Hi
Recently diagnosed. Recently started ADT following RP. Getting reputable oncologist saying 12 month of therapy vs 2 years. Anyone have words of wisdom? PSA is not undetectable.
Looking for others with stage III on ADT - Advanced Prostate...
Looking for others with stage III on ADT
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John-carp
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So you had your prostate out, but you still have a PSA reading? That does not seem perfect. PSA is made by prostate cells, so you, obviously, still have some of those cells inside you someplace.
The first suspect is that there is one lymph node that they are stuck in playing bumper cars. That would be super, and if you found that lymph node and took it out, hooray. But that is also wild speculation. Any chance that someone could locate the cells? ADT puts them to sleep; a nap. It would be lovely if you got someone responsible to say what they think is going on and why they think it. For example, what is supposed to happen in 12 months or 24 months, or ever for that matter.
It would be shame, now that you are so close to zero, to let the cancer incubate and grow up to be a healthy little monster. Call me paranoid.
To be really paranoid, a zero PSA does not mean anything, :-), although I assume this early in the course of the disease, it is a little early for prostate cancer to flip into stealth mode.
Just to make this a little longer, I have heard of radiation and supplemental ADT (because the radiation level was too low, 70 gy instead of 79 gy, oops), and I have heard of RP and supplemental radiation (because the margins were not clear?). I have not heard of RP and ADT. So I can't comment.
John-carp in reply to
Hi
Thanks. So pre surgery they found my Gleason was 4+3. They felt it was stage II so they proceeded. When they went in they pulled a bunch of lymph nodes and one was positive but negative margins. The post surg PSA indicated it was around - as you say.Bb They -big academic university bin CA and 2nd consult said that they felt it was not targeted by radiation and non specific in its location. There put ADT to have it nap with the hope that after a year or 2 it may have been long enough to kill it. What do you thin
in reply to John-carp
Well, I haven't studied biology, organic chemistry, histology, anatomy, immunology, urology, surgery, pathology, chemotherapy, radiology, nutrition, applied genomics, statistics, modeling, genetics, microbiology, or oncology,
but I think without knowing more, it is hard to say. It might be "all over" and it might not be "all over". In both meanings. Sorry. In both meanings.
in reply to John-carp
Just another downer thought: some cancers "immortalize" - they refuse to die. Death of cells is healthy for you; since you get fresh new ones. But part of the breakdown in the cell regulation in cancer can be the loss of ability to die off. Yes, weird. Unfortunately this failure in the cell mechanism might allow it to survive this Rip Van Winkle treatment.
Hi John-Carp. I feel for you. I hope you had consulted more than one specialist before you decided to accept RP. In 2002, I too had Stage III with a DX of PSA 24 and Gleason score of 8. My urologist told me that I was not a candidate for prostatectomy because of the high possibility of extra capsular penetraton. He advised me to look for non-surgical primary treatment. After a few months of deep and urgent research and narrowly escaping two conventional treatments (EBRT and HDR) I wound up going to Loma Linda University Health Center for proton beam therapy It was the best decision I ever made in my life. Although I am not cured (hardly anyone ever is) I have been on remisson for 14 years, will be 78 in January and I live an active lifestyle. As expected, my PSA eventually continued to rise over the years and I dealt with it by an ADT protocol called Intermittent Androgen Blockade (IAB) It was my own decision, circumventing my Loma LInda doctor's advice to go straight for 24 months. It consisted of nine months of three subcutaneous injections of Zoladex and daily Casodex. When the PSA dropped down to undetectable, I stopped the IAB and enjoyed a vacation from ADT. As time went on, the vacations got shorter and shorter until recently I reached CRPC (castrate resistant prostate cancer) Time to switch ADT protocols and the only one available for me was ketoconazole, which acts by blocking androgen receptors. I am not eligible for the more advanced CRPC treatments like Xtandi and Zytiga because the latest body scans show that I am not yet metastatic. Wonderful!! Besides, I read about horror stoties about those two. I am positive that the reason that I have gone this far without any detectable mets is that my primary treatment was proton beam. When I had it in 2002, there were only two in the world that had hospital-based proton beam treatment, the only other one of which was Harvard. I lived in Masschusetts but they rejected me because of my high stats and they were just starting. Since then, proton beam centers were opening in such a fast pace all over the world. Google proton beam and you will get the picture. Why don't you try and find out if you are eligble for salvage proton therapy. Good luck, my friend.
