After 9 years, looking at salvage radiation

JNF, that's exactly what my Uro says--at my PSA, all the scans will likely show nothing. One wonders why bother to scan? The PSMA researchers tell me that they have only a 50% detection rate at my PSA level, and that's better than any of the currently approved scans. They even sent me a journal article.

I forgot to mention, besides the guy who wants to PSMA scan me, and the guy who doesn't want to PSMA scan me, there is also a guy who is very gungho about radiation, and thinks I should have done it years ago. So many opinions, no clear cut answer.

I started the "approved" scans today. CT scan today was negative. Next Thursday, Flouride PET scan.

DJBEARGUY,

On average IMRT for SRT goes any where from 34 up to 39 treatments, although I heard of one guy down at the hope lodge when I was there getting 44 but the total gy's were about the same 70+ on the gy's. Mayo Clinic does it 5 days a week unless holidays that's how mine turned into 8 weeks total. 9 weeks counting the synchronization and scan and blood work I had done. I had mine done late on Monday and early on Friday in case I wanted to go home on weekends. During the week I told them to fill me in wherever they needed too in case somebody else needed to change their treatment to a different time so every day was a little different would just check my phone in the morning to see what time I had to go kinda broke up the routine and it didn't matter as I was staying at the hope lodge for 7 of the 8 weeks. I'll just pass on this little bit of advice which we talk about a lot on the ADT & SRT thread the more you can exercise during treatment the better it will go for you the guys that were not able to exercise because of health issues had a lot harder time once they got 4 or 5 weeks into the treatment. And just like surgery make sure you are choosing a top notch radiation center, lots of things to screw up.

Larry

Another question--how long does a single radiation session take? 20 or 30 minutes? Including changing to a gown, drinking whatever you drink, and actual radiation beaming.

DJBG-

You are in luck. UCLA is having a sale on its Ga-68-PSMA-11 PET scan for biochemically recurrent men. They are doing a study to compare it to the Axumin scan. Your insurance should cover the Axumin scan, and they will give you the other one for free (normally $2650). They allow you to have the Axumin scan elsewhere, but you have to go to UCLA for the PSMA scan within 2 weeks (either before or after).

study coordinator : Jeannine Gartmann [email protected]

Just to be clear, I hope you understand that the purpose of the scans is to rule out that it has already distantly metastasized. If it is negative, you have a good chance that salvage radiation will be successful./pcnrv.blogspot.com/2017/12/use-of-mpmri-and-psma-petct-to-aid-in.html

Your PSA has reached a point where the odds are actually pretty good that the scan will detect something, unfortunately. It has also reached the point where the odds that salvage RT will be curative are severely diminished.

/pcnrv.blogspot.com/2016/12/pet-scans-for-prostate-cancer.html

/pcnrv.blogspot.com/2016/09/very-early-salvage-radiation-has-up-to.html

Phil and garyi, thanks for the info. Tall Allen, last week I had found exactly that UCLA information and have talked to Jeannine. However, Kaiser may or may not pay for the Axumin test--my Uro says it depends on how the fluoride PET scan comes out first (Thursday night). Right now I'm thinking I will do UCLA either way--but Jeannine says I do have to have my doctor approve it.

Regarding the PSA level--all I can say is Darn It. I got second (UCSF) and third (Stanford) opinions when I was at 0.3 and they agreed, no problem waiting until I hit 0.4. And then at 0.4 they though I might go back down to 0.3 on the next test. (My doubling time has been pretty slow.) Instead I went up. So, darn, darn, darn.

Here's why it's not a good idea to ask a urologist a question that a radiation oncologist should be answering. Urologists don't treat or follow patients who waited too long to get SRT, ROs do, tragically.

/pcnrv.blogspot.com/2017/03/conflicting-messages-after-surgery-for.html

Take your time getting assessments and finding a doctor in which you have both confidence and comfort.

Amazes me that many people will test drive a dozen cars to buy the one they will keep for three years yet only take one or two docs for a spin when making a lifetime purchase.

John4803, thanks for the interesting story of your experience. I hope things go well for you.

JNF, you raise a good point. But, in my situation at least, it's costing me hundreds just to talk to a few doctors (because some are out of plan), but I can test drive cars for free! Hoping it's worth the money.

