Advanced Prostate Cancer

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Any advice and tips about Pluvicto treatment... please!!

3 months ago•56 Replies

My husband it's scheduled to have the first Pluvicto treatment on December 22. I don't know what to expect.His psa it's at 10.88😳 Was diagnosed Nov 2010. Already went through surgery, chemo, radio, Lupron and all the fancy stuff. His Oncologist stopped Lupron after 18 months and the psa remained undetectable for about 2 years. Unfortunately the Oncologist passed away and he's seen someone different.

This new Oncologist recommended the Pluvicto and here we are and this new adventure. Anyone who has done this treatment if you can please give me ideas of side effects etc.. Thank you so much! You are not alone, there is hope🙏

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Chiquis

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RunThru3 months ago

Not bad. I think a little tired. Maybe some dry mouth. After first treatment I tried to do too much, and ached for about 4 days. Since then I just chill for 2 or 3 days. Good luck!!

Chiquis in reply to RunThru3 months ago

Thank you for taking the time to respond. I wish the best for you.You are not alone🙏

tango653 months ago

I had the treatment in 2016 in Munich. They make everybody stay 3 nights at the hospital. I tolerated the treatment very well. Fatigue pretty intense but it lasted about 24 hours. Some edema because the gave me a lot of fluids IV, which they do not do in the USA. The edema resolved with diuretics. No problem with the salivary glands or kidneys.

Most people tolerate the treatment very well unless there are too many mets and diffuse bone marrow infiltration by the cancer. In this situation the treatment may cause bone marrow suppression.

Chiquis in reply to tango653 months ago

Well, apparently he only has 2 lymph nodes on chest that light up on PSMA scan.Thank you so much for the valuable information. You are not alone🙏

Daddyishealing in reply to tango656 days ago

By bone marrow suppression you mean the body won't be able to make cells and if this happens what is done immediately?

tango65 in reply to Daddyishealing6 days ago

Stop therapy, do blood transfusions to increase RBC and drugs to increase WBCs production if indicated.

tango653 months ago

If he has only 2 lymph nodes on the chest, most probable he will tolerate the therapy well and have a good response.

When I had the treatment I had only lymph nodes in the pelvis and the the retroperitoneum (5 with high SUV several with lower SUVs) and they were under control just with one treatment.

Consider to request a follow up PET/CT 4 weeks after the second treatment because if this scan does not show mets they should stop treatment.

Chiquis in reply to tango653 months ago

He has tolerated all pass treatments fairly well. I hope he doesn't have to do all 6 treatments since he has gone through a lot. Thank you so much for your advice.

Chask3 months ago

I have had 2 treatments in Sydney Australia. No side effects of any significance. Felt a little weary in the evenings for the 2nd to 4th days, but that was it. No dry mouth. I have a very heavy tumour burden from scapula down to femur - over 50 mets. All bloods have been normal. PSA has gone from 823 to 87. Third treatment planned for January.

Chiquis in reply to Chask3 months ago

I'm so glad that your PSA has lower that much. Indeed an inspiration and very encouraging. Thank you so much for sharing. You are not alone🙏

docbulldog in reply to Chask3 months ago

That is a fantastic drop in your PSA. I wish mine were doing the same thing since I am now heading for my forth treatment with my PSA gradually going upward, 450…580…480…609, I am told that the results of the scan show reduction in mets, so I should not worry about PSA.

I hope that here on the west coast, in Seattle, I am receiving the same quantity of the LU 177 as you received in Sydney.

I too have had about the same side affects with a little bit of dry mouth throughout the six week interval.

Chask in reply to docbulldog3 months ago

i have yet to see a follow up scan since my treatment started. Hoping to get one soon. My pre treatment scan could be used as a Christmas tree! Isn’t it ironic - my Dr is saying don’t worry about the scan, your PSA is telling the story!!

Daddyishealing in reply to docbulldog6 days ago

Any products that can be bought to help the dry mouth ?

docbulldog in reply to Daddyishealing6 days ago

During my only 3 treatments my dry mouth was very noticeable at night and I could do nothing about it besides getting up and drink fluids. During the daytime I would use sour lemon drop to help stimulate saliva as well as lots of fluids.

leebeth3 months ago

My husband has had 3 treatments and is getting his 4th on Wednesday. He has no side effects but he is diligent about pushing fluids.

Chiquis in reply to leebeth3 months ago

That's great to know. I'm educating myself about the importance of fluids. I pray your husband continues without any side effects. Thank you. You are not alone, there's hope🙏

Daddyishealing in reply to Chiquis6 days ago

If fluids are that important would t it be best to be in hospital where one can get an IV on slow drip?

