I have been told I am now Stage 4- PSA doubled in past 2 months from 6-14, T now is 51 after 3rd Lupron shot, with sabbatical to every 6 mos.
Onc gave me these 3 options along with Patient Education from Kaiser. After reading about possible side effects, has anyone had experience and suggestions for best journey? SBRT was a breeze compared to these "warnings and side effects". I am currently asymptomatic. Small mets in several bones are indicated as well as in seminal vesicle. She indicated my cancer might be low load.
Treatment Plan:
Chemo once every 3 weeks for 6 sessions.
Pills daily until their benefit runs out.
I am 77, Dx in 2013, SBRT in 2016
Written by
arete1105
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Your T should be lower than 51 after 3 Lupron shots; consider switching to monthly Firmagon. You're not really castration resistant with T that high. There has been some success in clinical trials using ADT with Zytiga or with Erleada for intermittent ADT:
Studies show similar outcomes with Zytega and Lupron vs chemo and lupron. I did all three and hit my three mets with SBRT. All the side affects were tolerable especially with exercise. I did the meds for 21 months and hit .02 psa. Now on a “vacation” for 9 months with no issues yet. Stay tuned.
Im on zytiga now. Have done chemo 6 x. 3wk apart 1radiation. Lupron shots every 6 mo. Xgiva every mo. The zytiga side effects hot flashs dome nite sweats. Worst is rise in blood pressure. Had tp increase blood pressure med by 20mil. Psa is lower than ever 0.022. Has held for six mo.
Well I’m nine months in now after 21 months on. I had originally a 14 needle biopsy that found nothing. So I did an mri guided one on the small spot they saw in my prostate and it did only 3 cores that were all Gleason 8. Good lesson for Mri biopsy - 0 for 14 vs 3-3.
Because it was such a small area of disease, I had a focal chryo procedure (with big margins around the cancer area) about 9 years ago (with zero side affects) and my psa stayed steady around 4 (remember I have 60% of a healthy prostate so some psa is expected) for 5 or 6 years. Then about 3 years ago my PSA started going up to 8. MRI and Doppler at the time showed nothing in prostate so with a rising psa it seemed I now had a healthy prostate and the horse had left the barn before my procedure.
I paid for the best scan at the the time in Arizona (C-11 acetate) and it showed three small spots on pelvis and ribs. They and UCLA’s nuclear medicine department both said were “highly suspicious for mets”. So on My MO’s recommendation I hit it hard and early with chemo SBRT on the Mets, Lupron, Zytiga and Zometa with Celebrex. After 21 months with the last 10 at .02 PSA, My MO (and Dr Drakaki of UCLA as a second opinion ) Suggestted a vacation with monitoring. My monitoring however is different than most because my PSA is expected to go up (with or without cancer ) because I have 60% of a healthy prostate . so The psma scan at UCLA will be my best way to monitor along with the psma scan and other markers. I did a psma scan at the start of my vacation for a baseline to help avoid false positives. Then when my psa hit 2.0 last month it was time for a new scan. I did (at ucla) and it found zero changes plus nothing left of the three mets that I’d shot with SBRT. My CRP is steady at 0.4 (not your undetectable - but pretty good) nothing on my circulating tumor test and all my other markers are normal. Oh yea, on MO ‘s recommendation I’ve cut out 90% of meat and my PSA just came back at 1.4, down from 2.0.
My MO is awesome. Dr Scholz. He’s part of a three doctor team with over 2800 patients. Many on this site go there. I just had lunch with Dr Scholz of prostate oncology specialists on the subject. Scholz is very high on the SBRT to mets in ogliometastic men and hitting it hard early. He says he has some men he thinks are “cured” from that protocol with well over 10 years of health and many more that stay clean for 8 years or so before they have to go back in treatments. He and Dr Drakaki at ucla Both agree that as long as my scans stay clean and psa isn’t going up I can stay on my vacation. I still use metformin and statins and stayed on the zometa and Celebrex until last week. And I lift weights very hard with a trainer 3 times a week still.