Neal-Snyder in reply to
I just want to say there are plenty of favorable stories about Zytiga. I'm less able to comment on Xtandi because I'm still on Zytiga after 2+ years, & some guys have been on for considerably more. The only problem I have is from the prednisone, which causes easy bruising for me. They cut my dose in half, & the bruises are more mild.
My husband had RP in 2007. His psa had been 70 and final gleason of 9/10. his post psa was .03 which they thought was good and might settle down after a few months. Instead after 6 months it started to rise. There had been seminal vessel involvement in his RP but nothing in the lymph nodes. 8 months after surgery he started Lupron I think for 9 months, 3 injections? and radiation in the hopes it was just in the pelvic area. His psa dropped to .01 and stayed there for approximately 3 or 4 years with no change and no rise. in 2011 it started to raise slightly. It has continued to rise very slowly. He now has bone mets. But overall he is doing well. I believe the way he was treated in 2006 was the right way and has given 10 years without any further treatment. His doctors are considering new approaches...surgery to remove the first bone lesion on his clavicle...there's also a small lesion in the pelvic region. They will deal with clavicle first which was radiated last year, but pain is increasing and they feel surgery will have a positive outcome on pain and getting ride of the lesion.
I hope this helps you make a decision. You have our prayers.
John, I would be remiss if I didn't share my story with you. First I am not person with medical training.
Initially diagnosed with a Gleason (4+3) with PSA of 6.8. Google ""gourd dancer prostate cancer" and you can follow. After primary treatment my PSA never really came down. At 10 months it started climbing. By 12 months is was 32.4 with mets to T3 & L2. I immediately entered into a chemo trial for six months with a medical oncologist at a medical school who spent his career in academia researching prostate and kidney cancer. 12 1/2 years later my PSA is undetectable and mets are resolved. I stopped taking Lupron six years ago. I started wearing a 4 mg testosterone patch two years after that. I have no signs of cancer in my body. Am I cured? I don't know, I am a realist, but I like the odds.
I'll never forget my medical oncologists words, "Mike, no matter was primary treatment you had, is was too late as the cancer cells had already escaped and where floating floating in your vascular and lymph systems just looking for a place to land."
I went very aggressive in treatment and have never looked back. You might inquire about a short course of adjunctive chemotherapy to attack the cells that are surely floating around in your system just looking for a place to land. Pallative treatment of Lipton will not keep the cancer cells at bay. Maybe a year, maybe 10 years from now cancer will rear its ugly head and strike.
Keep kicking the bastard,
Gourd Dancer
in reply to
Those who claim that cancer cannot be cured once metastasized, those people will one day be proven wrong. But I hope not (for their sake) lazy.
yope4 in reply to
I'm curious who and where is your onc doc. He's a good to know resource who specializes on our disease.
Thank you for sharing with me. It is so helpful to hear
Hi John,
I have been on ADT4 continuously since 2011. Diagnosed in 2008. PSA recurred 3 years after RALP, IMRT and one year of Lupron. My current PSA and T are undetectable. No mets. Fortunately, my PCa doesn't appear to be aggressive.
For great information on most aspects of PCa see the excellent site created by Chuck Maack. Unfortunately, Chuck was forced to stop updating the site several months ago due to health.
theprostateadvocate.com/obs...
Good Luck, Clint
John,
Yes, there are still cells in you, the goal for you now is to try and find out where the little buggers might still be hiding. If you are able to find the cancer site(s) then you might still be able to go after them. Current, cutting edge thinking, is that oligometastatic prostate cancer (a few sites) which is what you might have can be successfully treated if the sites can be identified and if they are in places that either surgery or radiation could remove them.
