After the 1st infusion of Pluvicto, you need advice

[Zavulon1945]

Hello to all brothers in arms !!! Got my first dose of Pluvicto three days ago. The pain in my shoulder and right leg has not gone away. Does it take time? And one more question: what to support my body with between sessions? I have been and am taking D3, Omega3, Calcium and Magnesium. Does anyone have anything from personal experience that would further strengthen? Any response would be appreciated!!!

[Tall_Allen]

"Does it take time? " Yes, it can. At first one gets an inflammatory response that might increase pain.

" I have been and am taking D3, Omega3, Calcium and Magnesium. " Do not take anything that your doctor has not specifically told you to take. Many supplements may interfere with Pluvicto, particularly mineral chelates found in most mineral supplements.

[Zavulon1945 in reply to Tall_Allen]

Thank you, Allen!

[BigM62 in reply to Tall_Allen]

Tall_Allen I’m starting pluvicto on Monday. I’ve been taking an extensive supplement list that my doctor (UT Southwestern in Dallas) is fully aware of. But when I ask about what to stop, keep, or do differently all I hear is drink water and eat a balanced diet.

Do you have an opinion on anything specific to avoid in supplements?

[Tall_Allen in reply to BigM62]

Why risk taking any?

Harsini et al. conducted a small clinical trial where patients were randomized to take tomato juice with and without monosodium glutamate (MSG). Glutamate is a known heavy-metal chelator. Each patient had two double-blinded PSMA PET scans -- one with MSG; the other without MSG. MSG did reduce the uptake of PSMA into the salivary glands and the kidneys. Unfortunately, it also blocked the uptake of PSMA into tumor tissue. Armstrong et al. reported a similar trial where patients could swish MSG in their mouths or ingest it. Each patient had Ga-68-PSMA-11 PET scans with and without MSG. Swishing had no effect. Oral ingestion reduced uptake in salivary glands and in tumors. Patients getting PSMA theranostics should avoid MSG and Chinese food.

Because the PSMA-targeted radiopharmaceuticals are very loosely held together (chelated) by a coordination complex, it is easily reversed by other heavy metals (like iron, cobalt, vanadium, etc. supplements) or other chelates or chelators (like those frequently found in multi-mineral tablets). Curcumin, a popular supplement, has been found to be a chelator. Use of such supplements may increase the toxicity of these radiopharmaceuticals, or render them ineffective. Antioxidants and free radical absorbers may interfere with the DNA damage that radiopharmaceuticals are trying to achieve. To be safe, and to maximize their effectiveness, patients should avoid all supplements during therapy.

[dhccpa]

I had chills after one infusion but never any pain that I can recall.

[Zavulon1945 in reply to dhccpa]

I had pain from metastasis to injection. I hoped that after the injection, the pain would go away.

[dhccpa in reply to Zavulon1945]

Check with TA but my understanding is the Provenge does little or nothing to heal already existing metastases, or stop their side effects. Double check that.

Provenge is more a tool to prevent development of future metastases, I think.

[Zavulon1945 in reply to dhccpa]

It isn't. Pluvicto is able to remove already existing metastases as well.

[Professorgary in reply to Zavulon1945]

Do you mean pluvitco or provenge?

[dhccpa in reply to Professorgary]

My mistake, sorry. I did that last week. Time to resume medical cannabis and just be blissful.

[Zavulon1945]

You've just confused Pluvicto with Provenge.

[dhccpa in reply to Zavulon1945]

Yes, I did for the second time recently. Sorry about that. I'll be starting a reading comprehension refresher next week.

[RyderLake2]

Hello,

My medical oncologist recommended I take Denosumab for bone strength. It is marketed under several names e.g. Prolia, Jubbonti and Wyoti (sic). In higher doses it is marketed as Xgeva. Good luck!

[Zavulon1945 in reply to RyderLake2]

Хgeva it's not about the pain. It's about something else. And my question was about something else entirely.