Why wouldn't you if it's free? It may eliminate unnecessary radiation.

TallAllen said...
Why wouldn't you if it's free? It may eliminate unnecessary radiation.

UCLA requires that my Kaiser doctor approve the PSMA scan. So far, none of them will do so. Also, the PSMA results can only alter therapy if the Kaiser doctor agrees to use the information. So far, he says "it's not FDA approved" so he won't use it. Might be a legal thing?

That's why I hate HMOs. Choices are so limited. Now was this a radiation oncologist who said he would not alter your treatment if the PSMA scan detected a distant metastasis? He would go ahead an treat you knowing it wouldn't work? It sounds crazy to me.

DJBearGuy said...
Hi guys,

So my RO threw me an option that I wasn't expecting. Namely, hormones and radiation together. Well actually the hormones start first, both lupron and casodex. Radiation starts a little later but they overlap. So the choices are (i)radiation only, or (ii)hormones plus radiation. He said I could do either, but the hormone give a tiny bit more chance of eradicating the cancer, at the cost of more side effects.

I found the very long thread on ADT and SRT, but it's so long, I haven't figured out yet if it applies to me. Anyone care to weigh in? Especially if you have experience?

Thanks!

DJBG,

As I posted earlier in the thread, I finished Adjuvant RT 4/16/18. So, it was not Salvage. I went on Lupron/Casodex one week after my RALP, due to my path being upgraded from GS8 TO GS9. The RO I chose wanted me to do the Axumin scan before deciding on RT to see if I had mets and then he would recommend Chemo, instead. So, Axumin showed no mets and I went with RT.

My SE's, on RT, were mainly an extra urge to go and fluctuation from too soft of stools to slight constipation, when I took Imodium. The rectum nerves get over stimulated and so when any stool comes in at all, they want to fire and expel it, resulting in a lot of "small poops", as my RO called them. The Imodium helps relax them but in my case it tended to constipate me. My cardio was good before RT and, as a result, per the RO, I didn't suffer more SE's, ie. fatigue, painful urination, some blood in stools, etc. And I was totally continent going in and had a few spells of stress dribbles but they were temporary. Back to full continence now.

I try to jog a mile 5-7 days per week and lift heavy weights 3 times per week. This is to try to stave off muscle and bone wasting from the Lupron/Casodex. No SE's on AD, so far, only "warm vs. hot flashes", again, possibly due to my exercise, plus, I am married to a Dietitian, who keeps me on a good diet. I don't know what my T levels were before AD, but due to my age, they may have already been somewhat low (although I had a strong desire for sex and no ED), resulting in less SE's, possibly? Last T, about 2 months ago, was 20, which is about where you want to be at or even lower.

I will have my first PSA, since before my RALP, done next month just before my next 6 month Lupron injection and see what to do next.

I had IMRT/IGRT with 25 Tx of 45 Gy (8 minutes total time)and 12 Boosts, they called them, of 66 Gy (4 minutes total time). The 25 were of the Prostate Bed and the Pelvic and Periaortic Lymph Nodes, with the 12 only of the Bed, where I had gold markers (Fiducials) inserted.

So, don't know if it is right for you but I wanted to "KILL IT NOT JUST TREAT IT"!

My video of me ringing the Bell after my last treatment:

https://www.youtube.com/watch?v=OPlnDjrMTSA&t=4s

DJBearGuy said...
j4803,

Thanks very much for the detailed response. I also emailed some urologists and an oncologist.

My Axumin scan last week was also negative. The RO told me that he felt that a PSMA scan would be barely different if at all, for someone like me.

Was your Lupron/Casodex administered by the RO or by a regular oncologist?

It was actually administered by my Surgeon's nurse. He directed me to the RO, also, for RT. I am now going to use an MO, who is in the same building with the RO and mentored by him to do follow up and give me the next injection. The RO said he could do it, also, but I might as well have the MO's staff do it, in case, I need further care. Hope not but will have a better idea in a couple of weeks.

My RO feels RT works better with ADT and so does the MO. Both of these guys are up on the latest studies, Charted, Stampede, Latitude, etc., and publish, serve on committees, etc.