Greetings; I have been avidly reading a lot of the posts on prostate cancer. They have provided invaluable information on the way I have made decisions with my treatment. My wife is a profesional nurse so I do have a heads up on research and the blessing of working as a team to prolong our lives together.
I had a radical prostatectomy over 6 years ago. 5 years later, on Dec 2020 I was diagnosed with metastatic prostate cancer. I had a mass on the prostatic wall and tumors and nodules that had spread in several parts of the body including bone lesions in the femur, sacrum and the left clavicle. Definitely not a good prognosis. My PSA had elevated to 575 and we had no time to waste. We initiated treatment the first week in January 2021 with double injections of Degarelix and started chemo with Docetaxel. After 30 days I was switched to Lupron which now I have received every 3 months. I have been taking 10 mg of Prednisolone every day, 5 mg in the AM and 5 mg in the PM; I had 6 cycles of docetaxel which I just finished in May. My PSA has dropped to 0.07 and my lab work has practically gone back to normal and there is no evidence of any of the metastasis' except for basically undetectable 2 micro nodules on my left lung. The PMSA Pet Scan done in May was clean, and even the bone lesions have encapsulated What a blessing indeed. But yet again there is the uncertainty as to what should be my next step. I feel good and I have been able to assimilate the secondary effects of all the treatment. The most bothersome has been the neuropathy that I currently have on my feet and hands; I am following the advice of one of the members of trying acupuncture, I have made the appointment already. Bone lesions seem encapsulated at the moment. And btw I am not hormone resistant either, hence the great response to hormonal treatment.
And now here comes my question; I see an Oncologist and a Uro-oncologist and they disagree on what is next. The oncologist recommended I start taking Zytiga/Abiterone right away and my uro-oncologist felt that I should not burn a treatment right now that I can use in case of a recurrence. Upon further discussion with my wife we decided to postpone taking the abiterone until we decide otherwise. I wanted to take a break from the chemo. Both doctors work in the same hospital, the oncologist is sort of old school and the uro-oncologist is younger and rather progressive. I reduced the prednisolone to 7.5mg daily, 5mg in the AM and 2.5mg in the PM, dealing with hot flashes as well known.
I walk, I exercise and swim practically every day; I have gained weight again and I look pretty good for 62. I am optimistic, I am resilient and I consider myself spiritually fit to continue on this journey. I currently need some insight from those that have gone through it and continue to move forward.
Based on the history I describe above what would you do? It has been 2 months since my last chemo cycle. My labs from 30 days ago show my PSA at 0.07 and I am having another set of labs done this week. Cheers !
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MoZee
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Unfortunately, there are differing schools of thought on drug mixing, sequencing and deployment in the world of prostate cancer.
Your older more experienced oncologist wants you on Zytiga right away—and, Zytiga can work very well, and for a very long time, after a successful docetaxal chemo treatment
I don’t know that science supports the “saving it for later” approach. Although, on this forum, you will certainly hear from men who’ve lived and enjoyed many good years on sequential treatment (one treatment at a time, only adding when psa is rising)
Not a clear answer, but I wish for you wisdom and guidance(and years of good health!!) on the path that you choose.
Thank you, and certainly hoping for years of good health in this journey.
I was in the exact same situation as you when I completed chemotherapy. I was still hormone sensitive with a PSA of .19 and looking at the possibility of adding Zytiga. When I was first diagnosed, early Zytiga was not approved. The only early treatment that was offered was Docetaxel. Right around my 3rd cycle, Zytiga was approved for use in the hormone sensitive space but I was already taking Docetaxel so decided to continue that.
Once I finished chemotherapy, I asked 3 different doctors if they would prescribe Zytiga for me and all said no. The main reason was that both Docetaxel and Zytiga have been approved individually for early use, but not both together. I was told I would have to wait until I was castrate resistant. I've since asked a 4th doctor who also said he wouldn't do it.
