Question for all you warriors. Have you had Zytiga fail? Yesterday I met with my MO and he reviewed the results of my PSA - now 15 - up from 4 - ninety days ago when I started Zytiga, the bone scan - some mets larger and some new ones - and CT scan with no mets in the soft tissues. He said we need to move to the next level. Since I have only bone mets, he recommended Radium 223 or chemo - 6 to 10 sessions.
I am very interested if any of you have faced this cross road and what you decided and how it worked?
I see this study used docetaxel (Taxotere) - a taxoid. There is a similar European study with another taxoid - paclitaxel (See: pubmed.ncbi.nlm.nih.gov/305... . However, as I await the inevitable failure of Zytiga myself, and TCE's question stands for me, especially since I had Taxotere treatment at my diagnosis in September 2016 at 49 (4+5, numerous bone mets without soft tissue involvement, palliative radiotherapy to 2 spinal mets).
I officially went mCRPC in January 2019 and was put on Zytiga. Zytiga failure was indicated by a significant PSA rise during the summer of 2020. A September PET revealed no radiographic progression, and since October 2020 I have been in that fortunate population of ~56% of men who saw a halt in PSA progression while on Zytiga by switching from prednisone to dexamethasone. But as I expect my dex-induced honeymoon phase with abiraterone to end, I want to plan.
Indications of radiographic progression will be critical, of course, and in this instance I would opt for Ra-223. But what if there is no radiographic progression (I can hope)... I presume a platinum-based chemo like carboplatin would be next...likely followed by a tour on Xtandi...?
Yes - I did Taxotere out of the gate given my tumor load and age at time of diagnosis (49). I was also getting irradiated during the first 3 weeks of the 6 month Taxotere regimen. I can give you a description based on our common bond of typical ADT side effects - the chemo was not overwhelming because it was in the same spectrum, if you get my drift: Exhaustion, chemobrain fog, bloating because of the steroid dripped in at infusion, some nausea but not incapacitating...etc. The one thing I would say is to prepare for your infusion days - keep hydrated, don't eat too much prior, something bland and digestable after... and have something to look forward to the day after... it was ice cream for me! Good luck, TCE!
6 sessions, after number 2, lost my hair then soon afterwards my mouth cheeks felt sore. Taste buds stopped working, so changed diet to veggies and fruit.
To be honest, the worst part was anticipating becoming a zombie and puking all over the place - It never happened.
Actually Lupron and Abiraterone was working for me, PSA < 0.02, but asked my Oncologist for Docetaxel, he liked my fighting spirit and ordered it!
Is Docetaxel the IV chemo? I see people mention it a lot.
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It worked incredibly well for me. I rode the positive treatment effects for nearly five years before I went to Provenge followed by Zytiga. The side effects are very over rated. I had very slight side effects, went on with my normal routine.
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Thanks are you describing the chemo or the radium 223
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Sorry, chemo.
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That is so good to hear about the side effects. I exercise a lot - run, lift weights , golf. Did you feel like exercising. Did you change your diet at all during the procedures? Did you lose your hair - did it come back??? 5 years is great - did you stay on lupron???
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While I was going through chemo I continued to run (5 miles four times a week) and lift weights along with my daily work on the 10 acres I live on. I was 64. Yes I lost my hair and yes it grew back. I'm still on lupron, have been from the start. As far as food I pretty much went vegan during my chemo treatment. I now eat wild caught Icelandic Cod once a week, 4 ounce serving. Just do the chemo and get it out of the way. Do it while you can.
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What great input!!!! In the 3 week cycle - were there variations on how you felt????? I am 73 but still very vigorous. Had this crap for 18 years and have continued to get off the couch and exercise.Thanks, so appreciate your input.
I have not had chemo myself. My impression from other men is that some get huge benefit from it and others get very little. Some find it easily tolerable and others think it was horrible. I'm not aware of any tests that can be given that tell you in advance where you might fall on the two spectrums.
One thing that I have concluded about it is that many of the nasty side effects can be mitigated by a compassionate oncologist who cares about side effects and pays attention to them. Some things that are often used include:
1. Altering dosages. Some docs argue (and I think there are clinical trials supporting them) that cutting the dosage in half or thirds and doubling or tripling the frequency of infusions to keep the total dosage the same, can make a big difference in side effects.
2. Ice can be used on parts of the body during infusions like hands, feet, and mouth that are generally unaffected by cancer but can produce nasty side effects. The ice slows the blood flow and hence the dosage to those parts.
3. Neulasta can be used to prevent neutropenia (weakening of the immune system by the chemo).
I suggest talking to your oncologist about all of these. If a doc pooh-poohs the side effects, maybe a more sympathetic doctor can be found.
