After a year on Lupron, Zytiga n Prednisone, I am almost free of side effects and have a 0.02 PSA and 16 testosterone! I know that one day both will start rising.
I decided to get a second opinion from the Moffit Cancer Center in Tampa, Florida. That Doc says that the Zytiga has already done its job and to hit it with chemo. I know that this is not the standard of care but I like the Doctors point of hitting it with something else.
Thoughts ladies and gentlemen?
I have been on Zytiga/ADT.Zometa since first diagnosed in Nov 2018 with multiple mets..PSA from 161 to 0.232 as of early Aug 2019. My oncologist had suggested to me to start Docetaxel chemo in July and I took a month to read the Stampede trail as well as getting consultation here too...I am convinced by the reports as well as many of the people that had gone thru. Just started my chemo treatment on Wed, 14 Aug...Just like you , I do have a lot of apprehension and unsure if this is good route to take. But I am convinced that you need to hit this beast with what we got as early as possible. Do read the Stampede report. Good luck and God bless
Are y’all going to stay on zytiga while doing chemo?
No. Stopped Z and then weened off the P for 2 weeks. No repercussions 👍
Doing chemo now, staying on Lupron and Zytiga...
Very interesting. How long have u been doing it? Good results?
I've been on Lupron/Zytiga for about 10 months, PSA <0.02...
Started taxotere, in addition to above, the results will not be known in short term. But, expect taxotere to kill a bunch of circulating tumor cells at this moment in time...
Curious mind want to know... did DFCI suggest this and do they have others following the same protocol? It does seem to make sense to blast the little motherfu&%$rs while they are on ropes, but seems beyond the rigid SOC of the DFCI system. And.... what seems to make sense to me sometimes is completely wrong.
I look forward to the updates. Thanks.
Thanks for your reply. Starting my Docetaxel on 10-15. I would love to hear your updates since we are both on the same train!
Will do....God be with you
How are you feeling a week after your first chemo?
When PSA and T are in perfect range...I will just closely monitor them..I see no reason rushing to chemo when current regimen is working so beautifully.... Chemo can be kept in freezer until you seen any clear rise in PSA or T
BTW, your Moffit doctor is not right if he says Zytiga has done its job....Zytiga is still doing its job in your case...There are people right here on this forum who are still on zytiga after years and PSA and T are in normal range.
Thank you for your response. The doctors advice has a little too much salesmanship in it to give me comfort. He is clearly helping Moffitt grow its bottom line.
"He is clearly helping Mofitt grow its bottom line".
Yes, indeed, he is. Also, his own bottomline 
Chemo offers no cure. All you will get is a load of nasty side-effects..You may live a little longer but your quality of life will suffer..Look at Provenge maybe..
Chemo DID NOT work for me at all. I took docetaxel---6 infusions.
Now the quacks tell me to try Cabazitaxel ---6 infusions.
My MO made a lot of money off me with docetaxel. I paid the bills myself, so I know for sure. Now, the new MO thinks he can con me with Cabazitaxel
Live and learn
Agree...being well informed and well read protects you from going bankrupt...and do not be afraid...in fact.. more knowledge leads to less fear..as we understand what really is going on.
I would like to die a few months early if it saves my family from going bankrupt...Don't people die young for their nation, for their values and beliefs. for a cause ,for loved ones...you get the point !
Absolutely, LearnAll, I could not agree with you more !!!
Cheers and all the very best !!
Would you convey the dying early part of your post to my ex-wife... Thanks
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 08/17/2019 8:27 PM DST
what I'd like to know is whether chemo can cause the cancer to mutate and grow spread the cancer more quickly and widely or making castration sensitive men into castration resistant. Is there a study about that?
Using both docetaxel and abiraterone in hormone sensititve men is being studied in Arm B of the PEACE-1 trial: clinicaltrials.gov/ct2/show.... Until that study produces results, all we have to go on is anecdotal stories, like mine.
I had docetaxel before starting abiraterone. In my personal case, where I was diagnosed with bladder cancer in addition to prostate cancer, I am beginning to see the docetaxel as a brilliant choice by my medical team. It will not only go after hormone resistant cells before they have a chance to get organized, but it in theory it should also go after any bladder cancer cells that escaped surgical removal.
Chemo was no picnic, but five months after my last infusion the symptom I complain about most is that I don't know what to do with the curly, unmanageable hair that's grown back all over my head.
Thanks for your reply. Can’t wait to see my new hair doo😬
When we're complaining about hair, everything else must be going very well!
My hair came back thin, white and baby soft. After years of full head of hair, big fat pony tail and beard down over my chest it's quite a change..I'd take your curly thick hair as a swap if I could.
I had chemo early on because of the results of STAMPEDE and CHAARTED. I think that was a good decision, but now I'm on Zytiga and that's working well. My PSA is undetectable at this point so I can't see changing course when you have a treatment that's working well and has minimal side effects.