The doctor I have now did prescribe Zytiga for me once it was clear that I was becoming castrate resistant. But he urged me to wait a bit longer when my PSA started going up. He said "Try to hold off a little longer, you could be on this stuff for a long time". Turns out he was right, I'm about to pass 3 years (PSA is still undetectable).
Thank you for your response. I have another question for you. Since you have been taking Zytiga for 3 years what do you feel have been the most bothersome secondary effects of the drug and how have you weathered them so far. I think it is important to share these insights so we can prepare ourselves as we move forward with further treatment.
I did chemo and then Lupron and Zytega for 21 months. 15 month vacation and back on it again for 6 weeks. I don’t think Zytega add a lot to the side effect profile. The key is to do weight training three days a week to avoid loss of muscle and keep your energy level up. If you can’t afford a regular trainer, at least hire one for one or two sessions so you know what you’re doing. Three days a week for an hour and 20 minutes working out hard on all muscle groups will make all the difference in the world. Other than lots of sex drive and occasional stomach problems and a little less energy, I feel pretty darn good!
I haven't noticed anything significant with Zytiga in terms of side effects.
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I didn't realize it either until I recently came off...there is a difference for me...more energy for sure. I was in the no discernable difference camp a 1 month ago.
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I think it would more obvious for me too if I got off of it. The fatigue and loss of stamina is certainly there for me, but I can't tell how much is accumulative effects of ADT or Zytiga.
I have been on Abiraterone and prednisone for about 7 months. The most noticeable side effect for me has been brain fog. Definitely struggle more with focusing on what I am doing and my short-term memory, but otherwise, nothing major. Still getting hot flashes and some fatigue, but totally manageable.
There are studies that show that Abiraterone added to Lupron works for a much longer period than just Lupron when there are bone metastases. Therefore I would take Abiraterone now. When there is a recurrence in a few years, you can take Cabazitaxel.
It’s not even a close call. Phase 3 clinical studies have proven that the “save it for later strategy doesn’t work as well as the “hit it hard and early” strategy. Men live longer by using ADT/Chemo/Zytega as soon as they are diagnosed as stage 4.
Your urologist’s job is over. Anyone who thinks you should save something for later doesn’t really understand the disease or the pace at which new therapies have become available. Don’t be lulled into complacency by excellent results so far.
Thank you.,It is not clear whether adding Zytiga to ADT alone is helpful for advanced pre met patients who are still hormone sensitive. Do you know of evidence that Zytiga is helpful for pre hormone resistant guys?
What is your situation? (There is nothing in your profile) Have you had any therapies? What were they? You are taking ADT now? Is it controlling your PSA?
Im in treat. with MO at DFCI, as above. After RA Prostatectomy in 5/2018, PSA recurrent and so put on ADT for 1 ye, then one year vacation, now, back on ADT. Vacation ended when, PSA slope doubled. (Previously had IMRT in 2012, then recurrent.) thanks.
So you had primary IMRT in 2012, then you had salvage prostatectomy, then you went on intermittent ADT. So you are in a completely different situation from the OP. You are asking if starting Zytiga now can provide any benefit to you. It appears it can provide a benefit, as in this study:
PSA dropping to 0.07 is a sign that your PCa responds beautifully to treatment. There are 2 different point of views. First, use all your weapons at once....second..titrate and select your weapon and keep a close eye on behavior of PCa.Personally, I support the second point of view. You might stay alive for 10 or 20 years..so the weapons should be saved in view of potential long life. If your PCa is not responding to current treatment..then, its OK to add more weapons. This approach has been working for me..I am still on my lightest weapon..that is Bicalutamide monotherapy for last 12 months...with hardly any side effects. Daily 2 to 3 hours of physical exercise ,fully plant based diet esp cruciferous vegetables and keeping inflammation as low as possible are other interventions I use.
The longest living member on this site,,, Magnus has been using sequencial treatment and he is in his 28th year from day of metastatic diagnosis.
MoZee..Remember Zytiga is not a candy ...its an effective but toxic medicine..It causes High blood pressure, Diabetes and many serious side effects...so it should be used after a detailed analysis of whether you need it at this time or later time.
