My husband started Zytiga on June 26 his PSA was 3. It was checked on July 17 and it’s up to 9. What does this mean?
Not responding to Zytiga: My husband... - Advanced Prostate...
Not responding to Zytiga
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Blair77
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•
They should check his bone scan if he has bone mets before moving on. He can try Xtandi next, although there is a large amount of cross-resistance. I don't know what he's already tried, but there are many clinical trials for promising new medicines.
• in reply toTall_Allen
Can they try Xtandi tho ? , because the information given by prostate cancer uk reads
“If you’ve already had a type of hormone therapy called enzalutamide, abiraterone probably won’t be an option. And if you’ve already had abiraterone, enzalutamide probably won’t be an option. This is because research suggests that men who have already had one of these drugs don’t respond so well to the other drug. However, if you get severe side effects from abiraterone or enzalutamide, you may be able to try the other drug.”
Tall_Allen• in reply to
The UK has more rigid laws about drugs. In the US, you can try the other, although, as I said, there is known cross resistance. Still, getting a few more months may be worthwhile.
This is the same in Canada. My husband was on Zytiga for 10 weeks and his PSA rose from 33-688. He was told Xtandi was not an option, because they are very similar drugs, and stats show a person resistant to a drug like Zytiga would not benefit from Xtandi. He's now on cabazitaxel another IV chemo treatment. His PSA went down from 1098-124 after just one treatment.
Sometimes after taxane treatment, the cancer gets resensitized to Xtandi or Zytiga. It's worth a try.
Good to know thank you. He'll stay on cabazitaxel until it stops working.
That is a fantastic response to cabitaxel!!
I got over 2 years adding xtandi , after zytiga failed at 12 months. I will try one or the other if not both , when I cant handle anymore chemo.
• in reply toTall_Allen
Yes everything is worth a go if your able to, it’s a shame that medical laws are not the same everywhere.
Chask• in reply to
Unfortunately Australia is the same as UK. If you have had Abiraterone, then no Xtandi for you! And vice versa.
If the cancer were PSMA positive, you could explore the possibility of trying Lu 177 PSMA. There are clinical trials :
clinicaltrials.gov/ct2/resu...
and there is the possibility of getting treated in Germany or Australia.
It took 4 months for zytiga to work for my husband. His PSA was up 40% first month (not 300% like your husband). Zytiga finally started working at 4 months when he took the zytiga with food. He's been taking it for 7 months and PSA is still going down a little each month. Don't quit too early!
MelaniePaul• in reply to
My husband's PSA went down from 150 to 50 within only one month. We were told to never take Zytiga with food since that increases its side-effects.
Moose2012• in reply to
Thank you for sharing. We just got my husbands latest PSA and after not quite 3 months of taking Zytiga his PSA is going up. He was on Xtandi for 9 months and was switched to the Zytiga. We are both a little worried but your message helps.
Similar to mtnwife, my dad's PSA went up the first month, then up and down over the next few months. After that, it kept going down. His oncologist said that Zytiga should be taken for at least 3 months when first starting, and then evaluate after the third month.
Hi Blair77.
I think it may mean that your husband doesn't respond to Zytiga. Has he already been on Xtandi? This would be the next drug you could try, even though many men say that once they have been on Zytiga and it stopped working there is only a 20 percent chance Xtandi will. I suppose the next step for your husband would be Chemo?
Keep us posted. When do you see the oncologist next?
Mel.
He has not been on Xtandi. He has done docetaxel upfront and then casodex and lupron.
You should research the US clinical trials for Lut 177 as suggested by someone else. Since your husband has had chemo and Zytiga, assuming failure, he would probably qualify. It sounds so exciting.
I have also just started Zytiga (Abiraterone) and my Onco said to not expect anything significant for a couple of months. Am due for my first PSA test next week, so will try not to be too anxious about the result.
I had been on LucrinnADT injections between mid 2010 and mid 2016, when the Psa began to rise fast so I was able to have extra EBRT to PG pus begin casodex which lowered Psa from 6 to 0.4 minimum over 6 moths, then Psa rose again to 5 and I began Zytiga and that reduced Psa to 0.4 but after 8mths it was back up to 6 and a lotorf bone mets were found, countless little ones, and so with Psa at 8, I started Docetaxel chemo on last Tues 17 July. Some men respond to chemo well, ie, Psa nose dives to say less than 0.1 and stays low after say 6 chemo infusions over a typical 18 week period. But NOBODY can ever assume the same happens in all men, because Pca DNA has large differences between men although there are common features of the disease.
