Hi
Just wondering if anyone else has has experienced a rise in PSA after the first treatment.
My husband had his first Lu177 PSMA treatment in Germany 6 weeks ago and had his bloods taken yesterday with our local GP. We are disappointed that his PSA has increased from 45 to 50, we had hoped to see a fall. Has anyone else experienced this but gone on to see a reduction?
PSMA scan in January
Regards Jan
I completed the trial. After my first of two treatments my PSA rose about 100 points. After the second treatment it dropped about 100 points and is up to 650 after a couple of months. I got nothing out of that trial. I'm in the process of giving actinium a shot...an alpha particle in the same basic trial. If that doesn't work I've had enough.
First time, I've read someone on this board say "if that doesn't work I've had enough".
Absolutely.
Makes much more sense than "never give up, keep fighting the good fight".
Hi
Thank you for replying.
Are you having many side effects with the Actinium? I have heard that the side effects can be quite bad
SHE IS , BUT DON'T YOU!
youtube.com/watch?v=jEofC4N...
Good Luck, Good Health and Good Humor.
j-o-h-n Wednesday 12/05/2018 7:15 PM EST
Jan,
After my first LU177 the first week my PSA dropped but the second week it rose to almost my starting PSA but then the 3rd it dropped again significantly. After 6 weeks my PSA dropped from 110 to 37. I have received my second injection but they will not be testing my PSA for 6 weeks. My bone scans after 6 weeks looked very similar to before treatment but this is expected as it will take time for the bones recover.
This is a very good treatment just needs time to work.
thank you
Hi, Jan. Here is one possible explanation, based on my husband's experience of treatment in Germany (though he had both Lu-177 and Ac-225).
Initial PSA in Germany before treatment #1 was 221.
PSA 2 weeks after treatment: 209
PSA 6 weeks after treatment: 132
PSA 7 weeks after treatment, just before treatment cycle #: 176 !!!
Here's the explanation we received, realizing that there could be misunderstandings due to language differences and any misinterpretations (which would be our own).
Some of the cancer cells detect the presence of the radiation and "go asleep."
The radiation has to decay through several half-lives before the cells detect no more appreciable radiation and "wake up."* This "step up" in PSA is something they often see with this treatment.
* The half-life for Lu-177 is just under 7 days (for Ac-225, it's 10). So at the end of the first week, it has decayed by half; at the second week, half of that half and so on.
My husband had his second treatment just over 2 weeks ago. His most recent PSA is 119. Normally, we'd be elated. Now, however, we are a bit more cautious. As JackPine says, this is a long-term treatment.
Now I need to go back to the articles we'd read earlier to see if this step-up pattern has been reported, but we just did not know enough on first reading to take it in properly.
We are with you about the uncertainty and, at times, frustration: specific treatment from one set of docs followed by regular care by another doctor who, no matter how well-read and smart s/he is, does not have the background or experience with the treatment. We are all on this journey together, learning as we go.
Thank you so much it is great to hear from someone going through the same treatment.
Which hospital is your husband attending?
Has he had any bad side effects? I have read that patients on Ac-225 can experience some nasty side effects, I would be interested to know as this may be our next treatment if the Lu 177 fails.
What country are you from?
We live in the US. My husband did not qualify for the Lu-177 trials because of not having had chemo. Our oncologist strongly suggested Ac-225 because of the potential for less damage to non-targeted tissues. But then when we got to Germany (Heidelberg), he got some Lu-177 anyway!
And, yes, for him the xerostomia (damage to salivary glands) side effects have been significant. At our most recent visit, the docs said it could take as long as a year for things to improve. Right now he's using a variety of sprays and lozenges + keeping a water bottle at his side at all times to cope. It does make eating -- and enjoying eating -- tough.
We knew this was a potential down side. There are trade-offs for every treatment. The option for him was surgery (to remove the lesions from the vertebrae); the potential down-sides (and recovery time) seemed worse. Thus, given what we knew at the time, Ac-225 was the choice.
They sometimes use Lu177 and Ac225 combined
That's what they do in Heidelberg. I suffered quite badly after a few days.. for two weeks. Extreme fatigue and daily nauea.. intemmitent. I can't say I feel any better yet after four weeks. Testing PSA in two weeks to see if any improvement.
Hi Nalakrats...can it work even if your psa is really high? I live in CT...do you know of anyone in the NY-New England area that does this treatment.
My brother had two injections of Lu177 in Sydney. PSA went up after first treatment. Only started to come down from about 25 about two weeks after 2nd treatment. after some months was below 1. Continued enzalutamide until this stage. All but one bone mets disappeared. Didn't do SBRT on remaining rib spot which as the author of a couple of PCa books, surprised me.
Sadly after 18 months PSA started rising to 9 and now 18 with many mets returning. Will have third injection next week and will resume enzalutamide.
Thank you for the info it is most helpful. Can I ask how advanced was your brothers cancer and how far had it spread, was it just to the bones?
Am I correct in thinking that his third treatment is around 18 months after his first?
Jan
Hi Jan. My brother has Stage 4 PCa. It is 18 months since he had his second Lu177 injection. The PET scan saw the PCa in his bones AND lymph glands in groin area. A new PSA test this week shows continued rapid rise in his PSA. Lupron having no impact. He has started Enzalutamide again this week and has a third injection this Friday.
Interested in any feedback from men who have other treatment options that are holding the PCa at bay.
So are you thinking that if they had done radiation to the rib met it would have improved outcome? I agree.
This post has such pertinent information for those of us searching for a next treatment option. I appreciate y’all keeping us informed.
I think you're talking about Dr. Tagawa...he's my doctor in NYC. I was referring to BAT.
Doctor Says Its Time for LU177