Sorry for the long answer but I wanted all the readers to see my protocol. My plan was to stay on my vacation until psa started rising again towards 3 and or my other markers started to indicate a problem or my psma scan showed any activity. Your story and protocol give me pause tho and I did tolerate the Lupron/Zytega quite well so love to hear yours and other thoughts on the subject.
At age 77 Taxotere and Zytiga and ADT will reduce your quality of life greatly. If you were castrate I would hope your T would be close to 0. Perhaps the disease progression will then slow to a crawl and you live to be 83 with a better quality of life. So you are or are not castrate resistant???
Tucson, AZ. We currently don't have a MO; the reason I'm asking about yours is he/she does what we want - ADT cycle on and off. If we can't find one here in Tucson(AZ oncology or UofA) or Scottsdale(Mayo) that supports this approach we would be willing to travel to one that does.
Thanks Nalakrats. I've talked to whimpy and he recommended a cancer naturopath here in Tucson. I didn't ask him if any of the MO's he's used are open to intermittent ADT so I'll ask him specifically about that.
Thx as always for your thoughtful and detailed response. Lots of “food” for thought. Greatly appreciated. Say hi to the wife and tell her yo enjoy the Russian. Shalom.
I'm familiar with Liebowitz's work. I may be mistaken but I thought it was referred to as BAT. Not up to date on the term "5-alpha Reductase program and E2". Could you further explain.
Just started ADT after 12 years RP & SBRT. The MO that I'm with presently with is associated with Hartford Hospital. His plan is to have me on Lupron and Zytiga for 24 months. Next appointment is April, looking forward to that discussion.
Stage 4 here. After chemo I continued lupron and Xgeva shots monthly, my doctor and I chose Xtandi that was 37 months ago. PSA is <0.05 ever since the chemo. Side effects are manageable. Be careful with the pain meds.
I can't give you the advice as some of the Brothers here because if their expertise but I can tell of my condition , and treatments. My MO started me out on Zytiga,Prednisone, and Xgeva for the bone Mets that was February 27th 2018 I'm now on just the Zytiga and six month Eligard injection. My numbers were similar to yours and have been 0.1 PSA since first month treatment. The side effects for ADT are varied mine are relatively tolerable hot flashes, belly weight gain , fatigue they are all manageable with staying active I also had Provenge infusions back in June no side effects other than the chills but it was short and minor. Don't get me wrong it is definitely a life style changer and does a number on your libido , and overall way of life but the key word in my statement to you is life. It is keeping me alive and buying me time. I wish you the best and don't worry too much about the side effects. Leo
Hi have been on Zytiga last 2 months along with steroids, been on Lupron for a year and 3 months. Prior to that had Firmagon injections for 2 years every 28 day injections. PSA has played up and down over that time. Been stage 4 over 3 and 1/2 years. Things were going ok til about 4 months ago. Starting to have issues with PSA and Hip pain. Radiation treatments (10) helped that but not all the cancer that spread in the Hip and bone marrow. Did take 45 treatments of Radiation on the prostate 3 1/2 years ago. NO side effects on the Zytiga.. will be getting full round of many scans 1st week of march to see if this is working. Currently the spread was worse. Many multiple cancer issues on my Spinal column from base of neck to mid back as well as 2 Rib areas. This is a TRUE test for Zytiga.. It is the best treatment right now. Never did Chemo 71 years old and maybe that was not an option ?
I am a positive person.. We may be on a course with these meds that could give all of us help.
I can’t thank you all enough for this post. We have had a rough time trying to find an Oncologist that thinks outside the box and synergies with us and our Urologist Dr Kwon who we are very happy with. We still do not have a MO and we really need one.
Nalakrats.. I’m excited you live very close to us. We can commute to Charlotte easily from Wash DC. Would you mind sharing who you see or messaging me?
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