[OverW3RK3D]

I was on Xgeva for 8 months (1doseQ4weeks). My calcium went from “undetectable” (was in ICU) to normal and my Alk/phos normalized after the second dose.

Been on ADT for 1 year - Lupron/Nubeqa & also 1 massive dose of Docetaxel chemo in May 24.

My PSA started at 82 and decreased incrementally to a low of 1.55 and has been rising slowly. Last week my PSA was 7.55.

Xgeva + Docetaxel caused mucositis (mouth broke out in blisters & esophagitis. Lost almost 50lbs.

It also caused 9 of my teeth to develop cavities. I haven’t had a cavity since I was 15 and now I’m 58. My dentist spoke with my MO and we stopped Xgeva due to the concern that my jaw may rot off (aka Jaw necrosis) which is a side effect of Xgeva and similar medications.

My next step is Pluvicto if we can get it pre-authorized by insurance.

[Miccoman]

When I got my second opinion regarding Pluvicto, the MO at Memorial Sloan Kettering talked about "rebound pain" and recommended a diminishing course of steroids for the week of the injection.

My only side effect was that I had to reduce the dose of steroids because they made me feel too good and required massive doses of medical Marijuana to keep me to an appropriate activity level! LOL

In general, though, I do take CBD oil sublingually (under the tongue). The 3/4 dropper full of 500mg CBD oil gives me about 17mm a dose and I do it twice a day (morning and before bed). I think it helps with bone pain. Have been doing this for years.

I have had acupuncture and then a big reduction in bone pain so I'm continuing that. Amazing how it works.

As always YMMV.

[Zavulon1945 in reply to Miccoman]

Thanks for the advice. But my question wasn't about how to reduce the pain. My question was whether the bone pain that I had before Pluvicto would disappear after a while.

[SeosamhM in reply to Zavulon1945]

Your pain will likely fade over time if Pluvicto is working on met reduction (as indicated by PSA and scans). But it wasn’t until I was completely through Pluvicto plus 3 months that my pain was eliminated. If the treatment is working, trust the process and push through. Good luck.

[Zavulon1945 in reply to SeosamhM]

Thank you!!!

[Zavulon1945 in reply to SeosamhM]

Uh, excuse me. Would you mind sharing what kind of analgesics you used until the pain went away?

[SeosamhM in reply to Zavulon1945]

Since my pain was very like that of arthritis, I simply approached it with my preferred choice of NSAID - aspirin - a couple of times a day after eating. However, I discovered this article during my first chemotherapy in 2016 the use of diphenhydramine (Benadryl) - it worked for me:

pubmed.ncbi.nlm.nih.gov/114...

I understand that in Europe this may require prescription.

Honestly, though, my best relief was through regular activity and daily use of a steam or dry sauna.

[Zavulon1945 in reply to SeosamhM]

Thank you!!!

[Neathuh1]

Hi. You probably need another reply like you need another type of cancer, but just FYI, after my 6 infusions of Pluvicto all but one of the metastases in my lungs went into remission. Had three targeted radiation blasts to the one rogue tumor and it now is also in remission. (Still not clear what, exactly, "remission" means, but it makes everyone, especially me, happy). Pluvicto was a game changer for me and many. My PSA dropped to 0.47 and I'm presently on holiday from all meds and their crappy side effects. Give it time. God be with you!

[Zavulon1945 in reply to Neathuh1]

Thank you for such an encouraging response. Good for you. Remission is wonderful!!! May God continue to bless you!!!

[Zavulon1945 in reply to Neathuh1]

Uh, excuse me. Would you mind sharing what kind of analgesics you used until the pain went away?

[Neathuh1 in reply to Zavulon1945]

Here’s my miracle story. I’ve never experienced a single symptom from my stage 4 prostate cancer. It was discovered by chance 12 years ago and I’ve never needed an analgesic. Have had many side effects from the surgery, radiation and meds, but never any pain. I am so blessed.