Two weeks ago my dad found out that his PSA jumped from 3.5 to 10 in four weeks on Xtandi. He had only been on Xtandi for four weeks he was switched over from Zytiga. In this past week he has declined rapidly complaining of his back and legs hurting, severe restless leg syndrome, not sleeping at all, losing weight, loss of appetite, his next appointment is not until next week but it’s really scaring me to see how fast he is declining. Are these Side effects of Xtandi or could this possibly be cancer returning with a vengeance. I am so scared and I will be calling his oncologist tomorrow, I don’t think that we can wait a week at this rate. He was diagnosed in November 2017 with a 64 PSA, Gleason 10, with bone metastasis all over his body. He had an excellent response to Zytiga, Initially it went from 64 to .2 but almost immediately started rising. He only got about seven months from Zytiga. He is currently on Xtandi, Lupron, and Metformin . I am very very worried any advice or insight is appreciated.
Dad declining fast: Two weeks ago my... - Advanced Prostate...
Dad declining fast
Hi Hopeseeker, What is your father’s age and does he have any comorbidities? Has he had chemo? My husband has been on Xtandi 7 months with several problems so has cut down to two capsules. Xtandi seems harsher then Zytiga.
Mary
He’s is 76 and he was actually feeling great before he started Xtandi. His psa started rising on Zytiga so they switched him over. But what scares me is that his PSA went from 3.5 to 10 his first month on Xtandi so I’m worried this is the cancer and not side effects.
My husband will soon be right where your Dad is except so far for my husband there is no evidence of bone invasion.
Perhaps your Dad is due for a scan and could consider Xofigo for bone invasion as suggested below. Has he had recent scan like Axumin or similar?
If your Dad would agree to a Taxane chemo as suggested (which is standard of care) he might qualify for a PSMA scan which is supposedly currently the best scan. If he has PSMA present, which most men do, that could get him into a Lutetium 177 trial. Others on here are in the trials.
Your Dad has treatment options but he has to start feeling better to give him back his QOL.
I also had to cut back on Xtandi dose....It was going to kill me.
Sorry to hear that his treatments have stopped working.
Has he done any chemotherapy? Taxotere chemotherapy can be effective against prostate cancer and is well tolerated in most cases. It can also relieve pain. I was pain free for the first time while taking chemotherapy. The side effects were not bad and I will do it again if I feel it would help me.
There is also Xofigo (Radium 223). It goes directly to the bone metastases and kills the cancer there, it can also provide pain relief and kill the cancer too.
Some things to discuss with your doctor.
Hoping for the best for your dad.
Thank you for the suggestions. He has not done chemo yet. The oncologists has discussed taxotere with him and he doesn’t want to do it. He’s very scared of chemo. I pray that he will change his mind when he goes back in for another check next week.
I felt exactly the same when my Oncologist suggested it. When it was offered, I said no, but then reconsidered after doing research and from comments posted on this forum. I'm really glad I did it and would do it again.
The good thing about chemo is that you only have to commit to one cycle. The side effects were not that bad. I had some nausea, but not enough to use my anti-nausea meds. But I really started feeling much better about the whole thing when I saw the results. It was like "OK, this is worth it" Just being pain free by itself made it worthwhile.
I would encourage him to just try one cycle and see what kind of results he gets. If he can get positive results it will help a lot. It did for me. He can always quit any time he wants to. Just something to keep in mind. Hoping for the best.
Thank you so much and I’m happy it went well for you! I am going to show him this post tomorrow.
Another option with chemotherapy is to do reduced dosage at weekly intervals instead of every three weeks. The dose comes out to the same, but many people find it easier to tolerate when done that way. Something he could discuss with his doctor.
I didn’t know that could be an option. Thank you so much for the information. You have been very helpful. I wish you good health and many blessings.
Thanks.
