Hi dear friends...We are currently in a delemma....In our consult with Dr. Scholz, Rob was advised to get an Axumin scan; and then, later were told that the PSMA scan would be better and Dr. Scholz's office referred Rob to Sloan Kettering for consideration for one of their PSMA trials.
Since we live in Northern Virginia and the logistics of getting Rob to NYC for the scan would be most challenging, I began looking closer and up until last Friday, it appeared that Rob was going to get the scan in a trial at NIH....only to learn that he was denied because of the meds that he is on (Avodart, Zytiga and Firmagon.). I also checked with Johns Hopkins and found that the same is true with their PSMA trial. We are currently waiting to learn from Sloan whether Rob can be considered, but I was told that they have an increased number of applicants seeking the scan and that even if he qualifies, the PI may deem him not one of the best candidates and deny him participation.
I have asked Dr. Scholz assistant to send us orders for the Axumin and T-99 Bone Scans so that I can look into getting those in the event that Sloan doesn't come through or perhaps, simply instead to going to Sloan, since as I mentioned it would be extremely difficult to carry out. I am not even certain as to whether we can get Medicare coverage for the Axumin since I was told last December when we tried to get one at Georgetown that it would not.
( I should probably mention that Rob's PSA, as of two weeks ago, was 1.44....it has been rising about .2 every month for the last 5-6 months. Also, he was diagnosed in 2012, Gleason score of 9 and has had a prostectomy and radiation treatments....).
I emailed Dr. Scholz to ask if he felt that settling for the Axumin scan (assuming we can get it) would be unwise....but then, I don't know if we are going to really have a choice. I have not heard back from Dr. Scholz....so, I am reaching out to you for any advice....
Thank you!!!
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4luvofrob
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A PSMA scan is better than an Axumin scan. The result will be that you see more metastases with PSMA than with Axumin. Or a recurrence in the prostate bed.
The question is what treatment will result from these findings? If all you can do is continue with ADT then you do not need this imaging. If they find bone mets, you could add Abiraterone to the ADT. Also, some patients get these metastases radiated.
My partner just recently got a PSMA scan through a trial that Tall_Allen suggested (thanks, TA!). The catch is that scans have a harder time seeing PCa when PSA is low (<2.0), so the trials generally exclude you if you've had any ADT in the past three months because the ADT can shrink whatever PCa there and make it harder to find. Because of the firmagon and Zytiga, you may have a hard time getting into a trial. The exclusions are listed in clinicaltrials.gov.
Axumin scans are the next best thing but also have a harder time detecting PCa below 2.0. Since your PSA is low, it will also be limited in what it can detect. But Medicare will probably cover an Axumin scan, and they are very good, just not as good as the PSMA scans.
The question is what is the scan going to do for you? It could identify distant mets that you might be able to irradiate separately or treat systemically. Or it could give you peace of mind that there are no distant Mets and help you make decisions on treatment. Or it could convince you that there is PCa in the pelvic bed, so salvage radiation is necessary. At a minimum, it will help you make treatment decisions beyond ADT, and more info is probably better.
In our case (GS 4+5=9, 4 months post-RP, PSA 1.17), there was persistent PSA, and it was clear he was going to go on ADT. Before he went on ADT, he was able to get into a PSMA trial. The scan picked up PCa throughout the pelvic area and one lesion on his hip bone. That was helpful because the RO will probably be able to include that in the radiation field, and it does appear salvage radiation is necessary. So for us, the scan was helpful in treatment decisions. The Axumin scan was denied by insurance, but the trial is going to do one for comparison purposes today, so we'll find out soon if it picks up the same stuff. They suspect it will, though maybe not to the same level of detail.
Good luck in whatever you decide and throughout this journey. But don't feel bad if you have to "settle" for Axumin.
You mention he has had RT. Was that a full salvage treatment of 40 fractions ? This may limit further radiation somewhat...Have you considered chemo ? Nasty old stuff but it can be curative while scans are not...
I so very much appreciate all the responses I have received...to answer a couple of your questions...Dr. Scholz's proposal was for Rob to have the scans, consider Provenge. (possibly with Keytruda) , consider switching from Zytiga to Xtandi and consider metastasis-directed SBRT if scans show any abnormalities....
The radiation Rob received in 2014 was 9 weeks of daily DART radiation at Datolli in Sarasota; after which, his immune system was, as Dr. Myers said, like that of an AIDS patient..... and so, Dr. Myers put him on Leukine....and I think that Dr. Myers said that he could have no further radiation, but I'm not absolutely certain.
The Leukine brought Rob's immune system markers up into a low normal range...but a new doctor took him off the Leukine and the numbers went back down...I was able to get the doctor to put him back on the Leukine but it has not shown any benefit this time. He has been on 4 daily doses of BIRM for the last two months, which seems to be boosting his immune system...though so far, has not shown any affect on his PSA.