Currently approved scanning contrasts are not as effective in identifying this tiny sites, however, the good news is that there are a few contrasts that are in clinical trials that seem to be more sensitive and are able to pick up these little sites more effectively. The two better know contrasts are C-11 Choline and PSMA.
C-11 Choline is available at the Mayo Clinic in Min (reach out to Dr. Kwon) and the PSMA (which I believe will probably prove to be superior) is in trial in a few locations, including the NCI. (Go to ClinicalTrials.gov and search for PSMA PET/CT Prostate).
Oh, you didn't tell us what is your current PSA, that can matter as these contrasts do have minimum PSAs before they can detect anything.
Joel
Hi Joel.
I am currently undectable on the ADT. Would the scan be appropriate while the PSA is undectable?
Joel
How wild I get a hold of dr Kwon. Just call the clinic?
Mayo Clinic in Minnesota
507-538-3270
7 a.m. to 6 p.m. Central time, Monday through Friday
This is the main appointment number.
in reply to John-carp
Here is a link to Dr. Kwon's lecture on oligometastasis:
youtube.com/watch?v=Nkqizmv...
Very informative and impressive. If I were not 78 years old come January, I would be tempted to try it out. I probably would not be accepted given my age anyway but younger ones with more recent recurrence would benefit.
Fred
John-carp in reply to
Hi Fred
Very compelling. The UCSF docs do not think the San is appropriate as my PSA has not doubled so they went right to ADT. Do you have to be in a trial to get the scan
Hi
Pre surgery PSA was 11. Gleason 4+ 3. Post surgery PSA was .87. Decipher .85. Gleason 4+3. PT3aN1. Not a candidate for clinical trial with imaging. My overall health is 9/10 as a 55 yo. They get could not target anything so no radiation. I remain in ADT and non detectable.
I was diagnosed 2008 w/ Gleason 4+3 (one core positive), PSA 8; pathology report (confirmed by expert) after robotic RP in 2009 found stage III, positive margins, extensive extrprostatic extension, seminal vesicle involvement, perineural invasion. Post-RP, my PSA fell to only 1, so in 2009 began Casodex/Lupron, then IMRT to pelvic bed and pelvic nodes. This was done after standard pelvic CT and technetium bone scan, both of which were negative. I now know these scans are essentially worthless at a PSA of 1. Continued Lupron for 7 months only. (Knowing what I know today, I would continue ADT for 18 months.) Result was making PSA undetectable for approx 3 years, after which I began a variety of treatments (incl ADT) that have once again made PSA undetectable.
Very much agree with Joel that first attempting to locate the cancer is much preferred because it permits focal therapy to those locations if oligometastatic. Today I would research/pursue (in order of preference) 68Ga-PSMA PET/CT (not yet FDA approved but some are obtaining at UCSF), or Axumin PET/CT (FDA approved in May), or C-11 Acetate (Phoenix/not FDA approved), or C-11 Choline (Mayo/FDA approved), plus (in all cases) NaF bone scan. I would also consider pelvic mpMRI. As Joel points out, once you start ADT, this will drop PSA to a level making any of these scans useless. I would consider stopping ADT if that would likely cause PSA to rise into scan-detectable range. You are at a point where you have best opportunity to put cancer into long remission with optimum treatments, but the key is to know as much as possible about its current location. Traditional mindset among too many oncologists, unfortunately, is "once the cancer escapes, it is everywhere." In a practical sense, there's significant evidence that this is not a helpful paradigm when it comes to PCa.
Encourage you to think in terms of combination therapies, regardless of your ability to locate the cancer. For example, radiation therapy plus ADT plus 6 courses of chemo. Re proton vs photon RT, Howard Sandler (Radiation Onc/researcher @ Cedars-Sinai Los Angeles) talked about this two weeks ago at PCRI conference. His conclusion is that proton beam is probably same efficacy as IMRT, but jury is still out; there is a study underway to determine. Re preferred agent for ADT, today I would definitely select Firmagon over Lupron, mostly based on much better suppression of FSH (among other reasons). E. David Crawford (U of Colorado Denver) has published a lot on this, e.g., gotoper.com/publications/aj...