The weekly infusion option is often used for elderly patients or patients that have other issues with chemo. Weekly infusions are generally easier to tolerate and also a smaller commitment. The drawback is you have to go more often. He might be able to start with that and then go to the three week cycles if he's doing well with it. He will be able to discuss it with his doctor. Good luck with everything.
gregg57, I must commend you on sharing your positive experience with chemo and letting others like myself that have yet to join that party feel a little less apprehensive towards it.. That’s “BigTime”. Thanks for us yet to dabble in it...
Thanks.
It's not a picnic for sure, but there was a certain amount of satisfaction knowing that if I was suffering a little, the cancer would be suffering a lot more. It also gave me a focus and helped me feel that I was doing something to fight the cancer, that helped psychologically. I actually missed that aspect after I stopped, but I was pretty tired of it by then too.
Definitely worth it, and I was very skeptical and scared at first. The first cycle is scary because you don't know what to expect. After that, it got easier for me. I'd go back for seconds too, so it must not be too bad.
Very strong! Thanks...
Nobody ( wants ) to do chemo. Some have had it with success and limited negative effects.. Do not blow a gasket with grief and worry.. easy to say . But he needs your cool head.and has it.... very lucky indeed.. remember to care for self during dads plight..
Here's the results of a small trial with Taiwanese patients comparing three week to one week Taxotere chemotherapy cycles:
sciencedirect.com/science/a...
From the article:
Compared with the triweekly regimen of the TAX 327 trial, our weekly regimen caused few cases of adverse events, such as fatigue, diarrhea, peripheral neuropathy, vomiting, and Grade 3 or 4 neutropenia. Our weekly regimen seems to be a safe treatment for fragile patients.
first i've been fighting prostrate cancer for 10 yrs. when i noticed my psa going up to 5.7 went ahead for the shot of eliguard/lupron 3/2009. the psa climbed up i had the position to have the prostrate removed or radiation. in aug went for the radiation and it stayed down till 10/2012. when the psa started to rise went back to eliguard and lupron i have a 10 yr history which i did on my self now i'm in this new program which if ones psa is about 31 use it or even if its higher called provenge look it up on the internet it tells all. its 3 sessions and then ones is down. its a 3 wk program with each wk rest a wk so 6 wks. i just
my first full wk of treatment no problems at all. i realize everyone on here are different i'm just 72 charlie here. remember i did alot of checking on internet asking tons of questions so i felt they were (oncologists were doing the right thing and i felt they had my body in mind.)
Continued benefits of treatments hopefully enabling you years to do what you love.. Good luck friend.. !
My dad was exactly the same so we came off of the treatment. He has a much better quality of life but now nothing to fight the cancer. Hope there is another treatment your father can have
I too did the chemo and it really was not that bad. A day or two each time (usually day 3-4) where it feels like a little flu. Tell him to read about it here and try it once.
Schwah
I am 71, now on Docetaxel, chemo, and psa after 3 infusions went from 12 to 30, so it looks like chemo is failing. ADT such as Lucrin, Lupron et all plus Zytiga (abiraterone) or Enzalutamide does not seem to hold back cancer for long.
It appears your dad got hardly any Pca supression from Lupron ADT. It was unlucky that his Pca was not suppressed for very long with the ADT, but often when it has already spread to bones the ADT may not work well. I got from 2010 to 2016 with Lucrin before I needed to add Cosadex, then Zytiga which gave me 13 mths before I needed to start chemo or get Lu177 or Radium223. I am considering change to Cabazitaxel now but have little faith it would work, so what I think I need is Lu177 theranostic treatment or Radium223, (Xofigo).
And all these things only give et extra time, few treatments ever give remission.
But I managed to cycle 83km these last 3 days, and I feel well, yet see the storm clouds gathering ahead.
I also get a restless right leg sometimes, and best way to calm it down is to slap my leg with both hands from each side a few times which seems to shock the nerves to calm down, and the leg settles down. There is a muscle or two which cramps and is uncomfortable, but over all I can deal with it, and I sleep OK although I must get up to pee 4 times a night, been like this for 5 years.....
Life goes on.....
Patrick Turner.
