My husbands journey started 5/2018, PSA 148, went to dr, got another PSA up to 153. Started lupron injection 6/2018 got another PSA one month later down to 99. Started zytiga/prednisone 7/2018 two months later PSA 4.5, it has continued to go down. Dr. App 10/2018, PSA 2.5 still getting Lupron injection.
Dr.App 12/2018, PSA 2.3, needless to say we’re over the moon, side effects the hot flashes are intense and comes in waves, he’s gained weight in the midsection, not happy about that!
I wanted to thank all of you, for your post, I’ve been reading this site, since our journey, they’ve been invaluable, I’ve cried and prayed for all that have this disease. I wanted to share our journey, with the hope it will help others to keep the faith and the fight.
Remember, you can live, with cancer...
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Trinity101
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Stay strong, prayerful, knowledgeable and proactive in his treatments. Remember the decision is yours not there’s, whatever course of treatment you guys decide.
If the hot flashes are intense, he can ask for an estrogen patch with tamoxifen. It may also help preserve bone density and lean muscle. Other medicines include venlafaxine and Megace - but they are usually not as effective and Megace causes weight gain. Herbal remedies have all tested badly, but auricular acupuncture works in blinded, randomized trials.
Thanks, we’re trying the venlafaxine, just started, I like acupuncture advise will check all of them out.
He was recently given the generic Zytiga, not good, they say it’s the same, but we don’t agree!, it upsets his stomach, makes him tired and washed out, plus the flashes are worse. Starting back on the real stuff Monday.
Tried Venafaxine for about 12 weeks. Eye sight went from 20/30 to 20/200, lost balance, hot flashes doubled and were stronger, supper weakness in legs ,Periferal neuropothy increased. Obviously we didn't get along. Off for 8 weeks now . Strength coming back, balance almost back to where it was, vision improving( back to 20/70), hot flashes back to about 3 / night and without the sweats. Good luck with new meds. but don't be afraid to stop them if not working as advertised.
Also had to cut Xtandi when it made me an invalid. See my tale if you want more info.
My husband has been on the exact treatment plan (lupron, Jevtana 10 rounds, zytiga), same side effects (weight gain, hot flashes, fatigue), he pushes himself to go to the gym EVERY DAY which greatly helped fatigue, hot flashes, muscle retention. He is classified as in remission. He is 1/2 way thru Raduim 223 course, dr has taken him from 4 zytiga per day to 1. We've been at it 11.5 months. Keep the faith and keep going!!
What made the dr decide to lower the dose of Zytiga? I’ve only heard of the 1000 mg dose per day. I like the idea but was told 1000mg was the therapeutic dose. Anyone else doing this?
Based on my husbands amazing response to treatment (tumor gone, psa has remained at 0.01 for the entire course) and the continued steadiness of his labs. He is 2 months from completion of all treatment except Zytiga which will continue thru September
"Mets" is an abbreviation for "metastases", that is, where are his lesions or metastases located? From your post it sounds like none were identified at time of diagnosis.
Thank you for sharing your story. May I ask the age of your husband? My father is 93 and he was just recently prescribed Zytiga and hasn’t started taking.
I’ve posted this several times, must be getting boring for regular readers.
I’ve been taking Zoladex plus Abiraterone and Prednisone for 7 years now. As part of the U.K. STAMPEDE trial in which arm G added Abiraterone at diagnosis, and there are quite a few of the 1900 in this cohort who have done remarkably well.
PSA @ dx was 571, currently immeasurable. 7 major bone Mets to Skull, shoulder, two ribs, pelvis and both femurs, plus a few little ones.
All the side effects except muscle wastage disappear after 3 to 4 years. It pretty much parallels the menopause. I now live a fairly normal life, absolutely no changes to diet or additional supplements, I enjoy alcohol twice a week (it’s a testosterone suppressant I told my Oncologist!). Muscle wastage and the Mets in my pelvis and femurs have been the single biggest challenge.
As an aside, did anyone see the ‘doctor’ who developed the Ph (alkaline) diet has just been hit with a $105million dollar fine for being a charlatan and effectively giving a poor woman a death sentence by telling her to avoid conventional treatment for breast cancer. If only Rick Simpson could be brought down the same way, the world would be a better place.
While waiting on test, dr. put him on lupron, PSA went down, not until Zytiga was added did we see the PSA really drop. I look at it as putting on your rain coat(lupron) and hat(Zytiga) when going out in the rain.
I’m given to understand from the STAMPEDE trial results that the combined effects of Zytiga and Zoladex prevent the PCa becoming CRPC. It stops two pathways of testosterone production.
Earlier, it was given when PC had already become CRPC, and had a average improvement to OS of 4 months, around 16 months in total.
Taking the two drugs together has increased OS by 40%, and in some people like myself, considerably longer. As I said, I’m at over 7 years since dx.
I just have to find a doctor who will give me the zytiga because soc scans can't see the cancer yet. And my current doctor worries about my coronary artery disease while on zytiga.
I had a RP in Jan 2018. Gleason 9. PSA prior to surgery was 1.75. Met to lung only. Was started on docetaxel/ casodex/ lupron. Had a disected carotid artery. Had to be treated with blood thinners for 3 mo. OD decided to change to zytiga and prednisone/ along w lupron. PSA have been running <0.02 for last 10mo. Last Cscan showed reduction in size of lung nodules by >50%
I would be happy if I could get the same longevity results, but my Gleason 9 vs 7---- it's very questionable. I hope and pray you continue with your good results
I went on Zytiga for 40 days and my PSA went to 0.05 and testosterone from 500 to 7! Bad news is I am one of those people with liver reaction and my enzymes went to 10 times normal! So, went cold turkey, had another liver test which was back to normal. Now on a lower dose of Zytiga and hope this dosage will work
Thank you for sharing. I have just started my prostate cancer and had spread to the nearby right hip. Started treatment in Dec 2018 with some Lucrin as well as another drug for hormone suppression. In one month, the PSA drop from 126 to 25. The doctor has just started me on Zytiga ( with pensolsone) . Reading your post, I am reassured about Zytiga effectiveness . Thanks
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