Side effects, let's see. Shed the skin on my entire body (right down to having no finger prints), loss of balance, fatigue, weakness, numbness of face, feet, butt and hands. (no feeding myself, wiping my rear, washing my body, getting up out of a chair without help.) Bleared eye sight, cold all the time, needing 2 hands to lift a glass to my mouth and then water leaking out the sides, inability to wiggle a toe.. Just generally life was not worth living... My wife and I talked it over and decided 3 years or less of life would be better than 10 years as a complete invalid. Cut dosage to 120 mg first with improvement. Made further cuts to 80 mg which I am still on... All the above without consulting MO. PSA at time of all the cuts--0.14 from 53 at time of RP and 64 at 6 wk checkup.. Continued to drop to undetectable 2 yrs later.. Now fluctuates 0.08 to 0.13. Long winded, but if you can't stand full dose feel free to cut dose and survive both treatment and aPca. Added xtandi after PSA rose after 4th cycle of 9 cycles of chemo I suffered through..
I was at the extreme end of curve for side effects.. most have WAY LESS side effects than I did.. see many posts here of guys who tolerate the high dose for long periods with few detrimental results. I had almost all of the bad SEs except for death.
And thank God the latter didn't happen. Born and raised in Kalispell Montana but now live in Arizona. Best of luck to you shooter I sure appreciate your input.
I had average Psa suppression with Cosadex and then Zytiga added to ADT.A series of PsMa scans showed the increase of number and size of mets in lymph nodes and bones. I tied chemo which failed after 4 doses, so I did 6 doses of Lu177, which killed all soft tissue mets and a lot of bone mets, but some new bone mets appeared with low PsMa expression, so now I have been allowed to access Ra223 but because we already know chemo may not work again, I am not having it again, and added to Ra223. There will be a limit to how much Ra223 I can take, and I may have end stage chemo with Cabazataxel after Ra223, and I suspect palliative care after that if nothing new being trialled has been converted to available therapy.
I begin Ra223 on 26 Feb, or in about 2 weeks in Sydney from Theranostics Australia.
I live near in Canberra, so getting it in a world full of Covid virus looks possible, because there is not much C19 virus in Australia compared to rest of world.
Zytiga worked for a few months for me. I’m on chemo now and got scan results yesterday. After 8 chemo treatments my PSA went from in 30’s to 5. Alk Phos has gotten down from in hundreds to 60. Scan show some healing and bone density scans a good amount of improvements. I’m also on Xgeva. Biggest side effects have been lost hair, fatigue (gets better about a week after chemo session), acid reflux and numbness in toes. Ice has helped on last one if applied during chemo.
One question have you had any genetic testing to see if you have any mutations that could open you up to other treatments like Parb Inhibitors in the future?
I would suggest you consider and discuss adding Provenge now. Whether with chemo or with Xofigo or both. It takes advantage of antigens from the dying PC cells for enhanced immune response against remaining cancer. Earlier is better with Provenge.
I have given thought to Provenge but it does not appear to be available in Australia where I live, and I have probably already weakened my immune system is extremely expensive and has only 4 month mean extension to life time. I've had one email from a man who had Provenge 9 years before he emailed me, so he did real well because his white cells were modified, and when injected back into body they went to work very well against his Pca, and succeeding generations of white cells retained their ability to see his Pca as rogue cells for many years, not just for 4 months. Not everyone gets a good response from Provenge.The research goes on around the world for immune therapy that works as well as or better than Provenge, and I recall some years ago Marsden Hospital in London were right into it, and trouble was that although a few men in trials got remission, most did not, and only 15% got any benefit at all in terms of lifetime extension. Many had horrendous side effects where their immune system went berserk and attacked healthy cells, and I just have not heard of any easily available immuno therapy based on what Marsden has discovered or improvised.
BTW, I had big genetic examination of my blood last November and NOTHING was found to indicate there was a reason I was prone to Pca or any other disease. I was not Brca1+2 positive, so PARP inhibitors would not work for me. But one sister died of Oa in 2005, and my other sister is still alive 10 years after having double mastectomy that allowed her to live. My dad died from melanoma, and his mother from Oa or some other female cancer. My mum died of old age at 98 in 2015, and never had any serious cancer, and her mum also didn't, but she had 6 brothers, and I don't know what took all those guys out, could have been Pca.
I really have no idea if Ra223 will work for me to grant me a long extension to my life time.
But it seems like a good idea at this time because docs are telling me I only have Pca in my bones. But I can see that it would be possible for my Pca in bones to spread back into visceral tissues. If Pca in lymph nodes was destroyed by the 6 doses of Lu177 from 2018 to 2020,
what is the condition of those lymph glands now? Maybe not so good, so an invasion by a mutated form of Pca may not be held back, and not easily treated by anything.
But it that happens, I may have to try Cabazataxel, if I am medically strong enough to take chemo after Ra223.
Meanwhile, today is such a truly beautiful St Valentine's Day.