My husband has had restless leg syndrome for years before PCa. His mother did as well and took Quinine pills for it. I will suggest your slapping trick to him as he is up all night as well peeing and now slapping.
Everyone is different and things like restless limbs can be caused by complex faults in the nervous system, and such things are difficult to fix. But it seems chemo makes my left leg cramp and twitch and the gentle but firm slaps do tend to work.
I had a massage lady spend time on me last year, she was very good for after I got both knee joints replaced in Feb 2017. Part of her technique was to slap the leg muscles. Knees are now great, and no trouble, but left leg had tendency to cramp, especially after I did long 100km bike rides and while on Eligard (ADT) years ago. I am not cycling so far these days on chemo, and leg is OK while little chemo is in body for 2 weeks of the three weekly cycles.
Its a nice spring day here, and I'll be out on my bicycle soon.
Patrick Turner.
I need some of that slapping around !
Well don't ask me to slap ya around 
I ain't into providing anyone with fetish delights involving slapping, whipping, belting, feathering, hammering, etc, etc, and all my life only one kinda thing did the trick, but now, after the doctors have done this, and that, and all sorts of stuff, they have managed to convert a good rooster into a feather duster. I am seeking to marry a lady who remains well adjusted after medical bothers have eliminated all ability to have sex. Then I could marry an equal, and we could just hold hands and be nice to each other.
But its unlikely, tha gals all seem ta want more, more.........
Now ya see why I like ridin a bicycle around.
Patrick Turner.
I’ve never been in to the kinky stuff.. I once by chance got in line into a fetish ball. I followed a line of girls in lingerie..It was freaky . They were videoing a guy getting 6 inch hooks up and down his body attached to cables and they hoisted him up at the end . Then flew him above the crowd. I asked myself . If they do THIS in public ? What do they do at home? I believe in the human touch having healing powers. Even if it is as you said, just holding hands. I once had a La Kota suix healer recognized by the Catholic Church put his hands on my injured painful shoulder.. A slender medium size man . Ponytail down his back. I stood in a line of fifty or more. As I faced him he was sweating . Put his hands on my shoulder..he was generating heat.. whatever it was ? My shoulder didn’t hurt for 2yrs after that.. This is a great loss if APC prevents us from the human touch. In our condition a spiritual connection is nessasary with a partner.. You have the correct attitude good for a woman. If she wants love.. My wife is a Reiki healer and she has that heat”. I’m a lucky jackass to have her by me.. She’s on spiritual web-cites that to me seem full of single women.. One cite is “ one Love” A guy with your niceness and intellect might make connections ..
I often go a month without any conversation with anyone, except a local medic and maybe a few words to a waitress or barista. Maybe there are 3 aquaintaces, and 2 are ladies over 80, who appear sometimes at local cafe. I have about 3 male friends I see maybe every 6 weeks, and so there are basically ZERO female friends in my life and I can walk into any cafe and there's never eye contact when i look at ladies, who avoid it like the plague; they have all paused from men.....
Last time a lady touched me deeply was in 2008, then 2010, both were doctors who gave me a finger up to check size of my PG.
But once I reached 45, the number of females I ever talked to or touched rapidly went low, as their hormone levels crashed or they were just so permanently pissed off with their recent divorce. I have always believed in graceful imposition, and if there is a whiff of reluctance or anger beneath the surface of a lady, I just back off.
I am not a submissive lap dog for any lady, and have robust opinions backed up with reasons, and that's way too much for many women to cope with, plus I don't need women, I just like them, and have tied many times to love without needing, and that's another thing that upsets their expectation I would ever be a slave and spend vast amounts of dough on their vanity to keep them happy. When women's liberation arrived with the Pill in 1960s, women began to fight for many different rights, and I always insisted they have them. So when I did marry one, I insisted she remain financially independant, ie, keep all her earnings at her job, which in 1978 were half my earnings, and I never ever asked her for a cent when I bought a house for us both. But she was angry I would not allow a joint bank account. She did not need one, and she never argued why she needed the joint arrangement. I cited previous relationships where I'd come unstuck over money with a lady, and said how we'd had 3 years that were good, and no need to change anything. I paid the main share of weekly bills, and did far more hours of home work than she did, and my hobby was renovating the house. I expected ladies to practice duty of care, not flounce off, chuck tantrums, and just get on with a good marriage. But all that seems to clash with liberation, and the ladies I knew were very inconsistent with issues of relationships, and when they left me, one after the other, they were angry with themselves; they just could not proceed past the love and sex part, nor build anything with anyone, and restlessness and selfishness ruled their feet.