Hi Dave. Thank you for your response. I cannot find adequate words to express how comforting hearing yours and other stories
So if I understand you correctly you would do that ADT for 18 months and then with PSA rise so scans?
John,
My comment about 18 months is the length of time I would use ADT the first time (if I had it to do over), having combined this with other therapies given my high-risk of recurrence. When I wrote my reply I didn't have access to your post RP PSA of 0.87 and your Decipher of .85. That's too low a PSA to expect most imaging to dependably find it (assuming that you D/C current ADT), but I would look into 68Ga-PSMA PET/CT eligibility at UCSF. Post-RP, their data show 71% chance of finding cancer for PSA in range of 0.5-2.0 and 50% for PSA <0.5. Contact thomas.hope@UCSF.edu Their trial protocol requires a PSA > 0.2 for post-RP patients.
Regardless of further imaging, IMO what's missing in your current approach is (1) additional genetic profiling; (2) an attack on the cancer by additional modes that would give you a much better chance for a durable remission. It's important to understand that ADT by itself is almost guaranteed to fail after a period of time (Google this). That's especially true for someone with high-risk disease. You have multiple indicators of high risk: PSA did not fall to undetectable after RP; significant Gleason grade 4; Decipher of .85 (anything in the .60-1.0 range is considered high risk based on their genetic profile algorithm.
The Decipher test doesn't tell you the specific mutated genes/other epigenetic changes, plus any recommended drugs that likely would be active in dealing with these mutations/epigenetic changes. Nalakrats recommended FoundationOne for a genetic profile. They do a very nice job of inquiring mutations from your retained tumor tissue 315 genes and providing suggested drug therapies. They accept Medicare & other insurance. Another option is Caris Life Sciences. I'm not sure about insurance coverage for them, but they provide a more comprehensive genetic profile, looking for actionable biomarkers using NGS (what FoundationOne does) plus IHC and other technologies. This gives useful/actionable info (including suggested drug therapies) for epigenetic changes.
Because of your high risk situation, I would add radiation therapy after a couple of months on ADT (Firmagon, of course). Here is where the value of stopping your current ADT to locate the cancer comes in: best to avoid irradiating tissue with no evidence of cancer, but without the imaging you are left with blindly treating the prostate bed and pelvic nodes (as I did in 2009). Type of focal treatment once cancer is located depends on location; might include something other than or in addition to RT.
I would also add metformin and look over Patrick's comprehensive analysis for a few PCa anti-growth additions.
I would talk to an oncologist or two who have experience with early use of chemo for high risk patients. In light of your Decipher test result, this makes even more sense to me. However, the additional genetic profiling may uncover something less toxic to use as part of your combination therapy. The philosophy is to hit the cancer as hard as you can at the beginning.
Watch out for bone health while on ADT: monitor bone density (baseline now); serum estrogen; alkaline phosphatase at a minimum.
Hi
This is super helpful. Two separate oncologist say nothing to radiate since they cannot localize it. They both prefer minimum of 12 months ADT. It leaves me confused. Thank you
Your confusion is understandable! If you haven't already done this, I would talk to Mack Roach at UCSF [urology.ucsf.edu/people/mac...] and Patrick Swift at Stanford [stanfordhealthcare.org/doct...] Dr. Swift treated me in 2009 when he was with Alta Bates.
Hello again, Dave. I'm a Kaiser Oakland patient. I've seen Amy Lin in Urological Oncology at UCSF a couple of times for consultations. I wonder if you'd mind saying a few words about what made Mack Roach & Patrick Swift special for you? Also, are you a medical professional or scientist? You seem awfully comfortable with all of the concepts & lingo. I imagine that allows you to get the most out of consults.
Thanks,
Neal
Dave, I said "again" because I posted a question for you under your long post above, but it showed up after your next message below. I tried again to put it in the right place, & the same thing happened.
Hi again. How do I find Patrick's response
Here's one way: After logging into the Advanced PCa section of HealthUnlocked, enter patrick in the search box that appears in the upper right corner and hit enter. That will display many of his messages. Next steps: with your mouse, hover over one of his message subject lines (reveals hypertext) and left-click on this text to open that message. Then, hover over his user name [pjoshea13] that appears as blue hypertext at the top of his post. That will take you to 152 posts he has made to the Advanced PCa section over the past 6-7 months, the majority relating to supplements relevant to PCa.