Again, thanks for all your input...and any further advice. Blessings on each of you and your families.
I had the same situation with aids levels of cb4 t-cells after Dattoli radiation treatment. The Myers Lukine didn't seem to do much for me other than generating some anti-immune response.
Sorry to be so slow in responding....went out to "look at cars" and ended up buying one...paperwork took forever!
Re: improvements in immune markers...
first month almost none, second month rather good:
CD3 absol. up from 564 to 804; CD4 absol. up from 275 to 360; CD8 absol. up from 286 to 427; CD56/CD16 absol. up from 276 to 361 .... % of the same were marginal....not sure about the absolutes vs. percentages....CD3% up from 62.7 to 65; CD4% down from 30.5% to 29%; CD8% up from 31.8 to 34; CD56/CD16% down from 30.7 to 29. I know there are others...but these are the ones I have followed since we were with Dr. Myers.
Re: doing both scans----Going to NYC would be a pretty hugs challenge...international travel is out of the question for us!
But thanks so much for you interest, support and advice!! Take very good care...b
Well, it was Nalakrats who advised me to get BIRM for Rob...and I know quite a lot of others on this site tout its good effects...especially, increased energy....Dr. Cevallos expects it to bring down Rob's PSA...and says that it will shrink mets...we'll see.....but we are happy that the immune markers improved and hope that continues .... No, we did not make any other changes.....
If you should decide to go for an Axumin scan some day, here's a handy Locator list for possible providers near you. You might spend some of this preliminary time checking them out, calling around, comparing prices, discussing insurance coverage with them, etc.
I agree with some of the sentiments expressed about deferring tests or scans that probably won't change one's treatment decisions.
(I'd also guess that Provenge might also be more effective if used earlier, rather than later, and while both PSA and tumor burdens are relatively lower. As you know, both Provenge and Xtandi are very expensive. Looking into insurance Prior Approvals, coverage, and co-pay details ahead of time could be something to consider, too, before changing treatment(s).)
IMO, with a PSA less than 2 he should get s Ga 68 PSMA. UCLA does the study in patients with PSA 0.2 or higher. They charge $ 2,870. Dr. Scholz will know who to contact at UCLA to get the study done if you decide to go this way.
First of all, why are you coming all the way to LA to see Scholz when you can see one of the best medical oncologists in the world at Johns Hopkins - Emmanuel Antonarakis? The DCFPyL PET scan was developed at Johns Hopkins - if they think he needs one, they will give it to him. They are also on the leading edge of pathological, IHC, and genomic testing - much more useful than those fairly useless CgA tests.
Secondly, I just reviewed your history, and don't understand exactly what treatment decision you need the PET scan (Axumin or PSMA based) to make. Those PET scans are very sensitive to PSA, and long-term ADT lowers their sensitivity (after an initial flare). If the purpose is to decide whether it is time to switch therapies (e.g., Zytiga no longer working), then all he needs is a bone/CT scan, or, with his PSADT, it can be done based on just that.
As far as I can tell from your post, he has no bone scan-detectable tumors and is castration-resistant - he seems to be a good candidate for Erleada. Perhaps insurance refused that because he's been pre-treated with Zytiga?
WOW!!! You all seem to know so much more than even very highly recommended doctors!!! We did not go to CA to see Dr. Scholz; we have met with him one time, by a face to face one hour phone consult....
Rob and I actually met with Dr. Antonarakis before he began to see Dr. Dawson at Geogetown. At the meeting with Dr. Antonarakis, the doctor said that he thought Rob did not need him at that point and should find a doctor closer to our home....which is why we are with Dr. Dawson, who was also one of the recommendations given us by Dr. Myers when he retired. Dr. Antonarakis did say that he would be available in the future should Rob need him....Perhaps you are right Tall Allen; maybe we should go back to him.
No one has mentioned Erleada to us...I am not familiar with it....but I will bring it up when we meet with Dr. Dawson on the 25th.....Re: the recommendation for a bone/CT scan, I was under the impression that they would not be strong enough to reveal any but large metastases....I am hoping to find whatever it is before it becomes large....
Again...MANY THANKS to ALL of you ... may God bless and keep you. b
"I am hoping to find whatever it is before it becomes large...."
Why? You didn't answer my question about what treatment decision you are trying to make. It's an important question. Once you can articulate an answer, it will lead you in the direction you need to take.
Hi Tall Allen...thank you for sticking with me...I did actually try to respond to your questions ... just did not submit my responses correctly...here is what I said (the last
portion is added per what I did/learned today.......
WOW!!! You all seem to know so much more than even very highly recommended doctors!!! We did not go to CA to see Dr. Scholz; we have met with him one time, by a face to face one hour phone consult....
Dr. Scholz's proposal was for Rob to have the scans, consider Provenge. (possibly with Keytruda) , consider switching from Zytiga to Xtandi and consider metastasis-directed SBRT if scans show any abnormalities....