I always opened the door to anyone who found it impossible to be happy, the world abounds with such ppl. I've stayed at my house for 42 years now without the slightest need or desire to run about the world searching for what cannot be ever found. This makes me a non-upsettable and A-grade boring man to many ladies, and I can now ask what is the use of ladies in my life if they really don't want all the man, and they only ever wanted the cock part for awhile before they went all strange and began to hate instead of love. Life's experiences form the basis of ppl suffering PTSD from accumulation of not so good times and not so good decisions and habits. After the one I married lesft, I sure wasn't ever going to marry another unless she proved she was worth the trouble and expense, and not one lady ever practised that most terrifying of things with any man. But I began to share my house after age 29, and that was a better solution to repeated emotional pains, and sure I had some sex, but so much else was missing, but I believed it could never be found, men and women were islands, the walls of defense are built early, and human touch is nice, but its NOT needed. My mother was 55 when my dad died at 60. She never touched another man, but she did collect many friends, and I counted 80 Xmas cards ppl had sent her when she as about 80. She outlived most, and got a hug from a few, and died at 98. She proved that modern women's expectations all do not need to be fulfilled to at least get a long life.
I once went along to a group therapy session for ppl who were separated or divorced, and inevitably, part of the routine was to hug other ppl, to allow function of intimacy. I refused to be touched my the other men in the group. No way. I can only be touched if i know someone well, and I am glad to resist fake friendships. I knew I needed to touch women because the unwritten rule of life is that they need it, and a man needs to know how and when, and I think I did. But when loved turned to hate, they just don't exist any more.
I don't seem to need human touch. Like my mother, I survive without it.
BUT, I have an acupuncturist who is about my age, male, and sure, he touches me because he proved he could do good to fix bad backs and necks as a result of building trade injuries and other things that caused it. He's a kind of healer, and uses a lasert pointer to stimulate Chi points, and although he could not fix my knees of Pca, he's done a lot for me since 1993 when I met him. There's no magic, and the Chinese discovered the methods long ago.......
There are thousands if not millions of single ladies all over the planet. Their wish list does not include a man who is "Old bloke, castrated, poxed up with Pca, life expectancy > 3 years, presently independant, and good communicator."
Women's wish lists never ever include a whole pile of things because when asked "just what is it you want?" most women cannot say a word to a man who asks, but they'll spend 5 hours on a phone with a female friend about the issue.
I also used to do Hatha yoga which I found was most effective in my 30s when I was a builder and also trained and raced on a bicycle. The stretches and meditations had my body respond well - we all have inner powers for healing. But these seem to diminish with age and the chemo and the double TKR I had 20mths ago plus ADT et all has kind of wrecked the gentle effects of the yoga. But maybe I don't have the stress of work and how power athletics any more, so the need for yoga is less. I am sort of muddling along, one day at a time, a temporary human without long term goals, just letting myself to craft work alone, cycling alone to nowhere, and that's
all I can arrange for myself without being a pest to other ppl's existence.
People might tell me a thousand other ways to be, but I seem to have found a way that will do.
Patrick Turner.
