Thanks to an NIH Clinical Trial and sage advice rendered and received on this forum my treatment plan has changed. I have gone from waiting for my PSA doubling time to reach a critical level to moving forward with aggressive treatment in hopes of beating or beating back my PCa.
My background is:
RP: June 2011 (no ADT)
1st BCR: June 2015. (Back to undetectable PSA with IMRT to prostate bed (no ADT)
2nd BCR: February 2018. Current PSA 0.4.
PSMA Scan: NIH December 2018 (Expression in 1 pelvic lymph node)
Biopsy of lymph node: Last week at NIH found to be positive for PCa.
Met with my RO at Johns Hopkins this morning armed with a plan formulated from information and advice received here on HU. My RO gave me my options and I gave him my plan and he fully agreed this was the best approach. Thanks Tall Allen! Also, thanks to kmack57, Break60, GP24 and 407ca.
Treatment Plan: Started Bicalutamide today and will receive my Lupron shot in 30 days. I have sent an email to my MO asking for abiraterone to be added to complete the ADT treatment. I am not confident that my MO will allow the abiraterone but am hopeful. Will then have 33 or so radiation sessions to the all pelvic lymph nodes. Will continue ADT for an additional 6 – 24 months depending on how I am tolerating the drugs.
In addition to just updating my experience I want to point out how important it is for me that I found and used the PSMA Scan trial and utilized the information received on this site to alter my treatment plan. It works for me!
Thank you!
Jim
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Moespy
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Thanks Jim for the update. I am in the same boat and was planned to do the NIH scan in a couple of days but postponed it until mid next month. I don’t think I am going to do it anyways. I KNOW I have Mets and nothing will work except ADT. I like your plan but JUST questioning the importance of the radiation. I could be wrong ofcourse but feel too much toxicity for less return. I felt the same way before the 39 sessions SRT and it bought me NOTHING except for some annoying side effects and now red blood cells in urinalysis that I have to investigate further.
I should have listened to my MO and started ADT 6 months ago and Nevermind all these tests that will not buy me anything. I wish and hope your plans work for you and LOTS of great luck, Jim
Thanks Ahk1. I know you have been struggling with the path you wish to take. Here is the reason I decided to move in this direction.
I had success with radiation to the prostate bed. The radiation kills the mets you can see from the scan and also the micrometastases you can't see in the other pelvic lymph nodes. The ADT hopefully cleans up the micrometastases that have circulated out of the pelvic area. I think you could reconsider your approach based on this logic but I can't blame you for going with what you think is best either.
The PSMA scan at NIH was a very professional and thorough experience that I am very glad I had done.
I understand your approach Jim and why you are doing it but I need to ask you a question please. What are the end point in your opinion, Are you going for a cure? Or slow the progression? Anyone or studies that showed cure or survival benefits please? Just wondering, that is all
I would love the end result to be a cure or long term remission from progression. I am very confident I will get one or the other. Hopefully if not cured this treatment will push it out far enough to limp into a cure when available. 😊
You are not worried about the toxicity from the radiation? The area is very close to everything around it. Have they explained to you this issue? I am struggling to make this decision
I talked to my RO this morning about that and he told me that I should have equal side effects and toxicity chance that I had withy the IMRT I received 3 years ago. Since I didn't have any side effects or toxicity then I do not have concerns about these issues. I do believe you need to have an experienced RO which I am fortunate to have. Where is your RO?
No, so far. I only had a bone scan and ct scans for abdomen, chest and pelvic becuse it was required by NIH and they are clear hence the psa of .5 and planning to see my MO at end of month. I know he is going to ask me to start adt so I have been trying to think on how to approach him so he can go along with the same route like yours but I know he might not agree :-). He is very well respected at MSK so I am afraid that I am not listening to him
My MO told me that I can go the radiation route but she is confident I will end up right back in her office. That's OK, MO's and RO's have different points of view and likely can be biased to their side of treatment. In the end we all have to make the decision based on what we see and what we feel. Hopefully if my MO proves to be correct in her prediction she wont be saying she told me so for many years!
WOW, she told you that?:-). So it’s not only my MO lol. Is she local to NY? I forgot where you told me which state you are being treated, Jim in one of your private messages:-). I am really glad we are chatting becuse I was dead serious about forgetting the nih scan and now I am changing my mind again sincecwe chatted. I am like this changing my mind every minute. It could be my personality lol. I work with very very complicated engineering stuff that I can understand but for the life of me I can’t understand the situation I am in now with this diseas, very confusing to me
No I don't discuss radiation with her I just tell her the route I am considering or ultimately taking. I like her and my RO very much but also understand the different points of view they have. Having the opportunity to learn where the cancer is and to have options with that knowledge is why the PSMA scan was valuable to me. I live 30 minutes from NIH so a little easier logistically as well. My docs are at Johns Hopkins.
I was told they wouldn't radiate near an area previously radiated because of danger of overlap. I was wondering how Moespy was radiated two different times and is going for a third time? Also, both M D Anderson and Houston Methodist told me they would do the prostate bed and only the lymph nodes that drain the prostate if they were to do it at all. Two MO said not to do it, -- wait till the PSA reached 5 or 10 or until F18 -- c11 or PSMA scan showed mets and radiate then. I had a PSMA scan with PSA @ 0.5 and they found nothing. Dr. Kwon said wait till PSA was 1.5 and come and get c-11 scan and go from there. They also said mets would likely not appear on standard CT scan for 8 years from time of BCR. That is consistent with what the research shows.
The following is from an article about treatment options after biochemical recurrence post RT or RP (if it ever happens). It supports your thoughts.