Happy Valentine's day to everyone here !!! Its not my place to send everyone a bunch of roses, but if you share the value of love with another, get down to the flower shop.
I sent a bunch of roses to My Bicycle. And you know why? Because its so happy that I ride it so often
My last week's total distance was 228km, which was 10 hours cycling time, in 3 rides.
Now to get back to creating web page content. Maybe have a swim later, and visit a friend with a six pack of German beer he likes, because he mowed all my lawns yesterday.
He has the most beautiful garden and works to keep it looking good, and can't contain his spare energy. I'm not into gardening, and I think its because I have no nice lady to please by surrounding her with a beautiful place to live. And I may not be around too much longer.
Best of luck to you as well Patrick. I really hope the Ra223 keeps you riding for years to come. No roses for my bike its not happy at all. We got 7 inches of snow so maybe roses for my snow shovel because it digs me 🙂🥶
happy Valentine’s Day to you and your bike Patrick. I think you should go for the Provenge and put it on your side. Real world evidence shows much more than just 4 months. And it plays well with Ra223.
I have had had chemo, which probably has permanently reduced my white cell count.I read those 2 links you sent, and maybe I'd get a longer reprieve than 4 months with Provenge but I'd have travel to USA to get it, and it was usd $150,000 last time I saw a price, and travel is risky now in these times of C19 virus while I have lowish immune system. I might be able to have Provenge afterRa223. But Ra22 does affect marrow function so I really don't know if going to USA after Ra223 would be good idea.
I'll do a search to see if Provenge is available in Australia where I live, I have not seen any post saying anyone got it here.
It might be nice to fly white cells to US, then fly them back for-injection. Just have to keep them cooled for the trip. That'd be real cool eh?
But its not available here in Australia, because its not approved here, but then the news article is nearly 5 years ago, and if any drug really was very successful as claimed 5 years we would have all heard about it. I don't know if it works for Pca, but original article said it worked for a man about 40 with melanoma, but not for his wife with melanoma.
But is Venetoclax available to men with Pca who had chemo fail like me? Lu177 is also not approved, but I could get it because chemo had failed. The rules allow such things to happen.
So there are things seem to be a fix, but really don't offer much benefit.
The results of a trial of Lu177 vs Cabazataxel resulted in 66% Pca patients getting big Psa reduction with Lu177, and only 37% with the darn chemo.
Trial for Venetoclax with enzalutamide in MCRPC who failed AAR drug. It is pretty well established for lymphoma treatments in the US.ascopubs.org/doi/abs/10.120...
We all would have heard about it if Venetoclax worked for Pca. I've heard nothing positive for it against Pca.Another nice cycle this am, only 67km, and 3 times a week it is enough to maintain my fitness.
I gave up heavy duty road biking when I got burned out on racing with year round training. Couldn’t just enjoy a ride anymore. And my wife was a “Bike widow” with me so many hours training and coming home exhausted. Now I enjoy training for long distance “through-hiking, weeks of backpacking in beautiful mountain wilderness, which I do with my wife. Still do an hour on my trainer 3x/ week I’m winter and recreational (slowish) rides in summer. Not a shadow of competitiveness for me.
I just ride around my town like a cyclist version of the Ancient Mariner. If young men overtake me, its what I expect, but for last 5 years I cannot recall anyone over 60 overtaking me. I sometimes have men 50yo on E-bike who overtake me up a hill, and get far ahead. But on the down hill I go fast and overtake them and get so far ahead that on the next up hill they can't catch me, so I stay ahead, bye-bye. I've been tempted to race in the local cycle club but I just don't need to. I been there, done that.
I have a bad ankle that does not let me do any long hikes.
I was a spectacular failure with the ladies, and although none complained about me being a bad lover, BF, or husband, I could not keep any of them "on the porch" so
that's why I bought a bunch of roses last Valentine's day for my bicycle, because it wants me to ride it for hours and hours on 3 days each week. Its a quite nice enough place here with hills and valleys and lakes and not too many ppl, and nice roads and sealed bike paths.
Sounds great. What are you on now? Sorry - I am just getting started with this - Is a bag one 1.5 hour session???? Why did you take some taxotere, then Jevtana and then carboplatin???Thanks
Tom, currently Lupron/Xtandi for 4 years. PSA undetectable.
Jevtana is first line chemo and the only one insurance would pay for at the time. Did 6 then failed 9 months later, then another 6 then failed again a year later, then another 6 and 3 more. They told the they were going to drop a nuclear bomb on a dandilion.
As far as Im concerned, Jevtana should be first line treatment and is better than taxo. But the insurance makes us do it in steps.
Hi Tom, yes one bag per session, probably 21 days apart.
I would advise soaking your finger tips in ice during the session. It helps with neuropothy and keeps your fingernails from getting all jacked up.