Amazing description of life. I’ m interested in You. I too sprang thru relationships, meeting the good the bad and the ugly side of being a bachelor. I swore never to marry after witnesssing mom pummel my passive father in a loveless marriage . My mistake. I sealed myself off hope of meeting Mrs Right. I had pc raging inside of me for years before dx. My girlfriend of two yrs took the hand of a broken man with 50/50 odds to survive initial treatments . what I’m saying is there is a lot more to you than your maladies .Your spirit is strong. I’m 57 , the flesh is weak. More spiritual and less physical is the path .. I’ve already passed my initial expectation date .I just lucked into a fantastic human woman. What were the odds of that happening in the condition that I was in? Not good. You are, independent and a good communicator. Women like that.. I’m not telling you anything to do.. I can relate to your bon voyage amigo.Each one of us on our own pathway. I am honered that you responded to me.I think highly of you sir.. enjoy the day , and bikes away. We’re off! On our mountain bikes for a ride around our lake Vallecito . Take care ..Scott.
I had a look at Lake Velecito in Colarado, quite someplace you have there with huge mountains et all. My local lake is a mere puddle by comparison, to cycle around it and some wetlands is only about 26km.
Google Lake Burley Griffin.
I entered the work force at 19, and promised myself to never solve problems like my father whose bad temper much reduced my respect for the good things he did.
Fortunately I inherited most of my mother's attitude to handling life, firm, fair, and never violent. But I was raised in the age where children were allowed to be beaten to get them to adhere to straight and narrow; WW1 and WW2 were examples of how problems were solved. Anyway, I survived the occasional beatings at home and which followed on at Christian Brothers school, boys only.
I eventually learned to win most battles with the pen but it took longer to be any sort of orator who could win over a crowd, or even a wife, or any GF to view settling down as a desirable non-threatening lifestyle.
There is no opportunity to meet any ladies over 50 here; all seen totally preoccupied with grand kiddies and for last 20 years, I only dated one lady of 57 whose menopause had begun at 35. She had had a history of depressions and was dyslexic, and had had no kids, like me, but also had a bad temper, and it got to 2 months. She'd be tetchy on a drive anywhere and never paid her 1/2 of the cafe bill. She earned more than I did, and had a pension for her disabilities.
Allthis was before my diganosis and I was sexually like 35yo, while she was sexually 80, due to years of low hormones. I gave a good shot for 2 months, and then decided I could not afford expenses. She could not be friends, it had to be BF - GF all or nothing, but she just had no abilities to do it all. Her mother of 80 was going with guy 64, and she wanted what her mother had, and of course that's BS, you can only have whatever it is that can be had, not what someone else has. My desire crashed, and I asked to be friends only, and she was so pissed off I decided friendship was impossible. All her Mr Befores had come to same conclusion.
I later formed a much better relationship with my bicycle
If there was someone out there to meet, I'd have met her by now. I really don't care if I die alone, like so many others I have seen, even with partners, because these partners may have seen them on day before, but death comes at night, and often when pain goes high and the hospices increase the morphine in the self adminstering drip feed so ppl keep pressing button, morhine builds up, and they die of heart failure without much pain, maybe at 6am, like my sister, in a kind of foggy consiousness, alone. She had 4 chemo shots for Oa, and could not avoid death at 60. We all said our goodbyes the day before when she was able to walk around gardens with us, all chirpy, but alone at night the pain beckoned her to leave the Planet. A male friend died in similar situation in a hospice, he had multiple problems at only 72.
I recall someone who went to China to have a look around, not just in cities but in countryside where the revolution in materialism and consumerism has largely not happened for millions. He said that while gazing over farmland, he saw many old ppl working in the fields, including one guy maybe 85 on a tractor nearly the same age. And as the old tractor chugged along pulling a plough, the old guy just seemed to slump on the wheel, and he fell off. Well he'd died. What a way to go, useful right to the end, doing what he'd got to feel was necessary and what his ancestors had done for thousands of years - grow food. Far more honourable than being a finance advisor gazing at a screen all day and sitting on arse that's too fat.
I find myself in a world possesed by multi demons of modernity, so when the time comes, I won't mind leaving it behind.
Anyway, with my thoughts today away from the future, I'll try a nice little 60km ride after lunch on this fine Spring day. I also have workshop work to do.
Patrick Turner.
