Is pain after a Lutetium-177 infusion... - Advanced Prostate...

Advanced Prostate Cancer

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Is pain after a Lutetium-177 infusion a sign that it's working or not? I am getting mixed messages from doctors regarding this.

Davros123 profile image
13 Replies

This web page states no pain is a good sign.... ncbi.nlm.nih.gov/pmc/articl...

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Davros123 profile image
Davros123
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tango65 profile image
tango65

it seems that effective Lu 177 PSMA treatment is associated with improvement of pain severity.

ncbi.nlm.nih.gov/pubmed/297...

Davros123 profile image
Davros123 in reply totango65

thank you for the link... i appreciate it..... yours was the only reply directly related to Lut-177.... cheers

tom67inMA profile image
tom67inMA

I don't have any experience with Lu-177, but definitely had pain after each chemo infusion. For me, progress was measurable in increasing range of motion and less time spent laying down on the couch while pain stayed about the same.

Another interesting anecdote: Xgeva made my tooth hurt, and it turned out it was a botched root canal. Treatment can cause all sorts of aches and pains that aren't cancer related.

greatjohn profile image
greatjohn in reply totom67inMA

interesting that you mention Xgeva and bone pain. SINCE starting Xgeva...I have gotten the feeling that my lower ribs have been hit with a baseball bat. First shot ...it was sporadic, second shot more often....now after 4 shots...I feel it's pretty constant. I feel like they are "bruised". When I sit up I feel it...or breath deeply. I have NO mets in my ribs...so I have to assume it's the "bone pain" that they talk about from Xgeva. Have you NOT had any of these symptoms with it, Tom? Was just going to do a search on here (again) to see what people say about the bone pain it causes.

gJohn

greatjohn profile image
greatjohn in reply togreatjohn

p.s. I have noticed a couple of times that my teeth hurt....and I've always had perfect teeth...only one real cavity ever...and that was on a corner so the filling lasted about 10 years before it was finally crowned. I've never had teeth pain, teeth issues, teeth surgery (except crown)... in that regard, a lucky camper.

tom67inMA profile image
tom67inMA in reply togreatjohn

I do have three areas of cancer related pain, and they all correspond to areas that showed some activity in my latest bone scan. Both of my lower ribs hurt, especially the left one, when I lay on them wrong in bed. It is strongly suspected I broke that left rib prior to diagnosis when leaning over the edge of the bathtub to clean out a hair clog, with my weight resting on that rib on the edge of the tub. For all the running in the woods I've done over the years I break a bone cleaning out a hair clog?!? Sigh...

The other sore spot is my sacroiliac joint. That seems to be pinching my sciatic nerve, which can make sitting painful. The pinched nerve is probably what's causing pain in the outside of my right hip/thigh, where there's never been any significant cancer.

Lupron, Xgeva, and Docetaxel all seem to aggravate my pain. I'm now almost a month since my last shot, and the pain has dropped dramatically. I've also been taking Celebrex for its possible anti-cancer effects when combined with Xgeva, and that's been doing a great job on pain. Many days I'm pain free for 6-8 hours after taking my daily dose, depending on how much I'm doing to aggravate the sore spots. The nurse practitioner seemed surprised that I'm only taking celebrex for pain most days.

I see the stories here of men who can't breath without their ribs hurting, and am very thankful I'm not one of them. The worst I've had to deal with was not being able to bend over to spit my toothpaste into the sink because the sacroiliac pain was too bad. Happily that hasn't been a problem in months.

In mid July I'm due for my next Lupron and Xgeva shots, and am expecting an increase in pain for a few weeks after that.

greatjohn profile image
greatjohn in reply totom67inMA

Thanks for the clarifications.. I've just gotten on indomethacin....something that Nalakrats and a few are doing in here. It's a non steroidal anti inflammatory AND supposed to make XTANDI more effective.. it's helping with little joint pain I have.

J

tom67inMA profile image
tom67inMA in reply togreatjohn

Yeah, I've heard of using indomethacin for that too. I found this paper about how it might be doing that via inhibition of the AKR1C enzymes. Apparently Celebrex inhibits those enzymes as well, but this has been a very hard paper to wrap my head around:

pdfs.semanticscholar.org/f7...

j-o-h-n profile image
j-o-h-n in reply totom67inMA

BTW did you ever clear out the hair clog? If you did, how did you do it?

There's always one in the crowd....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/21/2019 12:26 PM DST

tom67inMA profile image
tom67inMA in reply toj-o-h-n

Yes, it did get cleared out. It was a simple matter of unscrewing the stopper and taking things apart and removing hair. It hasn't reclogged since my ponytail fell out during chemo :-P

j-o-h-n profile image
j-o-h-n in reply totom67inMA

Thanks for the info.... My ponytail is growing inside my skull....gives me a fuzzy outlook on life....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 06/21/2019 7:07 PM DST

Fairwind profile image
Fairwind

Where are you getting the Lu-177 treatment ?

Davros123 profile image
Davros123 in reply toFairwind

A trial at the RBWH in Brissie. We had our first infusion a week and a half ago...... it can be done privately at a cost of $10k per infusion for up to six. Luckily we were suitable for the trial and don't have to pay :).... I think the Brissie trial is full (emphasis on "think") and I also think there's one starting at Peter Mac in Melbourne soon... also St Vincent's has a Professor (a lady) who is involved..sorry, I can't remember her name :(

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