As far as how I felt during, its like a rollercoaster 3 hours. First they gave me a small bag Benydryl as part of the anti nausea protocol, so I got sleepy. Then they gave me steroids so I was wide awake again lol. This was all part of the anti nausea. Years ago, before this protocol, you would have lost your breakfast.
Afterwords they gave me more oral steriods to take for 3 days so I was flying high but not sleeping, so ask for a sleep aid if possible. I felt decent for those 3 days then the anti nausea wore off and I started feeling like crap days 4-8.
If your hair is going to fall out it will happen around days 18-20 but it doesnt always happen, but mine did about 75%.
Days 8-21 were not that bad. I did this and continued to work for 4 years until I finally stopped.
If I think of anything else I will let you know. Please ask any questions brother. My prayers are with you.
If they do the protocol Im thinking they will it takes 2-3 hours. They will start your first round slow to see how your body, kidneys especially, handle it. You do not want them to push that stuff in quickly.
Bring a book, and raid the snack shelf. Also, find out how many rounds you will get, you could consider a port. Unless IV's don't bother you at all, they like to use the back of the hand. But seriously, none of it is a bad as its made out to be. It has a bad stigma but Taxotere is one of the more moderate chemo's compared to most. You will breeze right thru this.
if you don't mind I'll probably ask you some more dumb questions. I so appreciate how you and a number of other warriors have told me their thoughts believe me it's better knowing what you might face than to have a total surprise.
Tues., Wed and Thursday GREAT - Friday CRASH- felt like all joints ached, needles in my skin, could not sleep at all - 2 nights - went to Mayo urgent care in Bldg 3 yesterday - they gave me hydrocod/acetam for pain and sleep - only took 1/2 pill - Slept GREAT last night - still feel kind of crappy but much better - how long does the crash last???
Im sorry you crashed so hard. This stuff affects everyone differently. Whatt I remember was days 1-3 were decent because I was wired on anti nausea meds and steroids. Starting day 4 and thru maybe day 7 the meds wore off and I felt much worse. Days 7 thru 20 was a gradual improvement, then they hit me again on day 21, and it stars over again.
Pretty sure I did a sleep aid for days 3-10 because of the steroids, maybe something to consider.
Did you soak your fingertips in ice chips?
Remember you may lose some or all of your hair on days 18-21. I actually was ok with this. For most guys hair is a no biggy, unlike woman. Plus those damn nosehairs are gone and no more eyelashes in your eyes lol.
But lets keep in perspective, this is probably the best thing you can be doing right now to keep the monster at bay, so this is a huge positive in spite of the side affects.
Are you continuing to work? I worked for a while and had people at place of employment shaving their heads in support if me.
I work from home in my little recruiting business. I know Docetaxel is the best for me right now. BUT IT SUCKS. Today is day six. Hopefully better tomorrow.
JohnnySo appreciative for you feedback. Had my first Docetaxel infusion yesterday at Mayo PHX. Scared out of my mind but went GREAT. Feel great walking and hitting golf balls today. Waiting for crash. I did fast down to 700 calories.
Zytiga/Prednisone failed me after 6 months. Had genetic testing, and was found to be BRCA2+. As a result I was then put on Olaparib PARP. Very effective for me for up to 2 years.
I was on Zytiga for just over a year and it worked well , my psa went from 78 to the low 3s , then it stopped working , I have just completed my 8th docetaxel infusion as was recommended by my oncologist , my psa spiked up to just over 6 intially but now is back down to 3.48 with only a few side effects .......
After diagnosis of stage 4 prostrate cancer with metastasis to bone, I took Zytiga with prednisone and Lupron shots. After 6 months PSA was rising. I then took Xtandi with prednisone and the Lupron shots for 6 more months. PSA was still rising. Had a pause in further treatment for 2 months due to Carotid surgery and broken vertebrae at T4 in my back. Had some spot radiation while in the hospital with my back. After 8 weeks started Taxotere, and received 3 treatments and PSA still rising. Was receiving Neulasta and Xgiva shots with the chemo. I then started Ra223 injections. I received 4 injections and my platelets dropped to 43,000 and my HgB and WBC count was very low. Holding off on 5th injection. Scheduled next week for CT and bone scan to see if have had any progression. Then more blood work to see if blood work has improved. Hopefully can get 5th and 6th Ra223 injections. If my overall stamina and blood work allow, they are talking maybe Jevtana. Still getting Lupron shots every 3 months.
I had Zytiga fail on me, for after 2 years on Xtandi (fail) I switched to no effect. I’ve had Radium 223 (Xofigo), but my PSA rose to an alarming rate (500). I am now on Double chemo, Docetaxel and Carboplatin, hoping to stem the tide. they kept telling me not to worry about Psa, but how is that possible because it is a marker that I have been watching for 5 years. Go for the chemo, my friend
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