"BCR after RP:
As mentioned, not all patients with BCR after RP will develop clinical failure; indeed, published reports suggest that an estimated 24–34% of men who develop BCR will experience clinically evident recurrence (i.e., metastatic disease) within 15 years of surgery [21, 23]. Furthermore, it has been estimated that 2–6% of men who experience BCR after RP may die from PCa [21, 23].
"Local therapy for PCa – RP or definitive RT – is curative in many patients, and remarkable technological advances over the last decade have led to efficacy improvements in both RP and RT. Despite this, biochemical recurrence (BCR) – that is, prostate-specific antigen (PSA) increase – still occurs in 27–53% of patients after definitive local therapy [1]. Within 10 years, 20–40% of post-RP [14, 15] and 30–50% of post-RT [16] patients will experience BCR. Once BCR occurs, the patient is understood to have recurrent PCa, even if there are no signs or symptoms of locally recurrent or metastatic disease. Despite signifying the return of disease, BCR alone may have no impact on either the patient’s QoL or their overall survival (OS)"
The Natural History of BCR
Although a rising PSA level universally precedes metastasis and PCa-specific mortality [1], BCR is not a surrogate for PCa-specific mortality or OS, and may pre-date local recurrence or metastasis by several years. On average, BCR precedes the appearance of clinical metastasis by 8 years after RP [21] and by 7 years after primary definitive RT [22].
The natural history of BCR and the risk of subsequent metastasis may be predicted by pre- and post-treatment clinical features (Table 1). These prognostic indicators are used as a means to assess the patient’s level of risk, and therefore, help physicians to determine whether to initiate early treatment or to adopt a strategy of active surveillance. Treatment decisions following BCR must balance the risk of metastatic disease or death with the impact of treatment, and necessitate involvement of a multi-disciplinary team, as well as informing the patient of the potential for a prolonged natural history of PSA-only recurrence [1]"
I had a radical prostatectomy followed by BCR treated with radiation to the prostate bed. I am now moving on to radiation to the pelvic lymph nodes and adding ADT after my second BCR and positive biopsy to iliac pelvic node. Because I only had radiation to the prostate bed after my first BCR I am now allowed to radiate the pelvic lymph nodes. This will be my second round of radiation.
The idea of a cure now is remote but I believe I am in good medical hands and have good research backing my decision. I think the radiation and ADT will at least knock this back for years and by then I am banking on an immunotherapy or other cure to be available.
I used the same approach and asked my RO what I could expect and he gave me three potential outcomes: cure, durable remission and recurrence with probabilities for each which I don’t remember. I’ve had no recurrence in lymph nodes but in bones. See my profile. And no toxicity. Let’s face it: once PCa is out of the barn it can reappear anywhere. Systemic tx will always be necessary but I’ve still radiated mets that can be treated safely and have had no recurrence in mets treated.
Great news. I too had the GA68 PSMA. Probably found my metastasis a year or so sooner. Hopefully it will become one of the standards soon?!. Best to you on the step of the journey.
Dr. Channing Paller is my MO. I think she came up under Dr. Antanorakis and may still be. I like her very much but have only heard good things about all of the docs at JH.
Some interesting thoughts running around, one being, do we have definitive research that shows how high a psa can be yet a cure still be had on re-occurance? If some prostate tissue is left in the bed, then does this not reflect in a subsequent psa score of being higher?
I am also wondering why you are waiting to start combo ADT and why you are not planning on doing IHT off the get go, thereby leaving you with a break to recover fro more rounds.
Lastly, I have never seen a cure once PC has spread, so likewise wonder about throwing more radiation at what will be an endless battle-but concur that one might smoke out some of the more aggressive pc cells in the process.
Live large and max out life on a daily basis! Get a bucket list made up to help you organize and plan the rest of your life so you get the highest quality from this day forward.
Starting on bicalutamide alone to prevent testosterone flare and adding lupron in 30 days. I believe this is common due to the flare.
Because I have N1 metastasis the thought is if the majority are contained in the pelvic area then the radiation will kill those and the ADT will clean up the micrometastases elsewhere. Combining systemic therapy with radiation to an expanded area gives me a good chance to kill or at least seriously hurt the cancer. Desired result of course is curative but I will be obviously happy with durable remission.
Long shot? Maybe, but for me it beats waiting for my PSA doubling time to increase to a "critical" level. Which is the direction I was given prior to the PSMA scan.
I’m on the same treatment plan and thinking. RP in 2015. (PSA 15) 32 lymph nodes removed 2 had PC. Rising PSA after 1 month so started Bicalutamide 150mg. Slow rise in PSA until May 2018 when it reached 0,5. Had PSMA scan that showed some PC in prostate bed and the back wall of the bladder.
Bicalutamide dosage increased to 300mg and recived 34 rounds of radiation treatment ending July 2018. Post PSA <0.06. (Current PSA feb. 2019 still <0.06)
Only radiation side effect is some fatigue.
I’m not in any way near cured but as you I believe in the studies that indicate that hitting the PC with Radiation therapy when the burden is low could have a positive effect in postponing PC progression.
Thanks for your story! Great result and same one I am looking for.
I believe in the future radiation to the prostate bed (post RP) and pelvic area coupled with ADT will be SOC after initial prostate therapy. This is what I would do if I had a second opportunity.
Looking forward to seeing your continued postponement.
Best of luck. I didn’t need the NIH scan , but sounds like we are now on similar treatment plans. I started Zytiga 2 months ago and it seems to be working so far with moderate increases in liver enzymes. 31/35 radiation treatments done....the persistent/recurrent PSA has been undetectable almost since starting.
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