Rob and I actually met with Dr. Antonarakis before he began to see Dr. Dawson at Geogetown. At the meeting with Dr. Antonarakis, the doctor said that he thought Rob did not need him at that point and should find a doctor closer to our home....which is why we are with Dr. Dawson, who was also one of the recommendations given us by Dr. Myers when he retired. Dr. Antonarakis did say that he would be available in the future should Rob need him....Perhaps you are right Tall Allen; maybe we should go back to him.....{I actually discovered when I called to make the appointment that it
was Dr. Eisenberger, not Dr. Antonarakis, that we saw....it would take 2 weeks to see if we can make a switch and then, we were not promised we would be able to get an appointment with Dr. A, so I went ahead and make
an appointment with Dr. E on July 3rd.} Again, I am so grateful to have you share your knowledge with me!!! Blessings, b
So, your answer to the treatment decision is: "Dr. Scholz's proposal was for Rob to have the scans, consider Provenge. (possibly with Keytruda) , consider switching from Zytiga to Xtandi and consider metastasis-directed SBRT if scans show any abnormalities...."
1. Provenge - it is true that he will only be able to get Provenge if there are detectable metastases. However, most insurance will only approve if the mets are detectable on a bone scan/CT (which is how Provenge was tested). I suspect that immunotherapies may be more successful if used later (but not too late):
2. Switching from Zytiga to Xtandi - metastatic progression in addition to PSA progression while on Zytiga is certainly reason to switch. However, Rob did not have a baseline PET scan, so how could you know if anything a PET scan picks up now was always there or appeared recently? As a first "switch," he might try switching from prednisone to dexamethasone. Discuss this with his MO:
3.consider metastasis-directed SBRT - certainly a possibility, but you should be aware that there is no evidence that this accomplishes anything. Phuoc Tran at JH has a randomized clinical trial about this, but he requires that at least one met be detectable on a bone scan/CT.
So, it seems that there is no compelling reason to pay out of pocket for a PET scan now.
I FINALLY found my thread and your response....THANKS!!!
Re: Provenge....may I ask what you mean when you say it is more successful when used later....what would be that later point?
Re: Dexamethasone....I brought it up to Dr. Dawson....she did not seem to know much about it....and said that if that were what was intended to be used with Zytiga, it would be the instruction...???!!! Dr. Scholz felt that it was too late to try to extend Zytiga with Dexamethasone....I can certainly bring it up once again when we meet with Dr. Eisenberger at Johns Hopkins (do you know of him?).
Re: Possible Metastases and past scans....Rob last had a CT scan and bone scan in May, 2018....They were negative....I slowed Dr. Dawson down on running scans after watching a video by Dr. Scholz in which he talked about the futility of these scans at low PSA's....but as Rob's PSA began to rise, it seemed like a good idea to find out what is going on and try to do something before it gets out of hand....and so, there were two questions: what scan and what to do if anything shows up....
I arranged the consult with Dr. Scholz because I had heard that he was similar to Dr. Snuffy Myers in his approach (Dr. Myers was Rob's doctor until he retired)...and because I liked what I saw of him on the video.
I am hoping that our consult with Dr. Eisenberger may bring everything into focus....
and get us on to a sound track....I wish someone like you could go to the appointment with us!!!
My goal in all of this is and has been to prevent Rob's cancer from getting to the point that he will be suffering as so many do....I know that he will not live forever....Neither will I....and while I do not want to lose him prematurely...he is and has been the love of my life for over 50 years....I would let him go tonight, if it would prevent his suffering.....
Thank you from the bottom of my heart for all the time, compassion and knowledge you have shared with me .... and that you give to so many on this site.
I have found when talking to doctors, it helps to email the peer-reviewed journal study with a note that you would like to discuss at your next meeting. You'll get a more thoughtful reply than if you just bring it up verbally at a meeting.
LOL@Scholz and Myers are similar - I doubt either would agree, although there is mutual respect. I've seen them go at it. It's just my impression, but I think Scholz thinks Myers often flies by the seat of his pants, but has a lot of patient experience to draw from. They are similar in that they market directly to patients, and have (had) a private business.
I think that your idea of emailing a copy of the study to the doctor is a good one....
I have taken copies with me, but after the doctor's dismissal, lost the nerve to present it... Your impressions of Snuffy and Dr. Scholz are interesting....I'm not sure how much further we will go with Dr. Scholz....we really need someone close by....
I emailed him a question last week, but have not received a reply....when I asked one of his assistants if I could expect a reply, he said, "it depends on how long a response is needed and how busy he is." Sleep well!
Thanks, as always, Nalakrats...I had forgotten about PCRI...I will reach out to them, if we run into problems getting Medicare approval....And Tall Allen, I have called to get an appointment with Dr. Antonarakis...have to call back in the am....
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PSMA scan prep?
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