I have ZERO idea yet if my chemo is a good option. If my Psa does not reduce much after 3 chemo infusions, I am able to be referred to a doctor here in Oz for Lu177 or Radium 223.
If I just get as many chemo infusions as are allowed, it will do serious damage to immune system, ie, chemo is a vicious poisonus treatment. The Lu177 might be good for me because afaik, the bone mets are making Psa and they sow up in PsMa scans, so Lu177 will collect at bone mets and should work. Ra 223 is supposed to replace calcium in bones and where calcium is being absorbed by bones at met sites, the Ra goes in and destroys cancer cells. But the number of men getting remissions after bone mets have been found is extremely few, because there always seem to be some survivor cells after each form of treatment, and such cells are living cells like elsewhere in body so they are continually dividing to make new cells while some die, and the net number of cancer cells increases and the DNA of latest cancer cells after many generations of cells are different to what left the prostate gland years ago, and they often have mutated so much into many varieties of cancer that there is little hope any single chemo agent or any form of systemic radiation can kill the cancer cells.
Therefore the next level chemo might be considered, Carboplatin is on, the dreaded Platinum based chemo which has to be administered extremely carefully.
Here at my Canberra Public Hospital, my onco says that Doetaxel will fail after some time. He's quite blunt about it. But he says there have been some good results with the next level of chemo, ( and I am not sure if its Carboplatin ) and thse next level chemos are given to ppl with a wide variety of cancers, not just for Pca. Docetaxel has active taxane extracted from a tree some place, and is specifically effective for Pca. Maybe useless for lung cancer or bowel cancer et all.
I have a friend who had a cancer in his neck which the docs could not find, but they found a secondary met, gave him chemo and RT, and he's alive 14 years later. He narrowly excaped Pca with RP, but later his Psa rose ( like so many ), but he has 70Gy EBRT and Psa is < 0.01 and has not risen, so he ain't worried, and he's 79.
But the doctor who oversaw his neck cancer got a similar thing and he died.
Just what can be done and how effective it is for Pca is somewhat uncertain.
Here in Oz, all my public hospital based treatments have been FREE, bt I did spend $12,000 on extra RT added to PG, and this seems to have worked to stop local spread. 4 infusions of Lu177 and one of Ra 223 will cost me $50,000 plus other costs, not funded by Medicare yet. A German study suggests median extension to time alive for Lu177 patients is 14 months.
Once Pca has spread to many places, your efforts are mainly to gain time alive, because the chance of getting remission without serious sided effects seems to be very small.
The Big Medicine industry sells the benefits, and makes wild profits. But for me, a time will come when I seek palliative care, and make a will.
Patrick T.
to P-T, Thank you for the straight stuff and no bullshit.
Good Luck and Good Health.
j-o-h-n Sunday 07/22/2018 5:29 PM EDT
I'll really need some luck, but Lady Luck is one of the Big Three who control our lives more than any of us can manage - Lady Luck, Unkle Fate, and Aunty Destinee.
My PG is Puff The Magic Prostate Grenade, and all sitting down has been an act of reluctance, wondrin when its going to explode, but fact is it already has exploded in its Great Slow Motion Style, which is what it does.
I know a fellow who is alive 25 years after diagnosis, and another who got to the end of chemo only 3 years after diagnosis. ( but he still has options ). I'm somewhere in the middle, and just like we don't get to choose our mother or father, we sure don't get to choose our DNA, which appears to have a mind of its own, no matter what we do, or what the doctors do, or how we feel, or whether we try to remain positive.
I'm never sure what positive means, but it seems many ppl get upset with real possibilities of what can happen to them, but I let the worst thoughts about the future happen and then ask how I might delay the outcome, or maybe even get a remission.
I was a builder for 25 years, and later changed to electronics repair person for 20 years. I did house extensions and then I made and sold hi-fi sound gear to ppl. My own small business. Each and every day of my life was spent pleasing other ppl. It involved thinking about how shit can happen, and how to prevent it, and many ppl I met were appalled by my negativity. But I never was sued, never had arguments with customers, didn't go broke, and over all I had a peaceful life away from the impulsive optimists who never saw the storms a coming. I never was jailed, and sensible ppl liked me.
