Hello I think this is good news my dad was on xtandi for 3 month brought his PSA low . 66 but it had a lot of debilitating side effect so we stopped and didn’t try anything more. Only Lupron every three months and xgeva. Well 5 months off of Xtandi his PSA still remains low which I’m happy but the doctor doesn’t seem positive about it? Can anyone answer that question. Why he’s not happy that after discontinued use of xtandi my dads PSA remains low but the doctor seemed pessimistic I understand it won’t stay low forever but why the negative attitude.
Off of xtandi and PSA is low - Advanced Prostate...
Off of xtandi and PSA is low
Written by
Olivia007
To view profiles and participate in discussions please or .
Read more about...
39 Replies
•
How are his metastases doing? Any symptoms?
They are in the same place since 2013 and all kinds of scans done yearly nothing has changed. He had radiation to those areas in March 2020 but still has pain in the areas he had the radiation. Dad said radiation didn’t help I don’t know if he’s expecting no pain at all or what?
So the doctor is probably disappointed in Xtandi for him because it didn't relieve his symptoms and the fact that "nothing has changed" while he has been taking it.
He didn’t seem to think my dad’s symptoms were existing I contacted Pfizer/Astellas and they searched their information and clinical trials and told me yes indeed they have evidence of those symptoms my dad experienced. So I don’t think my dad‘s doctor really cared about alleviating the symptoms. Before we started Xtandi his oncologist said that it wouldn’t even work for him but about three months he was trying to push chemotherapy on him but it’s been about 4 to 5 months and he’s not even on it and his PSA is low and scans unchanged so it depends who the doctor is what they want to sell you and so forth every doctor has their own agenda
You asked why he is disappointed in your father's progress. I'm suggesting that the reason is the lack of improvement in his symptoms. I think it is a big mistake to avoid chemo.
Regarding chemotherapy we were told of the side effects my dad doesn’t want and probably cannot tolerate the side effects my dad had only five days of radiation and he almost got hospitalized for it he was miserable although again doctor and nurses didn’t seem to understand why he felt this way, it’s not a one size fits all I could only imagine what chemotherapy will do to him he’s 82 years old it’s not going to get him cured ever what would be the purpose to go through months of agony for a few more months life?
If hormonal agents no longer work, and radiation and chemo cannot be tolerated, then consider signing up for palliative care.
I agree with you on that!
Olivia. .Doctor is trying to follow fixed SOC guidelines . If side effects of Xtandi are intolerable and you want to give a respite to him...you will have to monitor his biomarkers closely and frequently . PSA alone is not adequate. You need to check PSA, ALP, Hb, Albumin, LDH, CRP every 2 to 3 weeks. If all these parameters are in normal range. .its possible to wait for some time UNTIL PSA starts rising again. You can consider Bicalutamide for your Dad because it has much less side effects than Xtandi. Discuss it with the doctor.
You asked "Why the negative attitude ?" Doctors as a group are pessimistic, fearful people whose minds have changed seeing disease and death...all the time. So they follow the line to feel secure. And the fear of lawyers coming to sue them keeps doctors perpetually in a state of terror.
Thank you but I asked for the casodex doctor said no different than Zytiga or xtandi it’s older drug. I’m started to see the money trail. If PSA goes up we will go back on xtandi so far all scans show the same thing since 2013 so praise God nothing has gotten worse. My dad is 82 and lives alone. So I feel and so does dad quality of life is better than continuing all the toxin medications that won’t cure him anyway.
Absolutely true. Quality of life should be certainly a goal. Just prolonging life for a few weeks with toxic meds and miserable side effects is not a worthy goal IMO.Bicalutamide is a cheaper, older med but I have seen people on 50 mg /day of it and staying fine for years without much side effects...specially men above the age of 80. It has much less side effects...your MO is wrong if he thinks it is just like Zytiga or Xtandi.
Balancing toxicity and benefits is a delicate and wise task.
