I have a quick question on Ga-68 availability in the US Medicare approved. I am being told I can only get them at UCLA and USCF. I have a rapidly rising PSA. I had an Auxim scan 1year ago. Why, I’m not sure. PSA was 1.0 then. I was under the impression that an Auxim scan was pretty much useless for anything below 2.0.
I would like to get the Pylarify (sp) psma but my oncologist is saying it won’t be available for many months.
Thanks,
Alan
It is FDA approved at UCLA and UCSF only, but I have not yet heard it is Medicare approved. There are some clinical trials at other institutions. The out-of-pocket cost is about $3000.
Pylarify is already available in a few places (tell your oncologist):
pylarify.com/ordering-and-r...
Thank you Sir,I know that pylarify is available in Covington, La north of New Orleans. I have a request in to that company about the costs. From what I remember reading here , probably from one of your posts that are backed up by valid data, the pylarify is significantly better at detecting small Mets. I believe that pylarify can be accurate to 2cm whereas Ga-68 is only accurate above about 10cm. These values and numbers are just coming from memory which has shown to not very good anymore.
Thank you Tall_Allen
Alan
I think you mean mm, not cm. No PET scan is accurate to 2 mm. There are no PET/CT scans that are good below 5 mm. It's a limitation of PET/CT and has nothing to do with the radioindicator. The Combidex MRI in the Netherlands only (read by Jelle Berentz) may be able to find lymph node metastases as small as 2 mm.
The other thing that qualifies accuracy is how good the radiologist is. I know the radiologists at UCLA and UCSF are excellent. What do you know about the radiologist in Covington, Louisiana? Interobserver variability has to be taken into account too.
Thanks Tall_Allen,I stand corrected. I haven't begun looking for the data. I was just going by memory which is suspect to say the least.
Thanks for all you do for this forum.
Alan
I had a PSMA Pet Scan at UCLA in March. It was 100% covered by my medicare advantage plan. $40 copay.
Great! Yes I've heard a few private plans are covering it, even if Medicare isn't. I'm told that if Medicare decides to approve it (which is likely), they will backdate approval to the time of FDA approval. But please check with CMS that this is accurate.
MD Anderson in Houston should have the capability within the next week or two.
Thanks JamesThat is good news. I have been a patient at MD Anderson. I went for a second opinion at the behest of my wife. My oncologist, Dr. Oliver Sartor is well regarded. As a matter of fact when I met with the PC oncologist at MD Anderson, a Dr. Tu, his question to me was why was I here as Dr. Sartor was my oncologist. They think highly of him. Anyway, I have had an undetectable psa for the last 6 years. T level had been around 80-90 each month. Lupron/sodium bicalutimide hadn't been taken for 3 years. But for some reason my T dropped to11 ng/dl for 16 straight months. I was not myself. Dr. Sartor and his staff had seen my decline and said I had absolutely zero quality of life. He offered me to begin taking Angrogel daily. I was the proverbial frog in the water getting hotter and didn't realize it. I began the T supplementation as my testes and adrenal glands had apparently given up. Dr. Sartor expected the spa would begin rising but hopefully very slowly. He gave me the choice: try it to get some QOL in exchange for shortened lifespan possibly or live with no interest, ambition, etc. He was absolutely correct. However MD Anderson said they thought it was medical malpractice on Dr. Sartors part. Just can't win for losing, I guess.
Thanks James
I just did a PMSA at University of Michigan -Michigan Medicine Nuclear Medicine call 734 647 9115
Was it part of a trial? Or could you share the cost to you, please
Curious what the Androgel did to your T numbers. Are you still on it? What is your PSA now? What is Dr. Sartor’s asvice? There’s some people on here that do a rotating form of treatment-testosterone injections then AST in alternating cycles. Its controversial of course
Hi,The T numbers go all over the place. Typically they are around 280 but have been as high as 1190 ng/dl on 4 occasions. Same stuff applied same way daily. I can certainly tell when it is low and when it is very high. Still on it. I keep asking Dr.Sartor if I should stop the Androgel each time the PSA has risen and he just says “no”. No idea how long he wants to continue this. I’m ready to stop if no other reason than to see if I’m still not castrate resistant. This isn’t any sort of BAT type protocol. It began to give me some quality of life.
Quite conflicted here. My urologist who scrapes out bladder cancer every 3 months is apoplectic that I am still taking it. I truly don’t know what Dr. Sartor’s plan is. He is very reluctant to discuss it. He just says “we need to find out we’re it is”.
agyoung wrote --- " ... T numbers go all over the place. Typically they are around 280 but have been as high as 1190 ng/dl on 4 occasions. Same stuff applied same way daily. I can certainly tell when it is low and when it is very high.... "
I have been on Cypionate biweekly injections since Jan 2016 with my "T" range generally 500/600ng/dL at the end of 2 weeks then 1,600+ng/dL after injection and I actually feel nothing following injection BUT can notice a decline if I exercise heavily as the end of 2 weeks approaches.