At this stage, chemotherapy is an inferior treatment. It may be the best option when Zytiga stops working, but not until then.
Thanks for the reply. Hitting the Mets with something different seems like a good idea and this doctor feels that way too. I will post in 4 months to give the results. Best of luck to you! I follow your posts and I appreciate the help you give on this site.
Make sure you're not harboring HRR DNA defects like BRCA. When I was diagnosed and didn't know I had one, I made a decision to go with docetazel first per CHAARTED. It did work beautifully together with ADT and took care of bulk disease. But later, I read (the paper was posted here recently) that people with BRCA have better PFS and OS if start on Zytiga compared to docetaxel. It seems that BRCA cancers becomes more aggressive with taxanes. I had a rude awakening when my metastatic sites started acute reaction just 6 months (almost per paper median PFS) after the chemo in a frightening speed so I had to rush radiotherapy. Go figure.
If you happen to have BRCA and decide to go for it it's better to add carboplatin at the first line of chemo (SOC is given together with cabazitaxe, but can be used as monotherapy).
Chemo offered a survival advantage only in hormone sensitive cancer with multiple metastases. With a PSA of 0.02, you may not have any active metastasis. There are not data that I know indicating that in your situation stopping Zytiga and changing to chemo offers a survival advantage.
I think that it is outside the box but worth a try. From a layman’s point of view it seems like hitting it with something different while the Mets are down could be a good idea. I guess I will know in about 4 months. Best of luck to you n thanks for the reply!
Best of luck.
I can understand the out-of-the-box thinking. I personally think an eventual more successful approach to cancer will be to hit it with multiple modalities at once so that it has no where to go and can't adapt fast enough, instead, waiting for each modality to fail, but until we know more about how to best combine things, there is a risk in going out-of-the-box. Perhaps your oncologist could share why he believes this approach is best, what kind of results has he seen and how many years has he followed people treated with this approach? It is an anecdotal story, but there is an interesting ebook called "The Way of the Cat", it was offered for free on amazon for while so I downloaded it. It was written in 2017, by a man who battled metastatic cancer with bone and soft tissue mets in the late 1990s/early 2000s. He became castrate-resistant, and then started pummeling his cancer with "the kitchen sink". Even when his PSA was undetectable, he kept pummeling with a new chemo regimen and has been in remission for over 15 years. My husband is so sensitive to medication, I thought he would never survive what this guy did, but the approach caught my attention. This guy was way out-of-the box for back then. If I recall, he was living in Turkey. Unfortunately, he wasn't very medically minded, so it was hard to gather exactly what his treatments were. His first chemo round was taxotere, carboplatin and a synthetic estrogen called Estamustine. 2nd chemo was Estramucin, ketoconazole and a 3 chemo cobmo that was not discosed but refered to as the "Logothetis protocol". Between cycles he took strontium 89. Then after recovering somewhat from that and with 0 PSA, he went to Isreal for an undisclosed low-dose, weekly chemo with whole body hyperthermia under anesthesia. I doubt the ability of most bodies to handle what this guy did, and I know things don't always work out when going off course, but this is one example where it was successful.
Shanti1- thanks for the interesting story! I am certainly not excited about doing chemo. A year ago when i was diagnosed, I told my wife that I would never do chemo. And now I am ready to give it a try. I certainly am not going to do what the guy in your story did- or will i😂. I just want to try something else while I still have my health.
Why would you stop Zytiga while it is still working so well? Chemo only seems to add to survival when there are multiple metastases.
I have 20 plus Mets. Things are just fine on Zytiga but I still wanted a second opinion. The chemo is what the Moffit doc recommended so.... Can I go back to Zytiga at a later date?
Make sure you will be able to go back on Zytiga later before doing this. I would strongly advise a second opinion before going on chemo. I really do not understand why any doctor would take you off a treatment that is working so well and put you on a treatment that is less effective, more toxic and worse side effects.
I understand your feelings about this. I don’t know if I am making the correct decision but since I am very healthy, I want to give the chemo a try. Maybe I will be able to go back on Zytiga while I am doing chemo, like Darkenergy is doing. The Moffitt doc n I both like the chemo idea so I am making the decision about my life. Right or wrong, I am fighting the fight on my own terms.
Thanks for your comments. I know that you are a much more astute student on this subject, and I like reading your posts! Best wishes!
Why stopping Zytiga?
The Moffit doc told me to stop taking it a month ago. I don’t start chemo till 10-15. A little scary.
Is the thought that stoping zytiga will allow more cancer cells to become active that can then be killed by the chemo? I'm not sure how well chemo works on dormant cells that are responsive to zytiga.
I understand your point. A couple of responses to my post indicated that they were doing chemo and staying on Zytiga. If my doc allows it, I would probably be up for that too! Thanks for your reply. On this post response it is about 50-50 on whether I should do it. I never have been a guy who follows all the rules. Good luck to you in your fight!
