes. Biggest help for me was a good workout at the gym, but the virus took care of that! Good luck!
It is likely to be effective for a short while. Maybe long enough to ride the covid-19 protective measures. He can also try switching to dexamethasone first. Email this to his oncologist and ask for a response:
onlinelibrary.wiley.com/doi...
Thank you Tall Allen, I will absolutely email his doctor about this. The doc said one good thing about coming off the prednisone is that that can make one immunocompromised (which is not a good thing right now), I'm not sure if dexamethasone does that too but I will certainly ask. Thank you so much for taking the time to answer.
The steroid doses with Zytiga are too small to cause immunosuppression so you don't need to be concerned about that.
FYI- my wife is a radiologist and informed me that dex is even worse than prednisone when it comes to compromising one's immune system .
I think your doctor is incorrect that a replacement dose of prednisone or dexamethasone is bad for the immune system. The steroid one takes only replaces what is depleted by the Zytiga and does not lower immunity in those doses. Both too low cortisol and too high cortisol is immunosuppressive; it's important to maintain it in the normal range.
Interesting to know this. I have emailed his doctor to see what he says about the dexamethasone. Thank you Tall Allen
After sending info from this group to my 88 year old father's MO after his PSA began to rise and Zytiga was failing...he agreed to switch him to dexamethasone 2 months in his PSA has gone from 1.6 to .9. We are trying to squeeze as much as we can from Zytiga especially trying to delay chemo atm. Good luck.. these outstanding men have so much knowledge to share. They give me strength every day to fight on for my Dad. I question his MO at each appointment which amuses and annoys him at the same time. But Dad would be in the middle of chemo if we hadn't pushed hard for the switch. Best wishes to you.
Everyone responds differently to treatments. After zytiga I went on xtandi and it worked for me for 3 1\2 years.
Has he been on casodex yet? That's also an option.
Thanks Magnus for the reply. Yes he was on casodex but only for the first month. They took him off that to switch him to Zytiga.
So maybe he can go back on casodex.
I have just started xtandi ( 2 weeks ago ) with an EZH2 inhibitor ( prostar trial).
Hello all - just want to say what a blessing all of you have been on this journey with our Dad, 84 years old. I can not begin to thank you all enough for all your tremendous information, insight, and most importantly, empathy. We are in the same boat as you j5000. Dad switched from Xtandi after 2-1/2 years of success to Zytiga + prednisone 3 months ago. The 1st month leveled the PSA rise (39 to 41) but then doubled after 2 more months (91). Because of all of HU information I also annoy my Dad's MOs with questions and am prepared to do that again tomorrow (remotely) during his appointment. If his PSA is increased again I am going to push for a consideration of the dexamethasone. I agree with your style RayNoel about questioning every doctor whether they're annoyed or not - I think everyone on this site does that which empowers me to get the answers my Dad needs. THANK YOU!
I started taking Xtandi after Zytiga and while I was on Provenge. Xtandi worked for a little over 3 1/2 years and I am still taking it about 9 months later.
I assume you mean that Zytiga worked for 3 1/2 years. Well done!
The Zytiga did not work for me, it was Xtandi that worked for me.
Good Morning, Please understand I know very little of your fathers history but that being said I hope he is active. Do not fear the side effects, this is easier said than done but once you get to be a soldier in this fight you learn to move forward with activity and a good attitude. Because of Clinical Trials the companies have to list every symptom that happens to the participant . Let's face it , there are a lot of complainers out there in the world not just us...I have been on Xtandi + Lupron for 14 months ...my PSA never went below 1.5 and began rising and then bouncing, then it doubled...However, last check up took another dip and PET is clear.....I feel good all of the time..up early and go all day...I with the help of my doctors was able to convince the FAA to let me maintain my commercial pilots license while Xtandi was a no fly drug . I Peloton, lift, paddle board, push a mower with no motor, jog and drink cold beer...eat lean meats and lots of good stuff.....I am 67 , 12 cores Gleason 9 2015 , Proton radiation 2017 , and about to head to the airport......Great advances are on the horizon how do I know? at 47,000 feet I can see them.......Support Dad but do not worry over him....we love humor and activity...you are a loving child, take up activity with him and laugh.... Blue Skies Sky, King and Penny (woof)
Loved reading your reply. Also on xtandi and is working great . Work out and work in yard and around house daily . Currently working with workers and doubling size of our boathouse of which each day end with a cold beer . Keep flying my friend .
Thank you Pilot52. I love this reply so much. Espeially the fact that your PET is clear and there was a PSA dip. He is quite sad right now and not moving much. I'm trying to encourage him (from across the country) as much as I can. And your reply has inspired me to make him move even more. Thank you very much.