Everybody is different.
Wow you feel a decline when hitting 500. I have been pushing for almost 2 years with a T less than 1. I am not sure I will ever get back to 500 but I keep imagining I will feel like superman.
Hello Treedown. Typically my monthly T level is around 160-180 ng/dl. That is usually the case. There are times when it exceeds 1000 ng/dl. No rhyme or reason. Same methodology daily. It is my understanding that Androgel 1.62% applied daily once to each shoulder won’t ever get the T above about 400. Why mine gets over 1000 mg/dl about every 3 months is perplexing. Are my testes becoming active and or adrenal gland during these periods? No idea. But something is amok. It may be the reliability of the test itself. But I was somewhat productive when the level was 80-90 mg/dl. Still functional as an airline captain/ check airman on wide body Boeing’s. But when it dropped to 11 for months, I was useless. It was an effort to do basic things. It is quite startling to me to be able to tell and feel the difference. If above about 400 ng/dl I am extremely confident in my abilities and able to function very well. 200 or so makes me much less active and interested in anything. Quite amazing difference. The quality of life differs monthly and in my case is quite drastic.Some people don’t suffer the low or no T symptoms as much as others. In my case how you are able to function with a T of 1 mg/dl is unimaginable for me. Everyone is different though.
Thanks for your reply.
Alan
agyoung wrote --- " ... Are my testes becoming active and or adrenal gland during these periods? No idea.... "
NO CHANCE of activity for me since the THE boys have been gone for 6+ years and adrenals are zeroed out. I'm thinking that since my plateau is so high now it is similar to before I was castrated.
Told the urologist on Monday I wanted them gone, had my Pre-Op a few hours later(that's when they got my ECG and heart rate was 32bpm when the nurse turned on the unit after attaching the tabs), then Tuesday AM I bicycled to the ride to see my A+ Group buddies and told them what was happening in a few hours and mentioned the "The BOYS will be gone and so too my strength and speed." A few hours later they were gone and that night I had my first reaction.
Effects disappeared over time as did my speed but still had no issues with the length of marathons, half marathons, 200 mile bike rides ONLY recovery sucked. Started the T injections and felt a boost but over the years it is now nothing and recovery is much-MUCH slower.
Purposely skipped an injection a couple of times - had blood work done -- and was into the 20's before the next injection and feeling like a washed up wuss.
Hoping my *artificial "T" is like a Stealth Bomber to any GL10 cells.*
p.s. treedown -- hoping for an OVERNIGHT 100+ miler 👍👍 this weekend
I think some folks tolerate the loss of T much better than others. Exercise is extremely important. I try to utilize my upper body as much as possible but I have lymphedema in legs that make even walking difficult at times. I have been through the gamut of options available to treat it but nothing is working. John’s Hopkins has a program that is the transplanting of lymph nodes unaffected by radiation but I didn’t qualify because the bulk of the transplanted nodes come from the abdomen, which in my case, was radiated. Keep up the riding! Great job.
Alan
Lymphedema reads like it is suckyyyy so it's good to read that you are keeping active as best as possible. 👍👍
Are you doing any ADT Lupron or just straight T
Nothing, just 1ml of Cypionate 200mg/ml biweekly.
Thanks. MY OC and have discussed this to do after twelve months has has passed after my AC-225 and LU-177.
Hope all goes well for you.
Are you doing any ADT at the same time or how if so and none if so . Also, where are you doing this? Thank you.
My Orchiectomy is all I need for ADT -- ;0) -- If things go south I'll just stop the "T" and proceed from there. Get 3 months at a time refill from CVS via Dr. script.
Thanks. Good luck.
There are two trials at Stanford ... I just took part in one. I was part of the DCFPyL study (which, as I understand, is the same thing as Pylarify); my cost was zero:
clinicaltrials.gov/ct2/show...
The other trial is a two-scan study, one day you get Ga68, then at least 24 hours later you get NeoBomb:
clinicaltrials.gov/ct2/show...
They told me I would be paid $250 to participate in that one. That’s consistent with a Ga68 trial I was part of in January 2018, again at Stanford - they paid me $250.
I ruled out the UCLA scan b/c the last I checked, they told me it was $3300 out of pocket with no insight into just when Medicare might cover Ga68, let alone if they would reimburse me if-when (I assume when) that happens.