Thank u I will try asking for it again but I notice the new drugs are more expensive and then I see doctor gets a kickback I found a website u can put ur doctors name in it and it shows that they get paid for giving u certain medications very scary I see why they live in such big houses
Olivia..don't spill the beans about doctor kickbacks.. They have been corrupted by the Onco-Industrial complex and Big Pharma. When they entered med schools ,they were idealistic, humanistic and good young men and women. The system does not let them stay that way. I feel bad for Doctors.. they have to mold to survive in this business.I tell you why they live in big houses. Because if lawyers come after them to sue and rob all their life savings...they are at least left with their houses...because one house is exempt from any lawsuit payments. Nobody can take away a doctor's house and his car even if court awards a financial penalty for negligence. Now you know secret of Doctors' big houses and big cars. LOL.
What is that website Olivia007? The one to find that doctors get paid lickback from using certain meds?
I suggest u google them there is a lot of different one and I just say in front of my computer and googled things like does my doctor get paid for giving me certain drugs or does pharma pay doctors and so forth I don’t have one site it’s a bunch of them from Medicaid and Medicare and big Pharma. Sonic you have time do some google searches and you can the plug in your doctors name and so forth. Again it’s thanksgiving for me today I would search them and link them back to you but I have kids that are hungry and have to go pick up my dad. Thank u
You’re right! They’re part of cycle=pharma-FDA-MDs-Meds-Pharma and over again non-stop. And that’s how the money and protocols work...it changed to this a long time ago unfortunately
I am 73, diagnosed 2009 at 62, Gleason 9, inoperable, and ADT stopped working in 2016, Cosadex gave 6 months and Zytiga gave 8 months Psa suppression but Psa reduced initially for each potion then did keep on rising each time the potion stopped working. Then I had chemo which didn't work at all, and then I had 6 doses of Lu177 then Xtandi that made Psa go down to 0.32 and back to about 7 now after 2 years.So all these potions fail to keep Psa low and eliminate all mets. Next thing might be Ra223 because my Pca seems to be only in my bones. I can't ever be sure though.
Having a Psa that remained at 0.66 for last 7 years would be like a miracle for me.
But if PsMa or FDG scans showed increase in number and size of mets should make it easy for doc to recommend treatment. But if scans show no change to mets in scans, then you might assume that Pca is there, but cannot reproduce itself so the Pca is a benign lot of tumors.
I began Xtandi in April 2019 right after my third dose of Lu177. Doc thought it would make forth Lu177 dose work better, and a PsMa scan in August 2019 showed big reduction of all bone mets and all soft tissue mets gone. Psa continued down to 0.32 by November 2019, and all I could think was WOW.
But by July this year, Psa was up 100 times to 30, and I had two more Lu177 doses and maybe Xtandi effect had worn off, ie, it failed after 15months.
Then the PsMa scans began showing bone mets with very low "PsMa avidity" which means that having more than 6 doses of Lu177 was not going to give me a net benefit.
Side effects of Xtandi did not seem to occur for me and that may be because I cycle a regular 200km+ per week at good hard effort speed, 52 weeks a year, weather permitting.
I cycled 98km today and by lunch time with a friend the temp was 29C, and humid, and I needed to drink much water. I'd had Zytiga and tried doing the same thing and I had real problems with heart rate so I could not ride if T > 25C. So I moved my rides to begin at 7am, problem solved, plus I ate more vegies containing potassium.
We may all have different responses to whatever drugs we are advised to take. Because I have the fitness of a much younger man, its possible I get far lower side effects from all drugs used to slow down Pca or kill Pca cells.
For example, after having 6 doses of Lu177, I should have a permanently dry mouth due to Lu177 damaging saliva glands. No such problem now exists. So somehow my rigorous exercise tells my body to repair itself where some poison has been pumped in to kill Pca, with known side effects.
Your dad is 9 years older than me. I have a friend who is 80 and he had his second knee joint replaced today. He'll be so happy in 6 months. He had Pca, but Psa is now 0.02, not moving much, and he ha RP, but years later needed EBRT to PG, but never even needed ADT. So he had benefits of testosterone. So Pca is not something he worries about now.