Prayers and strength sent to all who are reading this who are making tough decisions & praying daily for positive results in the battle with PCA.
I was diagnosed in October 2018 and my PSA count was 1,134. The urologist put me on Casodex but the oncologist immediately switched me to Xtandi (Enzalutamide). My second blood draw saw PSA at 0.2 and it has bee <0.1 ever since. There are some bothersome side effects (hot flashes, bowel leakage) but I can handle those. There has been no discussion with the oncologist about what will be done if the Xtandi ceases to work
I do not want to discourage anyone from continuing to battle for as long as one can. That said, I think it very important that we also plan for the end of treatments, live what time we have with some quality of life still remaining. To bombard ourselves with increased amounts of drugs, side effects and pain etc. wherein one's life is one constant war to stay alive, at some point, makes little or no sense.
I also think that caregiver's need to recognize this and do not keep pushing their loved one into more hell just to keep them alive. That is why I believe very strongly, that anyone of us facing their demise due to pc prepare in detail how they wish to end, when enough is enough and ensure that their wishes/plan is well circulated so that they do not end up being a pin cushion and source of income for the drug barons, because in reality, when quality of life has ended, all we become is moneymakers for the drug companies.
Sounds discouraging, but please think about this and for all of you not yet on the final treadmill, get your affairs in order, chart out a plan and then live life LARGE, given the constraints placed upon you.
I'm not getting on any treadmill. Final or not.
Monte:
I do not blame you, as at some point, enough is enough.
I can advise that unless can really get into major physio, it is impossible to stop the decline in physical health, that is the nature of bombing one's body with chemicals that are designed to kill.
Do what you can a walk or several short ones, or whatever all helps a little to keep the blood flowing.
Advanced PC is a monster, let nobody get the impression that this fight is a walk in the park-a pun, but is akin to going to the front in ww1 as a private in the army!!!!!
Hey j5000! I'm so sorry your dad is in this position. I'm glad he's got an involved son to look out for his interests. I, like your family, may also have to make that tough decision to delay chemo until after this CoVid-19 threat dissipates. Diagnosed in 2015 with Gleason 5+4=9 (12 of 12 cores) prostate cancer proven metastasized throughout my spine, pelvis, and femurs by use of bone biopsy, I was told that they would use every drug in the NCCN approved guidelines until it was time for, what was then the last ditch med, chemotherapy for 18 months and the last 6 months in hospice. When I asked my physician's assistant if that was still the plan, she assured me I was correct. When queried, she replied that Xtandi was such a similar drug that it was useless to try when one had failed on Zytiga since one would immediately fail Xtandi. I will ask this of my Medical Oncologist when I, hopefully see him at my scheduled appointment in mid-April for bloodwork, CT & bone scan. When I was put on Zytiga I was told that it typically works for 8 to 18 months before failure. I'm thrilled to hear that some men like Magnus1964 has got 3.5 years out of treatment! I take two 200mg Advil with Norco 325mg every four hours to try to manage my pain and wonder what damage the Advil's doing to my kidneys. I also wonder if I caught my Medicine Related OsteoNecrosis of the Jaw early enough that the only horrible result was having a 2" wide section of my lingual mandible fall out of my disappearing gums leaving the roots of two molars just hanging there inside my mouth. Overall I have a great attitude about this minimized life we're living, but there's a part of me that's growing tired of carrying my own ecosystem everywhere I go and bursting into a tsunami every 90 minutes. The looming reality of chemo and what that may mean for me has me living for treatment instead of treating to live. A part of me would love to just choose to be that "Emotionless flowchart" that gregg57 referred to, but I can't stop wondering about the recent developments revealing the preponderance of us High Risk guys getting NEPC, and even worse chemo needing to be used. There's so much to be said for choosing quality of life over quantity, that I asked my Physician's assistant about refusing chemo. She said that she'd hate for me to make that decision and then have regrets, bringing me right back around to this recurring loop in my logic. Nalakrats, pilot52, Tall_Allen, cythgob, and j o h n want to weigh in on this and share your mental state and any advice?
8 cycles chemo and then 31 months Xtandi. Highest psa 59.9 Now 0.1 for quite a while. About 7 psa at last chemo. Extensive bone mets. Abdominal mets. Like many, I take the Xtandi in the evening. It can cause fatigue and drowsiness. I can't remember the endings of a lot of movies. Xgeva changed from once a month to every three months "so your teeth won't fall out". My oncologist can be funny when she doesn't mean to be. She forgot to mention there is a jaw attached to those teeth. Lupron is lupron. Hope all goes well.
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