Starting pluvicto in another month

[Muffin2019]

This is somewhat scary but read the side effects and what had the members of those who are receiving the treatment. What is the most common side effects have you all had and how well tolerated. I am glad I can do the treatments close to home and will not to go to MSK. Any information would be helpful to me. They stopped the chemo due to rising PSA so I qualify for the pluvicto now and qualify fir the PET scan in two weeks. I hope this works and get longer time being around so it will be worth it. I read where prebiotic will help but what about supplements to help with the side effects ? Thank you for any input from members or links that would help.

[Meshel48]

Nausea make sure you get zofran for this and don't wait if you start feeling bad take is right away don't wait. Also start some type of stool softener or there is something call smooth move which works well just try not to get constipated its not fun and will cause stomaches.

also stay well hydrated our post op instructions say to drink one glass of water per hour but its like pulling teeth for my husband he dislikes drinking water. Ginger ale is helpful to him.

The treatment is easy it takes about a half hour. So easy compared to chemo. Good luck hope all goes well.

[Muffin2019 in reply to Meshel48]

I have Zofran now that I take, I have heard of smooth move, does he take that every day. I am not a fan of water but love has mine green tea due to the fact I do not have to add sugar. I also am a fan of ginger ale, was he able to eat somewhat liking his food. It sounds like a bit easier than chemo that kicked my but, the only benefit is not getting haircuts and shaving once a month. Been outside alot this past week so might have caught a summer cold so just ad well the chemo was canceled this week.

[Meshel48 in reply to Muffin2019]

His taste buds are all messed up. He drinks protein drinks twice day to supplement him not being to eat much because of taste and the feeling on his tongue. Lemon drops is supposed to help with this but need prior eating. He really never lost weight with chemo or Pluvicto , he held on to that 15lbs from ADT. He works out twice a week and has been pushing himself to keep busy and active. And we travel a lot doing the things he likes off road alpine loop , lake havasu boating , jeeping, and shooting. We give it a week after Pluvitco and we are off on a trip somewhere .

[Chewiemo in reply to Muffin2019]

dry mouth is worst SE but manage by drinking lots of water. I have had five treatments and number 6 is coming soon.

I have fatigue but I’m also on ADT which is more likely to blame. Between treatments 4 and 5 my lipase shot up but then returned to normal. Another guy in the clinical trial had high lipase and had to suspend treatment until it went down. I am 71 and hormone responsive . My psa is undetectable but I have numerous bone Mets.

[Rolphs in reply to Chewiemo]

How did you get into Pluvicto trial when you’re hormone sensitive? I thought you had to be Castrate Resistant?

[Chewiemo in reply to Rolphs]

it’s a clinical trial at MD Anderson.

[john4803 in reply to Chewiemo]

I have had 4 treatments (4of4, Eclipse Trial) and they run a Saline IV before and after my infusion. I think that helps with salivary glands. "Dry mouth" shouldn't be permanent. I have about 4 days of "slight" appetite suppression and "slight" constipation. I have no "fatigue" whatsoever.

After the 3rd treatment I started to have some "burning" feeling in my back. Thought it was due to an old "soft tissue" injury but now wonder if it Lu177 related? Ibuprofen helps with the mild pain. It is not a constant thing, either.

[Chewiemo in reply to john4803]

I had modest low back pain after 5th treatment that resolved quickly. My treater opined it could be from shrinking tumors that no longer supported vertebra. With bone healing it got better.

[john4803 in reply to Chewiemo]

Did you take any pain medication for the pain? How long did it take to get better?

Thanks!

[Chewiemo in reply to john4803]

not even an aspirin. Started getting better in a week. Still present if move wrong but I attribute that to age. Same thing happened after second dose. I had a tumor that caused a fracture at T 11 . Doc thought that fracture was from shrinking tumor. I hurt worse but resolved over a month or so. Zero problem now.

[Yank66]

All in all, side effects have been well tolerated. Fatigue is significant and DH’s chief complaint. He has had a couple of bouts with nausea, but it is short lived with Zofran. Mild anemia and lowered platelets have required dietary adaptations-foods rich in iron and those that boost latelets. Drink the water to keep kidneys and salivary glands working. Lemonade, tea, ginger ale count. Best of luck to you. This can be a miracle drug!

[cfrees1]

like all the treatments, the side effects seem to vary by patient. I was one of the lucky ones and had no side effects. We now wait and see on how lon this will last but since I started in February there has been no indication of progression per scans. Good luck!

[john4803 in reply to cfrees1]

Thank you and best to you! Did not see an update on your Bio of your current results? Mind sharing the results of the Eclipse Trial, so far?

[cfrees1 in reply to john4803]

I completed the fourth and final treatment at the end of June and had bone and CT scans this past Monday. No evidence of disease progression thus far so I go on an 12 week imaging schedule now until progression. I’m happy so far with the treatment.

[Flyfisherbug]

getting ready for third treatment. No side effects so far except bone pain left hip starting to run down left leg. Could be sciatica as comes and goes. Using Salonpas patches and 800 Motrin or 1500 Tylenol. Had problems in hip before but not like this.

[TTJJ1]

Will be having my 4th infusion of Pluvicto on Friday. Most troubling SE is tongue and taste issues. First tried a number of meds prescribed by Oral Medicine at Dana Faber; nothing seemed to help. Recently started daily B complex and zinc and Pepcid twice a day. Taste is now much better. Some fatigue at times but still 3 mile run daily and working fulltime. The good news is 80% drop in PSA. Best Wishes to All, Stay Strong.

[john4803 in reply to TTJJ1]

I was given a saline drip before and after my infusion, which may have helped my saliva glands?

[john4803 in reply to john4803]

Would you mind updating your Bio? Thanks!

[Muffin2019 in reply to john4803]

Did doxental in 2018, lupron and xgeva since, did zegtia that lasted a year and half then xtandi that never worked, the Mets went to the liver and bladder. Did cabitexel last year for 8 months. Did the doxental the past 2 and half months, was going to MSK for possible trial of pluvicto but now do not have to travel. Will look at my bio and update eventually.

[j-o-h-n]

Why are you bypassing MSK?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/22/2023 9:45 PM DST

[Muffin2019 in reply to j-o-h-n]

The oncologist here can give me the treatments instead of traveling 5 hours to MSK. They were lining up people for future trials with plevicto but I qualify for the treatment here.

[j-o-h-n]

I see you lucked out.......... but you're gonna miss all the fun here in the Big Rotten Apple....

Stay Well and may the treatments be as easy as having a beer.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 07/23/2023 9:44 PM DST

[Muffin2019 in reply to j-o-h-n]

Yes thank God fir that, it came as a nice surprise. Had to go to the ER fir pneumonia yesterday, did not think you could get it in the summer.