Another way: post a message to him on this site asking for his recommended top 3-5 supplements to consider for someone in your situation.
Hello Dave,
So assuming Medicare coverage (in my case), you'd recommend Caris Life Sciences over Foundation Medicine?
Thanks,
Neal
Hello Dave,
So assuming Medicare coverage (in my case), you'd recommend Caris Life Sciences over Foundation Medicine?
Thanks,
Neal
I have an advance PCa with confirmed met on left iliac LN. My primary treatment was Proton Therapy. After treatment, my PSA bottomed out at 0.5. ADT treatment has brought it down to undetectable. I'm on ADT for 15 months now. An MRI with colorectal coil showed no focal recurrence on my prostate. Most likely, I had micro met PCa when I started primary treatment. And most likely I have undetectable met to other LN and, perhaps, in my blood. It's also possible if I have strong immune system, the met could have been contained in that one LN. No one can be sure. Our best game I suppose once we have a met is to control its progression to extend our survival hoping a more curative treatment would come in our lifetime. There's simply no cure for PCa outside the capsule.
How long one has to be on ADT depends on how one respond to it. There are 2 camps: continuous until failure and intermittent. My opinion is if you tolerate the side effects of ADT well, stay on it. Each treatment kills PCa cells and weaken the rest controlling its progression. Successive scenarios of this is the closest we can come to cure. If you let off the pressure, you allow them to get stronger making it harder to treat. My 2 cents worth.
in reply to yope4
Hi yope4
Glad to meet a fellow proton therapy patient. I was DXd in May2003 with PSA 24 and Gleason 8. I went to Loma LInda for proton and photon and then followed with intermittent ADT (zoladex and casodex) I tolerated the ADT very well till early this year (2016) when I became hormone refractory. My med onc put me on ketoconazole (400 mg 3 times a day) and hydrocortisone (20 mg three times a day. Am now in the process of negotiating with her on the right dosage to control side effects. Down to 30mg hydrocortisone. Hoping to convince her to let me do 200mg 3 times a day of keto. My current PSA is in the range 12 to 17. I understand it takes at least 8 months for the PSA to go down and never really gets an undetectable nadir.
I'm a mentor for Brotherhood of the Balloon, the 5000 member group of proton patients. I get requests for information on my PCa journey at last onc a mnth. Bob Marckini, the author of the best selling book on proton and prostate cancer and founder of BOB and I are good friends.
Regards,
Fred
yope4 in reply to
Fred, I'm happy to meet a fellow PT patient. I would also be happy to get a link to the BOB website.
I was treated at HUPTI. I currently have an undetectable PSA for 15 months running on Lupron. I hope for the best at my next onc appt. I was diagnosed in late 2011 and I'm inspired by the fight of those who came before me and shared their experiences here.
I wish you the best in your fight against this disease. Let's stay in touch.
Hi yope4
Here is the website address of the BOB: protonbob.com/
I need to correct some figures. BOB now has over 8000 members, not 5000. Also, I said that I was diagnosed in 2003. Actually, I got diagnosed in 2002. So that makes me a 14 year survivor. I am seeing my med onc today. I hope she will help me fine-tune my therapy. I was with my family doctor yesterday. We agreed on 30 mg of hydrocortisone plus a diuretic to reduce the edema, a side effect of both the keto and the hydrocortisone. Hope everything works.
Good luck. I hope you will sign up with BOB and will enjoy connecting with other proton patients.
All the best,
Fred
I was stage 4, been on adt for 10.5 years, my psa never went below 3, hang in there , don't worry , live every day.
Nalakrats,
Do you have to have a biospy for a tissue sample or can Foundation One do the test based on fluids such as blood?
Presently, I am having my Genome sequencing, does Foundation One do the same thing?
Rich
I hope you're doing week John-carp ☺ and your psa is still non detectable. Good wishes.
Jackie
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