Chiquis in reply to Daddyishealing6 days ago

Actually they do, before treatment and after treatment they give him fluids through an IV. He still drinks about 2 to 3 liters of water after treatment.

leebeth3 months ago

Best of luck to you! ❤️

RusLand3 months ago

Hello, Chiquis! Read the last three publications together with your husband.. I think you will find a lot of useful things there for yourself! I wrote this for those who follow me down this road! healthunlocked.com/user/Rus...

shipoo3 months ago

I have had three treatments so far with the fourth scheduled for 12/27, all being done at the University of Chicago. So far the treatment has been very successful with a significant reduction in my PSA. I remain cautiously optimistic. I have had no side effects except for some dry mouth that was gone within a couple of days after the first two treatments, but was much longer lasting after the third treatment.

Wishing your husband and you the very best.

Chiquis in reply to shipoo3 months ago

Great to heard your PSA has lowered. Thank you for the information. Keep fighting. You are not alone🙏

TWTJr3 months ago

I have completed 5 of 6 treatments. Moderate fatigue, moderate dry mouth. Mild anemia. Otherwise no significant symptoms. PSA started at 11, and after four treatments PSA 0.13.

Chiquis in reply to TWTJr3 months ago

Almost done!👍🙏Very encouraging. Thank you. You are not alone, there's hope.

TheWizardofWesley3 months ago

Hi Chiquis ...and good luck.. If I may ask.. What part of the country do you guys hail from? I'm in Tampa Fl. and a patient at Moffitt trying to get started on Pluvicto but was told they wont have any until March 2023.. I'm due a PSMA scan this week.. Currently I'm on Chemo but it is not working and that is the next step.. any insight you can off would be greatly appreciated.

Again Best of Luck and Keep the faith, Larry

Chiquis in reply to TheWizardofWesley3 months ago

Hi Larry, We are in the West Coast. He is going to UCLA. They told us that he will have to wait about 6 weeks but thank God they call us to schedule in about 3 weeks. I'm sorry to hear that chemo isn't working. I will definitely post how things are going. My husband was diagnosed Nov 2010. By the grace of God he still here with me. Keep fighting you are not alone.🙏

TWTJr in reply to TheWizardofWesley3 months ago

Excel Diagnostic Center Houston

EB6653497 in reply to TheWizardofWesley3 months ago

Hi Larry. Currently had scan at Moffitt December 12th. Consult 12-14. Approved for treatment but was also told approval and wait for medication will take time. They mentioned February 2023. No other information or appointments. Wishing us both good luck Richard

TheWizardofWesley in reply to EB66534973 months ago

Hey Richard, Yes I was told March for LU-177 yet they have it at MD Anderson in Houston.. and at the Mayo Clinic in Rochester MN.. I'm going to try and get the records dept. at Moffitt to expedite my scan over to the Mayo.. and have Dr. Kwon's team read it... Hopefully I can get approved and get this show started.

Daddyishealing in reply to TheWizardofWesley6 days ago

Any look into BAT therapy . My dad never had and a stage 1 chemo trial real did bad though it bought us time . Now he is bedridden and we are praying to make it to treatment in May bc treatment got cancelled that was supposed to be now

TheWizardofWesley in reply to Daddyishealing6 days ago

Sorry, DIH ... I don't quite get what you are saying, not sure if you voice typed your message..but it's not clear. Please read it back and correct it.I'm sorry your dad is bed ridden at this time.

TheWizardofWesley3 months ago

Same here diagnosed Nov 18 th of 2010.. we are a few of the lucky ones.. I am part of a "Secret group on FB (A Reluctant Brotherhood) I can sign him up if he is interested.. Just friend me on FB it's a Men's only group.. this way we can talk and share anything without offending our spouse's.. LOL.. Everyone else that was diagnosed with bio chemical failure PCa back then sadly is gone Has he been on any chemo or Taxotere yet?

Chiquis3 months ago

Continue the fight.My husband had 6 rounds of chemo along with Lupron and Zytiga. Prior to that surgery and radiation😲 He was responding excellent to Lupron but the oncologist wanted to give him a brake. PSA was undetectable for almost 2 years, then began to rise rapidly. If it was my choice I would like for him to try Lupron again instead of Pluvicto. I just hope for the best with this new treatment. I will let him know about the FB he's a retired navy 63 year old man. The best of wishes for you.🙏

meowlicious99 in reply to Chiquis3 months ago

He is getting Pluvicto without lupron ? Curious if this is under a clinical trial ?

Chiquis in reply to meowlicious993 months ago

Yes, only Pluvicto. No clinical trial.