Burley Griffin only 21hrs and 21 minutes from here . We’re in Tucson more than half of the year -There are some nice 55 plus communities like saddlebrooke. I hear the gals out number the guys 5-1 .. Bachelors are sought after ... sorry about your sister.. so young .. so sad.. ..in the end we all will capitulate,. Hopefully not in brutal pain.. I was disabled with APC at 53.. before that a healthy life spent in persuit of love and riches.. I now have the love , the Riches gone. I also live a life with no long term
Future plans . Simply enjoy as many days as I have left here. Your beautiful homeland is one of my childhood dreams to visit. My plan had been to be ok and travel in my golden years..Unless I win the lottery those plans are dashed.The plans of mice and men. APC is what it is... I like your attitude and you do use the pen well . My pleasure to read your words Thanks Patrick !🚲
The only place women outnumber men is in aged care places, because men tend to die before women. Or in big cities where lots of office workers are.
I think my life is a bit like a pack horse, and its getting old, and the added load of carrying a lady might be a bit to much, so although I dream, I spend my days in reality land, and I know I would not fit in with a book club or knitting club, and if I asked one to come out for a ride they'd be shocked.........
Think I'll do the end bit alone, because I'm sort of so used to it, and I don't believe in miracles.
Lunch soon, then a ride, shed work not so hot so far, had a technical problem with varnish, must solve problem, and I am just the right man for that.....
Beautiful sunny day here now, was -2C at 6am, but will be 20C later......
Keep well as you can,
Patrick Turner.
Most of us are pack mules. Work until we drop. If we’re able to do so . You are in complete control of your life. I googled your place.. Looks amazing! Happy trails to you. It’s a pleasure to banter with you being on the other side of the 🌎..
At 8:30 am I had conferance with hospital registra as the speciliast oncologist is overseas util late next week.
Psa has risen from 30 to 40 in 9 days and in 2 more weeks if Psa has risen again the docs will proclaim Docetaxel to be a failure, and I have to have whole body CT scan to see full mets and compare number and size to last May's PsMa Gallium68 PET and CT scans which shows body only above the tops of femurs. Legs could also be riddled with mets.
I expect Psa to be 50 at next test in 2 weeks, and so thats a doubling time of 2 months, and so doc will now make inquriry about trail of LU177 vs Cabazitaxel, and I don't want the Cab if I am assigned to it, and only want the Lu177, might be good, but I also want Theranostics Dr Lenzo to give an opinion. Everything could so easily fail from here in future.
Last time someone Googled where lived, the google picture showed the hedge was overgrown, but maybe latest pic shows it clipped since getting a petrol powered clipper maybe 6 years go.
Anyway, I have a resonable pad to lay the head.
I'll have lunch soon, then ride bike to and from hospital for the 4th chemo shot at after 1:30pm
I am not yet fully used to seeing Psa rise so fat, so high, as if is is being hastened upwards by the chemo.
Keep well as Aunty Destinee allows,
Patrick Turner.
Well Patrick, Sorry to hear the numbers are going the wrong way but you still have a bit of chemo to finish up before moving onto the next step of your plan. You have mentioned going ahead with the Lut 177 having to spend the bucks unless you can get in on a study. But you want the real thing.
Don’t forget that the chemo sometimes resets the cancer so that Xtandi or Zytiga might work again for awhile.
Mary
Thanks Patrick -Turner.. Riding a bike to chemo.You are one tuff hombre. I’ve been <.04 ever since my first round of treatments. 42 months ago, but who’s counting? After reading others stories. I understand that if we have stage #4 and receive treatments with great results, that doesn’t confirm our future results will be good. How long? Until a change? Only our Auntie D knows. I’m avoiding her calls for as long as I can . Take care..
I covered my attitude to present Docetaxel to previous post to mjbach.
Well, my results measured by Psa are the exact opposite of what many expect with Docetaxel. I have zero idea of the future, and I know that the only certyaintly I have is that the future is uncertain, and probably a whole lot less than the 8 years my oncologist said I would get a month ago.
Aunty Destinee is, by the way, a right bitch sometimes.....