I could not keep off the streets though and continue to cycle as much as I can, but last week I didn't manage to cycle very far during The Poisoning Week, this is the one when the nurses come at me with purple gowns and splash masks and bagfuls of gloop to shoot me up.
I DO TRY to keep em all smilin, and on way out last Tuesday I said to 3 of the Dear Nurses, " What is the least said sentence you will ever hear while alive? "
They all looked blank at me. Not a clue.
So I said " Jus you lie down 'ere luvvy, it won't cost yer anyfink "
Well, they seemed to understand and smiled, and I said, "but this place is the exception " because the ladies had asked me to lie down, and it was a public hospital where nobody pays one cent for thousands of $$$ worth of treats.
I stopped short of saying " .....but no "happy ending " , and they seemed hopeful I might benefit from their noble efforts, and at least I find myself in a world which cares about me at a hospital while outside hospital life is bleak and hard.
The nurses' work is stressful, they know many won't make for long, so they like ppl with a sense of humour.
If you don't know humour, and if you don't see wonderment, it is then that you are lost, IMHO.
Today was such a cold morning here the plumbing pipe to loo froze solid so I could not flush the darn thing. Later I will try again.
I'll go for a ricycle ride soon to a cafe for lunch, then maybe do a nice little 20km ride, enough to have me feel better on return than when I left.
The God Of Cycling is happy if He sees me cycling about.
Patrick T.
Now come on mate, tell me how you really feel......☻
"Each and every day of my life was spent pleasing other ppl".
youtube.com/watch?v=rFugRFK...
Good Luck and Good Health.
j-o-h-n Monday 07/23/2018 6:02 PM EDT
Well, OK most days. I still try to please other ppl.
I know I ain't permanent.
Patrick T.
Patrick i am inspired by your paragraph on being a builder for 20 years. I was one for over 30 years before the cancer came creeping into the bones. My wife who is at the very high end of the "optimist scale" would always comment on my percieved "negative outlook" I can not tell you how many times that I tried to explain to her that it was my job to "see the storms a coming and to steer the ship clear before any of the passengers had a clue"
After reading your take on that same understanding "Each and every day of my life was spent pleasing other ppl. It involved thinking about how shit can happen, and how to prevent it, and many ppl I met were appalled by my negativity"
Boy did I live that life for a long time too. Only had 3 customers out of over 150 that challenged me to my limits but in the end they were very happy and 110% satisfied with my final product just like the other 147! They just made things extremely hard by their God given nature, which i came to understand and accept.
Thanks again for for your inspiration!
Well Grand Dude, I did 30years in building trades, and another 20 making and repairing audio hi-fi gear.
I am still making vacuum tube amps just for the hell of it.
OK, cancer is crooooooook, no doubt, but I read about a guy who said he had six Xofigo infusions, and he beat his bone cancers. They are about $10k each, OUCH. But when a man gets older, he SHOULD have accumulated a pile of dough, so if he wants to live a bit longer than those who don't like medical bills he must part with part of his pile of dough. We could all whinge about the rotten doctors charging huge amounts, but so what if you blow say $100,000 to stay alive another 5 years?
If your pile was say $800,000 then there is still $700,000 left to give to your kids if you had any. The expense is far better than a cruise around the world being both bored and trapped on a huge awful ship, fed to fatten you up. And really, how romantic is a big cruise? Its not as if its like your honeymoon where you achieved temporary pussy destruction every night.
I'd hate to buy a Lamborgini. If an old man does, he's likely to attract the most awful mercenary shiela who ever lived. And there's nothing you can do to alter the pussy pleasure level unless you find she's happy with technicalor vibrator with flashing lights and variable frequency etc, all the while just thinking oh what a pile of fake sex.
I've always kept an eye out for a shiela who likes cycling, someone who does not mind the reality that a 2 hour cycle ride is more fun than having sex for 2 hours. Despite the best cycling conditions in Oz, the number of local shielas on bikes in winter can be counted on one hand. Hundreds of fit and able blokes roaming around keepin an eye out too. I got to the point where I don't give a Pharque about a whole range of things, and junk I could buy; Just give me more life instead, I'm real easy pleased.
Patrick T.
