Background/History: RP in 2011, 1st BCR (Recurrence) 06-26-2015 at 0.4. IMRT (Radiation) to Prostate Bed completed 09/2015. PSA undetectable affter IMRT. 2nd BCR 08-25-2017 at 0.2, currently at 0.5. PSADT is 7.3 months per MSKCC Calculator. I am being treated at Johns Hopkins (JHU).
Met with MedOnc at JHU yesterday and the recomendation is to wait 3 months and have a CT and a Bone Scan. Based on those results we will move forward with treatment.
I want to follow the advice given here and get on the NIH Clinical Trial for (18F) DCFPyL PSMA Pet Scan. Hoping for Oligiometastatic result and further radiation. Doc says I need the CT and Bone scan first and then an additional 6 weeks to get through the line at NIH for the Pet Scan Trial. This will be approximately 5 months after my 0.5 PSA result and I estimate I will be at 1.0 PSA at that time.
Doc gave me 6-9 years of life based on the PSA Doubling Time and told me I am early Stage 4.
I emailed another doctor at JHU and he stated confidence in my doctor (that and a quarter).
I guess I am now a little down about this news and wonder if anyone has any thoughts on the treatment plan and years to live estimate.
Thanks very much. Jim
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Moespy
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Thanks Tall Allen. MedOnc told me that study was suspended but may resume in the future. I would definitely like to be in this trial. Question for you.... if you were in my shoes would you wait 3 months for the CT/Bone Scan or would you ask for ADT now? I appreciate your advice and opinions. Jim
I'm not in your shoes, and neither is anyone else -- only you can decide what risks you're willing to take. But I'm happy to discuss the evidence with you.
I will add that oligometastasis-directed therapy hasn't had impressive results so far:
It is very unlikely that a bone scan/CT will pick up anything at your low PSA (even 3 months from now). Bone scans typically won't show mets until PSA reaches at least 10.0.
I should also add that the TOAD study showed that there was a benefit in starting intermittent ADT earlier instead of waiting. But it only had 5 years of f/u and was under-recruited. It does suggest that systemic reduction of the cancer has a bigger effect than the selective pressure driving castration resistance.
Great! This makes me feel better about my MedOnc as she stated that many have tried the SBRT route for oligometastasis but so far they have all ended up back in her office. I did not like the statement but at least it was accurate.
I just sent an email to Dr. Denmeade giving him my background and requesting an appointment to discuss BAT.
I beleive my MO plans on putting me on ADT immediately after the CT/Bone Scan in 90 days. I am hoping that these 90 days that I am not on ADT will not have a significant effect on my survival time. I really appreciate you taking the time to provide this information! Thank you, Jim
TA, please see my last response to Gourd Dancer where I state the treatment path I have landed on. Want to thank you for sharing information that helped me to reach my decision. Certainly would welcome your thoughts on my conclusion. Thanks again, Jim
"Early" chemo in all studies that looked at it (CHAARTED, STAMPEDE, GETUG-15) meant chemo AFTER metastases had been discovered on a bone scan. GETUG-15 found no benefit to early chemo. CHAARTED suggests a benefit ONLY among those with high volume of metastases. High volume was defined as visceral metastases or 4 or more bone mets with at least one beyond the pelvis or vertebrae. Some (like Antonarakis at JH) believe the results apply to any men with detectable metastases. But there is no evidence to support use of chemo when mets have not yet been discovered on a bone scan/CT.
There is evidence to support the belief that the metastases must biochemically progress to a certain point for chemo to be useful - otherwise, you are just adding toxicity and selecting for docetaxel-resistant strains. In high-risk men with localized PC, docetaxel did NOT contribute significantly to progression-free survival when used after RP in these trials:
Apparently, you have to fish when the fish are biting - and with the right bait. "Being aggressive" for its own sake may make you feel better psychologically, but if it doesn't contribute to survival and only adds toxicity, what is the point?
Thanks TA. Still on a huge learning curve here. 7 years in with PC I would have hoped I understood the stages of my progression and treatment options a little better. I now think maybe going on ADT now is better than waiting the 90 days for the CT and Bone Scan but I am no longer confidant on that thought process either. Hopefully my MO will give me a good direction with her reply to my email.
I had the 18F DCFPyL PSMA scan done at JH through a clinical trial by Dr. Kenneth Pienta. It was a "utility" study and they did require the CT and bone scan first for comparative purposes. My PSA was about 1 at the time and one met detected in the hip. Dr. Tran tried to recruit me for his SBRT trial, but I opted to start ADT immediately and get SBRT in Boston, closer to home.
Hi jdm3, really appreciate you sharing that experience at JHU and putting my mind at ease about the CT/Bone scan prior to the 18F DCFPyL and your PSA Level. Have you completed the SBRT in Boston and if so how did it go and any results would be appreciated. Thank you! Jim
I had the SBRT in December 2017 and also started ADT at the same time. I had a 3-month PET scan and a 6-month PET scan to look at the met and the doctor wrote the following... "We can say with certainly that the tumor is not growing, so it is either dead or dormant. No matter what scan we use, we can never say with 100% certainty that every last cell has been killed. However, based on the experience with bone SBRT for prostate cancer, we know that there is approximately 90% chance that the tumor will not recur in this location in the future."