I was very happy after having both knees done in 2017 during the time Psa < 1 when Cosadex still worked. Now the knee ops I had then reduced all my knee pains but left areas numb, and my feet didn't function as they did at 50, so my full mobility suffered, but over all the knee ops allowed hedge clipping, mowing, short walks, ( but no running ) and cycling. My cycling speed raised eyebrows in a group of mainly older cyclists I cycled with for awhile over winter 2017.
Then came chemo in mid 2018, and that caused hair loss and then neuropathy that maybe was a lot worse than I might have expected due to the trauma of knee replacement. But I am a lot better than 6 months ago. Not so clumsy footed, so I can't really blame the drugs for mucking me up a bit, because despite the mucking up, I have a superlative QOL when I compare my existence to about 4 billion others on our Little Blue Planet Earth.
If I led a sedentary life and was 82, maybe I'd have such bad side effects from so many meds that I'd welcome someone telling me they'll ease me toward a day when I would begin to un-live. I dunno about you, but I know I cannot live forever, and I know that the older I get, the better I was. I might happen to be able to not forget more each day than I am learning, but even that may change if I "loose my marbles", and if I become quite stupid and unable to know anyone and who or what I am, then beginning to un-live may be an imposed option for those find it impossible to properly care for me. I have witnessed friends being sent to a hospice where they have so much morphine to ease so much pain, they are nearly in a coma, and one sister of mine at 60 also had to quit the fight with Ovarian ca and she was given a button to press when pain became bad at night. She was told she could only live 10 days, unable to eat. Well, after fare welling us at 2pm, she went back to bed at her hospice and she pressed that morphine button so often she overdosed on morphine, and she died in her sleep of a heart attack, and nobody needed to be there to hold her hand.
I can say that here in Australia we allow assisted un-living to commence when all hope has gone. Its quite a lot more common than anyone might guess. It can't be discussed by any politician. Yes, there are taboos about some human matters.
People living in the practical real world are at ease with those wanting nothing else than to stop existing.
I might get 2 more years of good life if I take Ra223. But I might not, and my Pca may all flare up and become untreatable by anything. If that happened, I'd have the white flag ready. This is when QOL ceases to have any meaning. A life in unstoppable agony may seem just too hard for this here human that is me.
I'll quickly adapt, get a will finalized, then say bye bye.
I'd love to go back to being 25. Oh, the girls would really love me, and maybe I could then manage to have a successful marriage. But I dream, because if I pressed the "replay" on the time machine, girls would be saying to each other, and to their mothers, Oh, that Patrick man seems so well educated and I sure would have been, from the School Of Life, but they'd also say there's something strange about Patrick, he talks just like my grand dad. They would wonder how I had my house loan all paid off by age 25.
But the girls would not mind me being a Hot Rooster instead of being the Feather Duster that I am now, after all that ADT and radiation.
I really don't feel that piles of logic can work out emotions all the time and humor plays a part in all this life and death play where we get to be actors and with all the medicos and we might wonder what Shakespeare might have said about our numerous vexations, but we do know he brought ppl to whimpering with tears, or rolling around laughing, as ppl lived or died.
So Olivia, I cannot give the most excellent advice, but what does your dad really want?
I will try to live until I cannot.
I like my friends, and want nothing except to be eased from existing without haste when all possible hope is gone.
I do see doctors living in bigger better houses than us poor patients. We might think there are many other professional ppl get paid so much and how can they deserve it?
But inequality has existed ever since one of Adams's sons who was not mentioned in the Bible got an education at Harvard, where how to get rich was fully explained in private. But I see all that army of ppl working in my local Canberra Public Hospital, and there ain't too much greed in any of them.
They all get used to many ppl dying around them. Without this army of ppl I would have died years ago.
I always check the scholarly articles on line about side effects and possible benefits of anything any medical person recommends. I rely on my own research which was not possible in the age before the Internet became mainstream in about 2000.
So if docs talk BS at you, then use Google to check it out.
Try to take care, and love that dad of yours,
Patrick Turner.
Wow Patrick thank you for sharing your story you have been through a lot. I appreciate your response. Are you from another country? I don’t believe they LU177? Unless they do and I haven’t heard?
