bone pain after pluvicto

[JoeyDad]

I had my 5th infusion of Pluvicto this past Friday. I had had tingling (like pins and needles in my shoulder and leg. Now, post pluvicto, I have terrible pain in my femur and pelvic area. HAS THIS HAPPENED TO ANY OF YOU GUYS??? Hurts!!!!

[MyDad76]

Did you have scans planned to check on disease status? Please be persistent with your GP / oncologist: they must fine the right combo of drugs to manage pain effectivelly.

[db1966]

yes. Immense pain to the point we had to stop treatment after 3. Scans showed very quick progression during Pluvicto treatment. Something isn’t right here. Still have the pain now. There’s a few fellow Pluvicto patients in similar situations.

[Fightinghard in reply to db1966]

yes

Had to stop after 3rd treatment due to extreem bone pain. Mo gave me steroid to help calm the inflamation

[MyDad76]

From what I read and learned on this site, FDG pet scan should also be done with PSMA scan to determine best candidates for Pluvicto treatment. It should become a standard!

prostatecancer.news/2019/12...

[JoeyDad]

thanks for the response, guys. Being told I have a fracture in my acetabulum. Now using walker. This changes my life.

[garyjp9 in reply to JoeyDad]

I am sorry to hear this. Can they do a hip replacement, which is becoming a very efficient surgery and can bring great relief to certain kinds of hip pain?

[JoeyDad in reply to garyjp9]

Hip replacement surgery is ON for tomorrow.

[garyjp9 in reply to JoeyDad]

Good luck. Will be thinking of you!

[Agent8]

Eligard/lupron, after 2nd injection in derriere. Severe pain from waist down for 2+ months. The poison from hell caused spinal compression, bone/joint pain to bottom of feet. Stabbing ice pick type pain (especially in groin). Not for me! Monitoring PSA each 6 months. At .02 currently. Diagnosis was 110 stage 3, aggressive. 25 radiation treatments . Gleason 9. Caught it just in time before metastasis occurred. It was to late for surgery. So far, doing well. Knock on wood. Oh wait, that's gone😪. 64 years old, choosing life.

[Marit85]

My dad had his second infusion three weeks ago, and has deteriorated rapidly since. His psa initially went down from 49 to 27, but then went up to 40 (at his latest blood work two weeks ago). We don’t know what to make of it, but the bone pain is intense. He was hiking and living a normal life only weeks ago, and now he gets exhausted after only a ten minutes walk. Our gut feeling is that pluvicto is not working. From what we have read pain should improve during treatment, not get significantly worse. What does your MO say?

[SeosamhM]

Yes, bone pain is one of the common side effects of Pluvicto treatment, which has been less "low side effect" than I would have liked. In fact, it kicked my rear and I really wanted to stop at 5, but I was able to get through to 6. I'm six weeks out from this last and hoping now to start rebounding and having diminished aches/pains.

[Mejb65 in reply to SeosamhM]

What happened with your psa levels

[SeosamhM in reply to Mejb65]

Hey, Mejb65, thanks for asking. It’s a mixed bag - my PSA went down to 0.78 from 4.7, but the tumor on my right scapula grew. I just got out of my 3rd of 5 focused radiation treatments on it.

Overall, it looks as though my PSA isn’t a good indicator - it’s “discordant” with my tumor growth.

[Mejb65 in reply to SeosamhM]

My dad just finished his 6th treatment a couple of weeks ago. Psa went down then up again. It’s caused pretty bad bone pain though. Mri scheduled to check on tumor growth. Initially had a fracture on spine because of a tumor so checking to make sure that is not happening again. Blood work is good despite the rise in psa. Seems that psa numbers are not always a good indicator of what’s actually going on. Which I have read several places. Cancer sucks. Hoping your subsides. Thank you for sharing.

[deepsci]

We just had a presentation yesterday from folks at Telix Pharmaceuticals, at our support group, ipcsg.org, here in San Diego. They have a new Lu-177 treatment using attachment to an antibody to PSMA that gives nearly side effect-free treatment in two injections two weeks apart -- not six injections over 9 months. They thought they were nearly ready for phase 3 in this country when they gave us an update last year, but there were delays.... Now they are saying "by year end." See the video on YouTube.com/@prostatecancersupport in about a week. I will summarize the talk for our next newsletter about August 18th. They noted the two main side effects of Pluvicto are dry mouth/eyes and back pain. Sorry for your bad experience.

[Miccoman]

Look into the week-long, diminishing dose, steroid protocol for Pluvicto induced pain.