Unfortuneately for me the "little recession" we had here starting in 2006 turned off the "light switch" of work. Caught me in a very bad way. Burned thru it all for 7 years of 0 work and had just gotten back on a serious role when cancer came knocking. I am stuck in treatments that I can get through assistance programs which have been really great. I got turned down on Xofigo from my mediocre insurance company. Looks like this LU 177 is the next Gen of that product so have just now applied to the clinical trials here in the states for that. Have a 66% chance of getting the LU-177 if accepted. At the least I may be able to at least get the PSMA scan to see if I am even a candidate to persue Europe or Aussie treatments outa pocket.
PsMa gallium scan is essential before Lu177, and here is costs aud $800 or about USD $600 although I dunno exactly what you'd pay for it there.
Lu177 goese wherever Psa is being made, and lingers there, and kills with beta rays, which only travel about 1-2 mm. Its good for soft tissue mets but not so god with Pca that has begun in bones; one guy in trial here said it took 2 infusions to get soft tissue mets off the scans, but 3 infulsions before bone mets went low. He is alive 2 years later, but I don't know his condition, and unfortunately, 95% of blokes who have lots of treatements stop posting about how they are; maybe they are just too old, frail, and typing to the world is very stressfull for many old timers.
Thus those whohave bad disease now cannot ever really know what will happen to themand what happens with most blokes is unknown, and then that may be different to what happens to any one individual.
I was told I'd handle chemo real easy, which I began 13 days ago. But I just spent 3 days in hospital with antibiotics pumped in due to a bowel infection, all because previous RT to PG as initial main treatment raised total XRay damage to medium, and when chemo was added it effects soft tissues so big extra damage to bowel.
Dose size and timing of chemo willbe changed. But the next man along may have much better tolerance.
I am aware of what the GFC and off-shoring of work done by former USA workers has done to US middle class - it seems it pushed a lot of ppl from middle class to poor class, and the greed of the banks and finance companies knew no bounderies after Dubya re-regulated the $$$ industry. I had a friend jaid off fron Agillent who made really good volt meters. Company began having them made in China for 1/10 the cost, then evertone joined in the race to bottom to cut costs by getting Chinese to to the work for $3 an hour while USA workers needed $40 an a hour to live moderately. Many of these cast off workers voted for Trump, and unfortunately once you start a trade war to make things right again it just can't work out; the cheap volt meters are still made in world, along with cheap underpants et all, and the ppl who buy meters of undies have ZERO loyalty to any other US worker because they are as desperate as the guys who lost their job. We have had the same sort of cycle here ever since the Japanese were allowed to sell cars, cameras, TV sets, radios et all here in about 1960. It outraged many old soldiers whose life had been ruined by war with Japs, but the Jap crap was cheaper and often better than what had been made here. People here happily bought Toyotas and VWs in 1960, only 15 years after the shooting and fire bombing of enemy cities ceased.
I got bad knees during alocal recession here in my state, so I quit the building trade, went from $30 per hour to $3.00 per hour to repair electronic gear. I was well into that and living in Froogalville at age 62 when the Pca came knocking at the door.
I know all about poverty, but then it wasn't complete, because I fully owned my
house and had a boarder, and had low cost of living because I had no wife I needed to spoil to keep her on the porch, no kids, no aged parents to care for, etc.
I could have reverse-mortgaged my house to get dough if I had to pay big for care, but here we have medicare, and the last 3 days including meals at hospital cost ZERO $$$, and I have every reason to believe the care was better than at any fancy smancy "private hospital" where it would have cost $3,000, and the insurance company would have only paid $2,000.
But LU177 is provided here by private clinic and no refund from Medicare yet,
so I may have to spend $40,000. One guy here had six infusions of Radium 223, Xofigo, said it zapped his bone mets fully, maybe that cost $60,000, but he must have the dough; if you have the dough in bank, you can afford it. But then after 6 x Zofigo infusions a many will invite Luekemia later........ and I never here of anyone who can say they had LU177 or Radium223 5 years ago and they are back to good health; its too early to tell yet with such new latest treats.
What pplchase is to get the health they had when cancer broke out, and to be be no worse off than they would have been with natural ageing.
But in my case, the Chemo has already pulled down white cell count and my days riding bicycles could be coming to a close. I have other sedentary pursuits to occupy myself though, so even with The Struggle going on with Pca, I will enjoy being alive. I quite enjoyed my 3 days in hospital, I enjoyed the nurses and doctors, I tolerated the food OK, and all the ppl who helped me enjoyed me being there; and it is in fact the only time i engage socially in a serious as well as humerous way with other members of the human race, all of whom are faced with their particular problems of survival. The good in ppl certainly outweighs the bad here, that is for sure, and if I died tomorrow, I hope I am gazing at a caring face of a nurse.......