Thank you
I live in Canberra, a city of 440,000 in NSW in Australia.Its 300km away from where I got Lu177 at about usd $7,000 per dose.
it my be difficult to fly here for Lu177 and there would be a forced time, maybe 2 weeks in quarantine. We hardly have any C19 cases now.
Patrick Turner.
Ggpa
Like your Dad I live alone and will be 86 soon. I agree QOL is very important and therefor I have refused even tryin Lupron since surgery in 2005 and 38 days of radiation in 2008. The surgery left me incontinent with a bad feeling in my mind about Doctors in general or maybe I just had bad luck, either way, I passed on the gamble to go down the road for drugs. Yes, my psa has gone up, two months ago it was 11.5. I try to get outside and walk and get some vitamin D every day. I do take extra strength Tylenol twice a day. I have been very lucky the past 12 years as far as APC is concerned. Listen to Dad, make him comfortable and spend as much time with him as you can. Peace.
Hi Olivia - my dad has advanced PCa, and tried Xtandi. The side effects were tolerable at half dose ( 80mg) - which head given because of his age (93). Could they try that for your dad - as it may still work and have fewer side effects.
Hi my dad did try it at a lower dose and it did help but he unfortunately died in Jan from a heart attack
So sorry to read this Olivia. It’s such a tough gig, especially for our dads.
Thank u we were so occupied with treating his prostrate cancer that we weren’t as consumed with his heart which I should have been to but thank you
Wow, Been fighting since 2013. I take Xtandi at a 80 mg rate. The full 160 mg dose made me an invalid. With a break you might want to try again with half dose. That is working for several of us here. Best of luck with treatments. Happy Thanksgiving.
Yes it made my dad invalid too that’s why we stopped it. One of the symptoms there we’re a few more. But when he starts back I will suggest the 2 pills.
Thank you and I hope you are doing better.
Hi there, I'm on Xtandi, almost a year now, like you said it's different for everyone, however has your Dad tried a lower dose? Full dose is 160mg/day... 80mg/day may be just as efficacious with much less severe side effects. (Low dose prednisone may also help alleviate some of the side effects.) For the doc --> xtandihcp.com/dosing/dosing...
This might not be relevant in your dad's case: it might be difficult for an 80 year old to live alone even for a stubbornly independent man. Toss in chronic pain and you have misery. Might be part of the problem. Obviously I don't know him so ignore this isn't relevant Mike
I have to look it up and find it. I was googling and found it months ago you can put searches in like google for example do drug companies pay doctors and so forth let me search for it later today. It is thanksgiving giving today
The problem of drug companies paying Doctors to write their Branded expensive medicines became so rampant and wide spread in USA during the decade of 2000-2010 that FDA had to start a website where any gift given to a Doctor by Pharma Co. has to be declared. The problem is getting less now but it was very common in last decade for Doctors to get free Cruises, Free massages and vacations, Free Lunches and other gifts. Much less now a days.
I miss the free ball point pens.....
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/26/2020 6:15 PM EST - HTD
Olivia, you're sooooo sweet...... Your Dad is lucky he has you...........
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/26/2020 6:17 PM EST - HTD
You could also consider finding a second opinion on your dad's regime. I guess there are people here and online resources that could recommend other doctors in your area specialized in advanced PCa. Might be worth the effort to improve your Dad's QOL.
Not what you're looking for?
You may also like...
Xtandi and Increasing PSA
father has Been on Xtandi, since September 20 2017. (3.5mo) his PSA is going up and his last...
rising psa while on xtandi
psa six weeks ago 7.9, started xtandi June 10th, two weeks psa rose to 13 .3, six weeks into taking
Early fluctuations of PSA on Xtandi
Gleason 9 ....PSA 3.95 added Xtandi to Lupron it dropped to 1.54 in 14 days and at 60 day mark...
Slow increase in PSA while on xtandi
daddy had been on Xtandi since April of last year. Since about March of this year his PSA has...
Climbing psa but low testosterone
see his oncologist Monday after learning his psa had climbed from .9 to 9.9 after just 10 months on...
Fluctuating psa with xtandi
PSA level has increased since Xtandi
Off Xtandi, what next?
On Xtandi since 2/3/18 PSA holding
Weaning off of Xtandi