Patrick Turner.
Ain’t that the truth! Enjoy this nice season. Ride on! 🚴♂️
I rode to chemo and back yesterday, about 35km, all went OK,
and today managed 18km, enough to get heart rate up and pump the chemo around to have more effect. But I am not sure whether the chemo is feeding the cancer instead of hindering it. Psa is now 40, and rate of increase is doubling in 1 month, so in 4 months Psa could be 640, and I could indeed get real sick real fast, if nothing else works.
I have undated my page of website to show the recent Psa rise and going back to 2014.
turneraudio.com.au/Patrick-...
Great day for a cycle ride though, and some workshop work.
Patrick Turner.
I don’t think it’s feeding it. Crazy chemistry project that we are on .Sure hope for that to turn around .Your oxygen levels must be great with the rising . We walked some and will bike alittle later .. Peace Patrick!
Hey Patrick... boy you’ve been thru the ringer.. That 83 k impresses me.. keep on biking and sharing .... 4-5 times a night for almost four years.. But fours years of life after nearly losing it all on the onset. As long as some joy enters my days I’m staying on for as many chapters as possible.. fully knowing that our time her is limited and will be with suffering ... clouds ahead, lets ride for today! 🚵🏼♂️
I am so sorry to hear about your dad. I agree with you in saying that you should see the oncologist as soon as possible. Weight loss, lack of appetite and the other symptoms you describe may very well be a sign that the cancer is growing. Please keep us posted. Mel.
Hope. I have been on Xtandi for almost 2 years. The side effects really didn’t happen to me. The adt meds May be doing it, feed Dad anything he wants to eat to keep up his weight and energy. My favorite is pie and ice cream. 😀😀 I did have to go on Effexor to help with depression and anxieties. I am 68 and went thru 6 rounds of taxotere chemo. It was not bad ,the Neulasta shot the next day was rough. Just don’t let him give up. 🙏🙏🙏🙏 Fight the good Fight
pie and ice cream. 😀😀? Hot apple pie with vanilla ice cream. ZOO WEE MAMA! (Great substitute for sex).
Good Luck and Good Health.
j-o-h-n Wednesday 09/12/2018 2:02 PM EDT
Please don't wait- get an appointment as fast as you can. Cancer is nothing to wait on or make guesses. You are doing the right thing. We had a slightly similar experience. My husband did chemo (docetaxel-6 rounds) finished Aug 1st 2017. We found out late November PSA was rising and cance progressing. He started Zytiga Dec 6th. He felt aweful and just got worse over time. He seemed to be experiencing the side effects of the drugs- so we thought. Our next appointment wasn't until end of Feb- it was end of Jan 2018, I couldn't wait that long. He was declining fast. Found out Zytiga didn't help at all. His PSA soared from 34-688 with breathing problems........ He spent a total of 4.5 weeks in the hospital- we almost lost him. The cancer has not micrometastasis to the lungs- undetectable via scans. He's now on cabazitaxel.
This type of chemo(docetaxel and cabazitaxel) seem to be tolerable for most people. My husband got well enough to get out golfing again.
You're an amazing doctor, your dad is blessed to have you as his advocate. Keep fighting my dear!
If you Dad does not do well with Zytiga or xtandi he might try Casodex. It is an older ADT drug but most find they can tolerate it better. His PSA is low so there is time to try some other treatments before chemo. I hope taking him off xtandi will improve his sleep and overall well being.
My MO only does the weekly taxotere @50mg. Took me 4 weeks before I started seeing/feeling results. I am 58 with lots of bone mets but in good physical condition. I didn't start feeling any side effects untill about week 12 but continued to week 14 before taking a 4 week break then restarted on a 2 week schedule which will be decreased slowly.
Still just 50mg. My PSA dropped from 29 to 5, 16 weeks after starting, but more importantly my Alk Phos dropped from 300+ to under 50 after 6 weeks. Alk phos is my pain indicator and anything over 150 it's debilitating but at 50 it's nonexistant.