I had a second opinion on treatment options from an MO at MSK. She said Pluvicto but that I was a good candidate for "rebound pain" and I should get a steroid with the Pluvicto.

So far my RO has resisted getting me to Pluvicto (due to my reaction to her radiation of my spine) but at our last meeting, attended by both my sisters, that she would now consult with the MSK doctor about what the steroid treatment is. She is also very worried about steroid side effects. WTF? I'm terminal, about 24 months left, and she is worried that I might feel too good?

This is months after I told her, and played back the MSK doctor's comments, about the need for the steroid treatments. She called me a few weeks ago because one of her patients had extreme rebound pain (think Emergency Room visit). So she just blew off the information I presented to her and now, only when faced by a nurse (retired) and my other sister, did she say she would find out what the protocol is and that she would give me Pluvicto with it. I am also asking the MSK doctor to reach out to my RO (again!) and will ask my MO to make sure this all happens.

Why such a fight to get care?

URMC is all about the doctors and, in my experience, doesn't really care about the patients' QOL. You know, blindly follow full-dose SOC and only treat side effects post appearance without any thoughts about prophylaxis. This was how they handled my docetaxel, which led to such severe side effects I had to stop after only 4 infusions.

If I only had the means to go to MSK! Instead I have to take my chances here. At least I won't have to do this much longer...

[barrybayarea]

I do too, after my 4th infusion but I was told that it is because Pluvicto failed for me and my cancer is spreading through my bones 😊 your reasons or causes may vary, best of luck

[Mejb65 in reply to barrybayarea]

Can I ask what your psa level did during this time?

[PC-22]

I am a long time visitor to this forum but have yet to ever post anything. I have learned a lot from the community though and am glad it’s available. With that said, I just have to reply as your question is very interesting to me.

I am currently on the PSMAddition trial and received my first treatment of Lutetium-177 on January 26th of this year. I immediately began to experience the “pins and needles” thing you mention. Initially, I was having them all over my body including the tip of my Penis. However I could not find “pins and needles” listed anywhere online as a side effect for Pluvicto.

Since I am on a trial (Mayo Clinic) in Phoenix AZ. I have regular follow up appointments with the site coordinator and have to answer questions almost weekly, especially at the beginning. So I mentioned to her and she documented it but also looked it up and said it is not a listed side effect.

Anyway, the pin/needles thing went away from that spot after just a week or so but I continued to have them throughout my body. Especially arms, legs, hands and feet. But now that I just had my 5th treatment, they are mostly in my feet and toes and sometimes in my fingers. However, I still get them on rare occasions on my thigh and shoulders but not very often anymore but the feet and toes I get daily.

My hope is that it is the isotope working / killing cancer cells in these areas but your question is the first I have seen of anyone else experiencing this phenomena other than myself until now. Thanks for bringing it up. I hope there will be more responses to the questions you bring up.

[JoeyDad]

thanks for sharing your experience with “pins and needles.” I hope that mine start to go away along with the pain.

[PC-22 in reply to JoeyDad]

My pain is still an issue in the femur and pelvic area as well as in the shoulders, calves and feet. Generally manageable but getting up from a chair is almost always uncomfortable. I am able to work in my garden most days for an hour or two but eventually my legs (especially lower legs) start to feel heavy and then the pain increases along with severe fatigue so I have to come inside to rest. Initially, oxycodone didn’t help much but now it helps to a degree.

I’m not sure what else to do. My PSA is less than .1 or as they say undetectable. My scans seem to indicate little to no progression so I am dealing with the pain best as I can. Since, I will only get 1 more treatment I am hoping the pain will subside once completed.

If I may ask:

What are you receiving in addition to Lutetium-177?

How long have you been dealing with PC?

Are you receiving your Pluvicto as part of a trial?

[JoeyDad in reply to PC-22]

I’m not receiving other cancer meds besides Pluvicto. I was diagnosed in 2012 and I’ve had most of the other “goodies.” I’m not part of a trial. After starting Pluvicto my PSA went up…then down…then up. My scans are relatively stable. Hoping for good results on the next infusion. Best wishes to you.

[robert570]

I just got done with my 3rd infusion and my biceps are sore and I need help getting a jacket on. Weak legs and sore hips. Extra effort to get out of bed or my chair. Neuropathy bad in my feet. Other than that, I'm perfectly healthy! LOL I take in stride.

[ishitasen]

It may happen in few patient, specially 24 to 72 hrs post-infusion and then later on it subsides. Please take proper bed rest and pain killers as and when required.