Glad to hear your doing good.. I was on Bicaludamide monotheapy (150 Mg daily) and it did well for me for 6 1/2 years before PSA started rising.. So stick with it. Only SE i noticed was I developed man boobs, but they didn't really bother me.. I've been fighting PCa for 26 yrs now and have gone thru 8 Dr's.. (One of which I fired for her lack of knowledge) Good Luck
If what you are doing now is working, stick with it. You are responding well to your current treatment I would keep zytiga in my arsenal for a future treatment if needed. I am big on sequential treatments. It has kept me going for many many of years.
Add Zytiga now IMHO. 2019 RP followed by 2 years ADT + Zytiga. 39 IMRT sessions 4 months after RP.Coming to the end of 2 years of ADT.
Psa <0.01 and T < 1. G9 (4+5)
I believe in the scorched earth approach to cancer treatment and your case is a prime example...single mode treatments often fail because of micro-metasasis.
Such a great discussion to see how various treatments have worked for different patients. I'm definitely a newbie in the advanced scheme of things and have been paying attention to all the different sides of this game.
I am of the mindset just throw everything which includes the kitchen sink and the whole damn house at this thing as early as possible, lol. I'm also seeing some interesting effect by not waiting until failure, in order to apply a treatment modality. All very interesting to be sure because my reading in the past was showing that traditionally, burning a line of treatment, meant its use was no longer possible in the future. What we are finding today is that some treatments can be reused, or even reset earlier treatments, that had been exhausted or used until failure. So I find these discussions are useful and educational.
All in all, it exposes to heterogeneous nature of our disease, and how different we all really are, your potAto isn't necessarily my potaato...
I'm leaning toward not waiting until failure to throw some acid on this stuff and let it burn! Why wait and let it mature, let it figure out how to become resistant, grow those AR receptors, etc.? Kill all and keep killing it, but do so by changing things up, keep it off balanced. Sounds like it makes some sense? No? No simple stay here until it doesn't work anymore. Like the typical Lupron/ADT, then ADT with another drugs when it fails... How about ADT, then just because, say a year later even when things are good, switch it up!? Then a year later, go back... Interesting in my mind. But I also see the numbers of the study after study that has traveled treatment until failure and there's some security in following the SOC and avoiding the unknown. I guess part of my thinking is because the fairly unique presentation of my PCa and my thinking that this should allow me to escape the bonds of SOC and do whatever I want or can. Unfortunately, the medical community I've been exposed to so far isn't so adventurous, lol. So we shall see (going forward).
I've been on this journey for three years. Docetaxel at the beginning and continuing with Zoladex (similar to Lupron). Added bicalutamide 6 months ago. Still castrate sensitive. PSA 0.08. Bone mets no longer visible.
I asked my oncologist last month about the PEACE-1 study results and asked whether I should add abiraterone now. Her advice was to continue with what is working and hold abiraterone in reserve for the future. She said the PEACE-1 trial only examined men who started abiraterone at diagnosis. It did not look at whether there was any advantage to adding abiraterone several years after ADT treatment had started and while the ADT was still working well (my situation). I trust my oncologist and will follow her advice.
Encouraging news, stay the course and always positive, I had a RP 6 years ago and did not have any problems for 5 years; did not do any kind of treatment as my PSA remained practically at 0 but in Sept 2020 things changed and I have been on this medical journey for the last 7 months. It seems that taking these 90 days to recoup and rest have been quite beneficial. I will see the doc first week in August and will make a decision about the Abiterone. Have an awesome day ! 👍
Hello folks, I'm the wife... :)After the recent results of the PEACE1 study and consulting with his MO we have decided to start 1000mg Zytiga/5mg Prednisone daily. Recent PSA 0.03. Hopeful Zytiga will decrease bone mets as this is a source of ongoing discomfort.
Thank you for the feedback and for sharing your experiences. This disease is a beast that we are challenged with but everyday is an opportunity to live and learn. This forum has been a great source of information and solace for us as we continue on our journey. Grateful to all that share. 😇
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