My MO wanted me to start on taxotere from the very beginning because I had numerous bone mets at time of diagnosis. I waited 1.5 years to do chemo which I believe was a mistake now as my bone mets have quadrupled+ and the pain gets debilitating much more often now.
Zytiga never worked for me. I recently had a "blood byopsy" done which showed my cancer cells to have overexpressed androgen receptors. (No surprise huh?) It also indicated that Zytiga/Xtandi would not be effective. Might be a good indicator for others out there.
I am on Xtandi for about two months...awaiting my second PSA ... hopefully my PSA will drop ... but what you are talking about are definitely side effects of the lupron Xtandi combination ... I am suffering the same sans the weight loss. Sending prayers for strength and comfort during this difficult time
I also was conflicted about chemo but decided that if it was too bad I could quit after one cycle. I found I tolerated the chemo quite well, so give it a shot - it drove my PSA way, way down. The only caveat is taxotere is a synthetic of a derivative of yew wood. I have a friend, a archery bow maker who is allergic to yew wood so watch to see whether anything your Dad experiences is a side effect or an allergic reaction. Oncologists don't know anything about allergic reactions and that can get real serious real fast. But give it a shot and do it now. We're with you and him all the way.
Dear Hopeseeker: I must admit I've never had chemo, but tell your Dad if he endured a prostate biopsy he can endure anything. Remember God is on his side (yours too).
Good Luck and Good Health.
j-o-h-n Wednesday 09/12/2018 2:08 PM EDT
Hi Hopeseeker,
Now you know why I come here. There are so many in our community that have such extensive knowledge, and have been through so much that I always find comfort.
May you find some for you and your Pop. I know my trail will lead me to where your Pop and you are now, so you are wholly welcome to any spiritual strength I can give. Just focus for a few moments on Zenbee and thank me for the strength, and it will be there.
Blessings to all of you here.
Bees
Hope seeker my husband had chemo and the side effects weren’t too bad. It’s not as scary as it sounds. Xtandi isn’t working for us either. Also do some research into lutetium 177.
I don’t have the answers. I offer you praise for your compassion and care.. We all seek hope. APC can level us with suffering and anxiety.. no one is imune... when I witnessed a total loss of control of my body I realized hat we do what we think is best but in the end , we are not in control of anything except hopefully our humanity . Sorry about papa.. I pray for the love in your heart to see him thru whatever comes. God bless!
I can’t thank everyone enough for your replies. I’m so sorry I haven’t had a chance to respond to each one personally. I have a very demanding job, a daughter, a husband that travels constantly and have been consumed with watching over my dad so I have had very little time.
My dad is everything to me and this is brutal to watch a man that has always been strong, vibrant and energetic decline. His next appt is next Friday. We have been in contact with the Dr and he seems to think these are side effects. It’s hard to believe that within a week he went from a strong healthy looking man to a weak, exhausted man that doesn’t want to eat anything and aches all over. My dad isn’t a big guy. He’s about 150lbs and if anything this dose is just too much. Has anyone had to reduce their dose? I think there’s a part of me holding onto hope that his PSA has gone down and we could just reduce dose and these are in fact just side effects.
Someone else on a similar post suggested adding prednisone with Xtandi.
My husband was recently dropped to two Xtandi capsules due to dizziness and his new MO thought that might still work.
He needs to start chemo, very soon. It isn't the "monster" that people make it out to be. 3.5 years ago, chemo for all intents and purposes saved my life. Funny thing is, I never once became sick while undergoing chemo treatment. I had my wife give me a buzz cut and I flew through it. Get that chemo going.
I had same side effects after starting Xtandi and Zytiga and ONc added Pred nisone and they diminished no problems then. On Xtandi, one year not effective and now on Erleada but few side effects. Stay positive, get exercise!
Best wishes!
RO said 6-12 months
Enzalutamide working for my dad
ENZALUTAMIDE (XTANDI) DEVASTATING
Gleason 9 (5+4) 10+ years ago - widely metastatic cancer and running out of options!
What comes after, what comes next? 