Hi Lokibear - Did they tell you whether the scans would be professionally reviewed and used for treatment strategies?
The reason I ask is that in 2018 I participated in a Stanford Ga68 trial scan and everything was "clear", but then in reality it wasn't...and I may need another one soon.
Here's more contact - 52 yo and at initial dx of Gleason 4+3, PSA 11, and clean CT. Subsequent RALP was T2c 0/15 lymph nodes, no margins/invasion, but a few weeks after surgery my PSA was still 4.0. I then had an Axumin scan that detected 2 lymph nodes so went through radiation and 18 month ADT + Zytiga.
Undetectable since starting ADT at the end of 2018...but last week it came back as 0.15. Meeting with Stanford MO today to discuss next steps, but some have suggested PET scan to see if we can see where it is coming from and still try to regionally treat it.
Anyway, I always felt like the R&D scan missed things that could have been known 4 years ago.
Hi PGDuan,
Their study-protocol radiologist was to review it and read that report to my oncologist, which I hope happens today. Then my MO and I will discuss next steps and determine a treatment plan.
Though I’m not an expert, and my “instincts” are frequently misguided, my knee-jerk is if a PSMA scan came back clear but I still had a rising PSA, I’d look for discordance via an FDG or Axumin scan instead (FDG b/c many trials and for-profit clinics want the comparison before theranostics treatment).
My notes tells me the combo trial of Ga68 + NeoBomb does target two different receptors, PSMA and a “gastrin-releasing peptide receptor”. This was discussed as giving us different angles to see things that might be missed by one or the other scan.
Given less than 100% sensitivity, it would seem possible that some scans will miss some things, and apparently sometimes will miss everything. Sorry it went that way for you.
I thank everyone who responded. In my haste I neglected to look for similar posts. I have found them. I'm sorry for asking a repeat question, but I thank all of those that replied.,Alan
Anomalous,I follow you in thinking I’m blaming Dr. Sartor. In no way would I blame him for anything. He gave me the choice to do so and after several weeks of deliberation I agreed. This is all on me. I’m just disappointed because I don’t know what the game plan is. I have asked Dr. Sartor several times as the PSA has risen should I stop? His answer is no. I have the free will to quit any time. I just have concerns and questions that he may not be able to answer. His emphatic “no” indicates he has some method. I just follow his advice.
As far as Dr. Sartor, I went to MD Anderson several years ago just for a second opinion at the behest of my wife. When we first met with the oncologist, Dr. Tu, he asked why was I here when I was being cared for by Dr. Sartor? They have the utmost respect for him.
I think you might be a little unfair in inferring I am blaming Dr. Sartor at al.
Alan
I never said I didn't want to stop. Im not sure how you come to the conclusion that I am enjoying his prescription. You have no idea of my circumstances. I apologize for seeming to be curt but I think you are drawing your own conclusions based on what I have said and your conclusions are incorrect. To be fair there are a lot of things in my condition that Dr. Sartor feels a reason to continue. I was given 18-24 months to live when first diagnosed. Surgery nor radiation was not an option as they considered the condition too far advanced. 7 of the 12f biopsy needles were bent. Urologist had never seen even one bent needle in 36 years of practice. Sent me home to get affairs in order. I contacted a very well known robotic surgeon who after a DRI decided to have a go of it. It was more to see what this thing was as it was so massive and so very dense. Upon removal it awas the size of a large grapefruit and the consistency, as reported in the after action report that it was 99% density of granite. Lymph nodes, seminal vesicles, etc. No mets indicated on a CT scan nor bone scan. Dr. Benjamin Lee, the surgeon jokes that my prostate is encased in wax at the Tulane Cancer Center as an extreme example of advanced aggressive (5+4 in 10 of the 12 cores, 4+5 in the other two). So, I guess that is my contribution to society. It did curtail my career as an airline captain quite early. I was able to get my 1st class FAA medical back after a very lengthy and expensive ordeal. It was conditional for 1 year and if there were any increase in PSA it would be voided. Unfortunately the PSA continued to rise slowly even on Lupron, sodium bicalutimide, and 39 radiation treatments. Not that this has anything to do with your question directly, but I have been told by Dr. Sartor that I am one of the most unusual cases he has seen. Again, I don't want to come off as being curt but drawing a conclusion that I might be blaming anyone is ludicrous and Im sorry but I find it unnecessary.
Thanks for the advice you have offered.
Alan
I had a PSMA scan done at UCLA a few weeks ago. I was able to give it covered by United healthcare. They quoted $3300 if out of pocket. I had to wait 8 weeks
PSMA 68 Galleon Pet Ct Scan
Ga-68 PSMA-PET scan result vs Biopsy
CT Scan