Everything seems to be 50-50 on this site. 50% of us are right, and the other 50% of you are wrong. Almost every time. Enjoy.
Never going to see 0.02, I bottomed at 0.120 and am stable there. Bone mets just don't want to die, just slowed way down.
Did you start w Docetaxel?
Lupron for 8 weeks, PSA 63 tdo 6.4 then docetaxel for 9 cycles. Added xtandi when PSA went up between cycles 4 and 5. Terminated treatments when side effect became intolerable. Stayed on Xtdani until it made me an invalid. Cut dose several times, finally at 80mg which I can tolerate and am still on..
My MO is recommending Dox after IMRT + HDR-BT + Zytiga/Lupron to attack micro-metastasis and CTC's. I am going to get a CTC test before deciding. Leaning toward not doing it unless bone mets show up after ADT is finished in 12 mos.
That is where I am. My 20 plus Mets are still there after a year on Zytiga. Good luck to you!
If u do go ahead with the Docetaxel, will you stop Zytiga?
MO didn’t mention stopping Zytiga for Chemo.
Seems early for chemo. There are plenty of other options to manage it and 0.02 is nothing.
May be antidotal to some. However, ask yourself, which is better: kill the bastards while your body is strong and the tumor burden minimal with systemic treatment running through your vascular and lymphatic systems or wait until the body is weakened from widespread cancer?
GD
Gourd-
My current good health is a big part of my decision. Next Saturday my 30 year old son and 3 other friends fly from Florida to Montana where we will ride dirt bikes on logging roads for 8 days! I am adventurous and I think that riding on a mountain side gravel road and going for the chemo are both from a certain part of my brain 🤪.
I have read many of your posts over the last year and I respect your opinion! Best wishes to you!
Sounds like a great trip. Enjoy.
GD, was about to send you a message about this thread, then here you appear!
Maybe some telepathic power with us brothers!
Your message on target, as usual - like I said here elsewhere, circulating tumor cells (CTC) are flowing around, hit them with chemo! Why let the CTC flow freely , any cancer cell kill is a good day...
Zytiga hasn't done it's job. It's doing it's job. Chemo is a first or last resort.
I know that what you are saying has been proven. Zytiga has done a great job for me. My Moffit doctor and I believe that, although not proven in a clinical trial, that hitting it with the chemo could help Zytiga or another drug work longer. Time will tell. Thanks for your reply and best wishes!
Hi,
Dx October 2018, PSA 1000+ and the pelvic MRI looked like a supernova, extensive metastasis.
Since then, Lupron (3 months shot) with Zometa infusion and daily Zytiga/Prednisone. Currently, PSA <0.02 and scans shows scars but no hot spots.
Guess what? Asked to add chemo and my Dana-Farber doc agreed, I've done 2 infusions out of 6, get tired at times, taste buds are useless and lost the hair - other than that, not so bad in my case.
So, there's no current evidence that "adding" chemo to ADT, with undetectable PSA -provides any benefits. For me, the rationale of adding chemo is because of circulating tumor cells (CTC), why not go after them!
Perhaps, the chemo could disrupt the CTC from anchoring somewhere...
DarkEnergy are you still taking Zytiga or when did you stop it?
Yes, still taking Lupron and Zytiga as we added chemo to the mix...
Good to hear someone else doing what I have been thinking. Please let me know how it goes. I will follow you. Best of luck!
Taxane therapies are productive only in a select group of patients. Many men will have little to no favorable response.
With a current PSa of .02, how will you know that you responded favorably, as PSa and imaging are what you have to measure improvement. Would be impossible to discern any improvement by either if any at all, brought about by Taxotere, particularly on a risk benefit analyses.
I do not believe there is evidence that chemo just as with ADT is ever deemed curative. There is evidence of overall survival extension for some men but statistically not that great.
I would be asking my Oncologist for elaboration on what this would do for you.
I guess that it is knowing that in the majority of cases, the Zytiga will lose its effect within 2 years. Going to castration resistant is a whole new ball game. I know that this isn’t what the majority of guys would do, but Moffit Cancer Center is well respected and my new doc specializes in prostate cancer research. I want to give it a try because I am still healthy n have similar beliefs as my new doctor. Time will tell. Good luck to you!
Hi Fitzbruce1
There is an ongoing debate about early chemo on malecare. We chose the route of early chemo, round 2 is Thursday. Not an easy decision, but we have several Drs in our family and the concensus was even with lymph Mets only, early chemo was the way to go. Interestingly, we saw 6 prostate specialists prior to making this choice and only 2 suggested chemo.
The drugs available today in many cases contain the cancer for a number of years, so I understand why the chemo debate exists. And for us, after consulting with many people, chemo the path we chose.
Thanks for your reply. It sounds like you have Really done a lot of homework! Good luck with ‘round 2’!!
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