I know I cannot live forever........
I'm back home to being alone now, I don't mind, I have lots to do, I hope my bowels settle down.
I did have or still have a small spot of lower jaw necrosis caused by Xgeva, denosumab, and I had 3 doses over 4 months, because doc followed protocol which advises its good to stop bone density loss AND that is prevents bone met growth. Well I read German study which said BD drugs don't stop bone mets.
And because I have been on ADT since 2010, I was very prone to side effect of lower jawbone dying. A small spot seemed to do just that, according to what a dental surgeon pro told me after scans. So I had slight ache in jaw on and off, and it eased down before chemo then back after first chemo and of course a bit of dead bone means some bone rots slowly, and is a but germy, and must be disposed of by body. Well after 3 days of antibiotics, not a trace of pain when I rub me jaw where it ached.
So, the 3 day hospital stay has maybe cleaned out a lot of slight infections which could become a problem when white cells go low due to chemo effect.
But now without antibiotics, the imperfections of my body due to previous treatments may allow repeated episodes where I get the chills and the low temperature that indicate an infection, which if not treated could be fatal.
Cancer may not kill me, it could well be side effects and "complicationss" arrising from the complex sequence of many well meant treatments.
I could easily wreck myself with chemo, and not kill the Pca, and if the chemo does not pull Psa low then all I have is to get Lu177, and may it does less damage to me than the bloomin chemo.
Patrick T.
I've been on Zytiga going on six months now and the results are great. PSA was 14.7 to undetectable in only one month time so results do vary on the drug I'm also on Eligard injection every six months which is a form of Lupron you didn't say if that were part of the treatment. I wouldn't give up on the Zytiga just yet let your MO decide your options.
I was on Xtandi for four months and am on Eligard every three months. Xtandi worked for four months then PSA increased rapidly from 2.0+ to 7.05. Continued with Eligard, suspended Xtandi and started Docetaxel 4 months ago together with Prednisone and Desosumab (Xgeva). PSA down to 6.95 (no decimal point error here). One more session of chemo then will check blood and bone scan. Very tired and fatigued, out of breath. Am 78. Life like this is a bitch!
Good Sunday Morning Blair77,
I have been in this battle for almost six years (please see bio for complete treatment history).
I got 18 months from Zytiga, then Dr. Snuffy Myers prescribed high dose ketoconazole, and next Xtandi which worked for 12 months.
Consider a Guardant360 liquid biopsy which only requires 2 tubes of blood to look for genetic defects. In one of mine, cancer had an ATM defect which allowed use of Lynparza, a PARP inhibitor, which worked for 9 months.
Best wishes. Never Give In.
Mark, Atlanta
Mark...I'm curious about your experience with Lynparza (olaparib). It was my impression that it has not been cleared by FDA for general use in PCa and only for breast cancer and ovarian cancer. At the same time, in full disclosure, I have been on the drug for the past two months through Johns Hopkins as a part of a Northwestern University Phase II, 3 arm randomized trail. Arm 1 is zytiga + prednisone, Arm 2 is olaparib, and Arm 3 is zytiga + prednisone and olaparib. I am in Arm 2 (olaparib only). I am also on 6 mos. Lupron shots which I have tolerated pretty well. Wish I could say the same for the olaparib -- bouts of nausea, everything tastes bad, and related loss of appetite. What has your experience been? How long did it take for the olaparib to start working? Look forward to hearing from you. By the way, I also have the ATM defect.
Rik
Hi Rik,
I was on Lynparza back in 2016-17 for about 9 months, and part of the time I was having proton radiation. No real side effects from Lynparza, but I have been on ADT for the entire 6 years since diagnosis. Several months after end of radiation, PSA started to rise, so stopped Lynparza. I had already used Zytiga and Xtandi.
Had chemo next, after scans and biopsies identified multiple lesions in my liver.
Lynparza was covered by Humana drug plan.
Mark, Atlanta
I started taking zytiga on February, due rising psa after 44 sessions of imrt.... it took about 2 months for zytiga to start working for me....
Has he had bone scan, cat scan, mri to determine why the psa is up? has he had prostatectomy and radiation? hard to help here without knowing how he got where he is and whether he has mets in bone or lymph. good luck and hope you have a good oncologist to help.
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