The complicating factor in saying with certainly that SBRT has been effective is the fact that I started ADT around the same time. It is possible for ADT alone to keep tumor under control for some period of time, though not permanently. Thus at this time we are unable to say whether it is SBRT, ADT or combination of the two that's keeping the tumor under control. Time will tell us for sure, but I am hopeful that we took care of tumor in this location for good.
Thanks for sharing that result; very encouraging news! I wish you continued success! jim
No advice here only a question. If he is "early Stage 4", and he is based on my experience, why no chemotherapy to kill the little unseen bastards floating around in the vascular and lymphatic systems? Discuss micro-metastates with your pro. Your is in good hands, yet, ask.
I admit that I am biased toward aggressive treatment, most are not and prefer palliative do no harm therapy with eye toward longevity. Best of luck in treatment.
Gourd Dancer, thanks for this reply and a great question I wished I had discussed with MO. I was thinking I was early for chemicals and may be able to delay with further radiation. I agree that either Docetaxel or Abiraterone should be administered early. My current thinking, as a layman, would be to have the 18F DCFPyL Scan, and if oligiometaststic, get the SBRC and then a chemo regimen with ADT started immediately. Hope others will chime in on this thought process and I will email my MO for clarification. Appreciate the response. Jim
Moespy, we are all different with varying progression and scope of disease. And, because of that, we all have to make decisions based on the Medical Oncologist recommendations. I was most fortunate that he spent a little of two hours, discussing my disease, a little history on how treatment unfolded and developed, and explaining what he could do for me based on his research. This discussion gave me a solid understanding; coupled with nightly research, it was easy to decide to enroll to give me a chance. The palliative solution offered, at the time, 2-4 years, maybe five years according to material available at the time. Great strides in fighting the disease and the development of silver bullets to add to one"s arsensal have been developed over the past 14 years.
Me? I enrolled in a chemotherapy-hormone therapy within six weeks of developing mets. I had brachytherapy and 25 sessions of IMRT as a primary treatment within a year I had mets. Mattered not my primary treatment, I already had the little buggers, yet unseen, floating around looking for a place to land and grow. And, they did......
Hitting PCA with chemotherapy while the body is strong and the tumor burden in minimal is key. I have posted my treatment protocols in the past. It was vastly different than the current standard of care. Essentially I had weekly infusions and several orals over a six month period given in three cycles. Heavy duty and aggressive.. oh, my first Lupron injection was May 10, 2004 and my last, February 20, 2010.
I went over my previous notes and found that I discussed with my MO a year ago that I wanted to follow the new protocol of early chemo and ADT once my PSA got to the required level. Unfortunately, I get confused easily with all of the information I take in and started down the road of PSMA scans and further radiation. I mistakenly took that protocol for delaying the need for chemo and ADT. Now I think I have it straight as to what I want for my treatment path. A couple of hours ago I emailed my MO stating I would like to move forward with Docetaxel and Lupron at earliest opportunity as well as moving forward with the CT and Bone Scans in 90 days. I also told her I wanted to move forward with the DCFPyL Trial Scan followed by SBRT and/or surgery afterwards, if applicable. I feel much more comfortable being aggressive than waiting. Information garnered from responses to my post on this forum and lots more digging prompted my decision to take this path. I wish I could have organized my thoughts a little better before I met with my doc last week but like most people I get more focused when I get real scared. Thanks very much for sharing your information!
My comment is "Doc gave me 6-9 years"... forget those numbers.... It's a guesstimate... with new meds coming around the bend you'll live long enough to become an annoying old weirdo like me.
That PET Scan should be conducted with Axumin. This will tell you exactly where the PC has metastasized (and only PC), regardless of your PSA level. Your treatment decision can proceed from there. Like Tall Allen says, no one can be in your shoes, but many of us are following your path, or have already been down your path.
If you have a high Gleason score then waiting on ADT, or taking a "Lupron holiday" may not be in your best interest. Please discuss with your MO. My urologist now wishes, in hindsight, that he'd not had me take a 2-year ADT "holiday" after 4 years on Lupron. The goal was a noble one...give me back some of my life, reduce the effects on bone loss. But the outcome was metastasis to three areas that had experienced surgical trauma during or after the RP...an outcome that probably would have happened anyway.
My husband had the Axumin scan when that was the latest and greatest avail in US. In hindsight we would have waited for the PSMA scan if I had been informed. Of course the logistics would have been more difficult.
Well, I have learned a lot now from all the replies to Moespy. With one thing I must agree: start with ADT as soon as possible. It will get the situation under control. From there on you can add any treatment. Here in SA we use 3 month Lucrin. Maybe a bit more bearable than the 4 month Lupron. Good luck, and please scratch that date of the calendar. For all you know you will die in a car crash or heart attack. Thank God for every day. TC.
Received a reply from my MO to my request for aggressive treatment now (Lupron, Chemo, Zytiga) rather than waiting for the CT and Bone Scans in October. She said that the JHU standard is scans first then treatment.
She did offer to have me come in sooner for the scans but I declined. I have concluded that JHU knows better than me and I will stick with the plan. I also see Clinical Trials out there that are looking for patients not yet on ADT that I can still consider after the scan results.
In hindsight I would have liked to ask my MO to tell me the various treatment paths to consider based on the possible results received from the scans. This would have given me something to research while waiting these 3 months.
Still on the desired path to the new PSMA scan trial at JHU or NIH and hoping for oligiometaststic so I may get some benefit from another round of radiation.
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