New Scans after LU177 treatment

[Jackpine]

Had first scans after finishing LU177 PSMA in May. My PSA has risen to 4.6 from a low of 0.4 during the trial. Scan showed a large angry looking lesion on my 5th left rib and smaller spot on my left hip. Started 5 sessions of SBRT to see if we can slow down/stop the progression.

The game of whack-a-mo continues!

[Grumpyswife]

Hi, Did you have the choline Mayo scan? You mentioned earlier that you would try to find a PSMA scan in MN. Any luck with that? They are doing them in Iowa but I am having trouble getting in there.

[Jackpine in reply to Grumpyswife]

MJ,

I did do the choline PET. At the Mayo. I have not yet found a PSMA scan yet in Minnesota.

[Grumpyswife in reply to Jackpine]

I haven’t seen PSMA here either. We are in MN for the summer and only saw Iowa location.

[whatsinaname]

Barely 3 months after 6 infusions of Lu-177 and your PSA has gone up from 0.4 to 4.6, that is 11.5 times. Also, new lesions in two places. And, now you have started SBRT.

How would you categorize this therapy ---Lu-177 ?? Of some use or pretty much useless ??

Also, do you not have any salivary gland problem at all ?? Thanks and all the best.

[tango65]

Best of luck and keep us informed.

[taylor123]

Sorry it never worked for you.

I always thought you need a PSMA positive scan before trying Lu177 however?

[j-o-h-n]

Holey Moley you still gotta play ole Whack-a-Moley....... Damnit It's Shitoley.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/18/2019 10:00 PM DST

[Jackpine in reply to j-o-h-n]

I like it!!

[Grumpyswife]

Does that mean it never worked? It depends how you look at it. You previously had chemo so that puts you into a supposedly more difficult category. It bought you several months time with no side effects which is better then not having it. Did you miss out on other treatments in order to participate? Probably not. Did you have to travel overseas and spend thousands on questionable treatment? No. What other options did you have? Plus it was mostly cost covered and you were/are closely monitored.

[whatsinaname in reply to Grumpyswife]

I would hardly say going to Germany or Australia would involve getting "questionable treatment". The USA, as of today, offers ONLY trials, no treatment at all, even if you are ready to pay for it.

The point is : Is this treatment worth it ?? How long does it extend your life ?? By a few months ?? And, even during that period, you have xerostomia (which is awful) and severe weakness. I am talking about the majority, not GP24 or tango65, who both were lucky enough to start the treatment before they took ADT or chemo.

I am talking from experience. Of course, treatments work differently on different people.

What other options ?? If no viable options presented themselves, then go off all treatments. Enjoy the last 6 months of your life with your families and kids. Travel if you can (with painkillers). Otherwise, relax at home, read, listen to good music, eat everything you deprived yourself off earlier

[Jackpine in reply to whatsinaname]

Whatsinaname,

I certainly understand your comments and you are correct that the treatment works differently for each of us. In my case I had limited options given how my disease was progressing. I tolerated the treatment well ( actually feel the best I have since getting this disease). I didn’t get the dry mouth which was awesome. At least now I only have two Mets vs. hundreds and quality of life if very good.

I hope this treatment can lead to new treatments that work longer and are better for everyone. I know I have a reason to keep going as I have to walk my daughter down the aisle in another 14 months.

Hang tough!!

[whatsinaname in reply to Jackpine]

Good for you, Jackpine. If everything is going well for you and your quality of life is excellent, then there is really nothing further to say. Yes, I believe that improvements on this treatment are possible and could really help PC patients who take it before going down the chemo/ADT road.

Cheers, Jackpine.

[jdm3 in reply to whatsinaname]

In transit at the moment so can't find the studies or previous posts, but I recall that some ADT increased PSMA expression and was recommended for the PSMA-specific radioligand therapy. I don't know about the chemo.

[whatsinaname in reply to jdm3]

Yes, I remember someone saying here that Dr Baum of Bad Berka in Germany had said that Abiraterone was synergistic with Lu-177. And, if not actually synergystic, it certainly was not harmful if combined with Lu-177.

Thanks, jdm3.

[tallguy2]

Best wishes, what's next for you given the significant increase in PSA?

[Jackpine in reply to tallguy2]

Tallguy2,

I’ve started SBRT on the 2 Mets so that should take care of them. Overall I feel good and still able to golf 18 holes several times a week. We’ll see what’s next once we know how the SBRT works.

[tallguy2 in reply to Jackpine]

Sounds good. Best wishes!

[Claud68]

Best whishes for you, Jackpine!

[u302000]

Jackpine,

Would you consider sharing your experience leading up to the LU-177 treatment?

healthunlocked.com/advanced...

Cheers,

Buddy