TJGuy in reply to Chiquis3 months ago

Is receiving Pluvicto alone unusual? Am I correct that at the current time FDA approved Pluvicto under the requirements you must have had chemo, and 2nd level ADT? And be castrate resistant

Chiquis in reply to TJGuy3 months ago

I guess my husband qualified base on the fact that he already had chemo and ADT. However what it's confusing for me, is that he isn't castrate resistant since Lupron was working for him. He stopped Lupron to have a brake and with the hope that Chemo, Zytiga and ADT will maintain PSA undetectable.This was the case for a bit more of 2 years. In other words, I don't know if he's castrate resistance since he stopped Lupron, isn't that Lupron stopped working🤔

pilot52 in reply to TJGuy3 months ago

Vision Trial you had to have had Chemo.....Pluvicto pre chemo....

TJGuy in reply to pilot523 months ago

Thanks for response, How did your recent visit to India go? I look forward to your reports.

noahware3 months ago

Generally, the fatigue is not too severe and lasts only a few days. I had the less common effect of pretty bad nausea, but then used Zofran for the following infusions (taken beforehand) and it was VERY effective.

Some will recommend gum or mints to stimulate saliva flow, which may help prevent dry-mouth. But ABOVE ALL, be sure to be extremely well-hydrated on the day before, the day of, and the day after every infusion that is received. The excess radiation removed via the kidneys with frequent urination. Side effects can be MUCH worse if this is not done!

Chiquis in reply to noahware3 months ago

Great to know.Thank you so much for this advice. I will make sure he stays hydrated and keep Zofran on hand. Do I have to be away from him 3 days? The best wishes for you.

noahware in reply to Chiquis3 months ago

They will give you a list of all the recommended distancing and other practices (laundry, toilet, etc) for radiation safety. Yes, you will need to keep some distance for some time to protect yourself from exposure.

JoeyDad3 months ago

Chiquis- I’m 77…diagnosed in 2012..had lupron, zytiga, and both chemos. My PSA is now 12 and I’m getting ready to test for pluvicto. One of my friends is also getting Pluvicto…fatigue is the biggest issue so far. Let’s hope it works for all who need it.

TheWizardofWesley in reply to JoeyDad3 months ago

Good Luck Joey's Dad ❤️👍❤️

Chiquis in reply to JoeyDad3 months ago

Amen to that JoeDad. I hope everything goes well. Thanks for the info. You are not alone🙏

TheWizardofWesley3 months ago

Yes That's what I was made to understand as well.. Sounds like he got a free pass to get out of Jail (sorry for the humor but it helps me with what we ALL have to deal with.. ❤️

TheWizardofWesley3 months ago

Sorry I just read that your husband did receive Chemo and the rest of the poisons... I do hope it works for all of US.. we need more time to hopefully be around for any new developments. and to Love to love the ones we love longer.

PS I was able to get on the schedule for a PSMA F=18 Pet Scan for Jan 12th...Hope I qualify Crazy to say that.. you hope your disease is bad enough to get treatment??? 🤪

Chiquis in reply to TheWizardofWesley3 months ago

Great to hear that. January is around the corner. For now relax, enjoy and love each day at a time.🙏

docbulldog3 months ago

Just want to throw this out to all that might read it.

I’m to have my 4th Pluvicto treatment next week 12/27 and am feeling a little more pain in my hips and legs. Have others had more pain as you start getting to the end of the 6 weeks between treatments?

Also PSA hasn’t moved downward like I want to see.

Chiquis in reply to docbulldog3 months ago

Sorry you are feeling pain. You are halfway🙏👍 I'll be posting details about my husband's journey. For now the first treatment it's tomorrow 8:00a.m at UCLA.You are not alone.

NotAlwaysSunshine3 months ago

My husband was able to have 2 pluvicto treatments. I drove him and brought him home after the treatment. I left the house with our dog for a couple days to make sure the dog was safe. He didn't have any horrible medical issues with the treatment. Good luck to you and your husband. I hope he has a great response with pluvicto!

Chiquis in reply to NotAlwaysSunshine3 months ago

May I ask, why he only did 2? I'm praying my husband responds good to treatment so he doesn't have to do all 6. We are 4 hours drive away from UCLA he's planning to drive🤗 I'm planning to ride in the back sit. I'm glad he did well. Thank you so much! You are not alone🙏

NotAlwaysSunshine3 months ago

Hi - He did not respond and had to stop treatment. He's going for Carboplatin mixed with Jevtana on Tuesday. We are praying that he can buy some time with this combo. The longer your husband can stay on a treatment the best! I would rent a van and put him in the way back seat with the windows open if I were you!

CAMPSOUPS in reply to NotAlwaysSunshine3 months ago

Hopin the best for you two. A lot of treatments these last 3 years.

Chiquis in reply to NotAlwaysSunshine3 months ago

I'm very sorry he didn't responded well to the treatment. I will have you both in my prayers. I understand how difficult this journey it's for both of you. Stay strong, you are not alone🙏🤍

NotAlwaysSunshine3 months ago

He has tried just about every possible therapy.

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