Pluvicto : Start Pluvicto Friday... - Advanced Prostate...

Advanced Prostate Cancer

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Pluvicto

EB6653497 profile image
52 Replies

Start Pluvicto Friday January 20th. Any recommendations.?

I already have so much pm pain in back legs hips thighs - do not sleep

Any suggestions appreciated

52 Replies
Tall_Allen profile image
Tall_Allen

Remember that the pain may worsen temporarily due to an inflammatory response to the radiation. Good luck!

EB6653497 profile image
EB6653497 in reply to Tall_Allen

thank you. They are supposed to consult me on supportive care at Moffitt for pain management. In your experience - is there anything that helps the pm pain in order to sleep?

Tall_Allen profile image
Tall_Allen in reply to EB6653497

I am not a pain expert, but there are doctors who are. I think it's very individual - what works for someone else may not work for you. All you can do is experiment to find the right medication for you.

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

They have dosing for NEW patients available ?

I see Dr. Chang for my pain management. I also see a Dr. Kalin at the Medical Marijuana Clinic in South Tampa.. Get yourself a MM card and see if the edibles will work for you... I find them excellent for my pain management and for my poor sleeping. I also use two different topical creams from MUV a local dispensary here in Town. Good Luck with your treatment

tango65 profile image
tango65

If you are in such a pain and unable to sleep, you could request to your doctors to consult in a pain clinic. Many hospitals and cancer centers have pain clinics and they could recommend and adjust medications to try to palliate the pain.

Hopefully, if Lu 177 PSMA works eventually the pain will improve. The best treatment of the pain is to control the cancer.

EdBacon profile image
EdBacon in reply to tango65

I agree, LU-177 has a good track record for improving pain because as you said, it's killing the cancer. All I can do right now is use pain meds to cover up the pain and it's frustrating, knowing that it's not doing anything to fight the cancer. But many of us have had to get in line to get Pluvicto and in the meantime our cancer is progressing.

Fightinghard profile image
Fightinghard

the Pluvicto triggered really strong bone inflammation pain in my ribs back and hips for about a week after each infushion i could barely move at all because of pain. each round the pain cycle was stronger i guess the radiation really pissed off the nerve endings

I was able to compete 3 of planned 4 infusions before cancer progressed on scans and i was pulled from the trial

Dr at Moffit gave me steroid dose pak after round 3 That really helped knock down the inflammation. Now on low dose prednisone daily. Went to supportive care clinic for pain consult, first tried oxycodone but did not like it, then pain dr suggested tramadol. Not as strong of a drug but it helps me a lot to take down pain. A side benifit is that it makes me drowsy so falling asleep is not an issue

wat380bjw profile image
wat380bjw in reply to Fightinghard

Who do you see at Moffit? Do you like him? Thanks Brad

EB6653497 profile image
EB6653497 in reply to wat380bjw

I see Dr Zhang for prostate formerly Dr Fishman. He seems ok. Hard to understand especially with mask. I have been seeing them every 3 months then every 6 weeks since 2016. I’m basically treated by standard of care. The Zytegia seemed to be working but when it stopped my cancer went from Mets to the pelvis area only to - from shoulder to femur with pain and other symptoms. I also see Dr Baz annually for 2 out of 3 multiple myeloma markers.

wat380bjw profile image
wat380bjw in reply to EB6653497

Thank you!!!!

Fightinghard profile image
Fightinghard

stay well hydrated. The Pluvicto is filtered out by you kidneys. Hydration helps the kidneys flush it out and reduces chances of radiation damage

EdBacon profile image
EdBacon

I'm waiting for Pluvicto and meanwhile, my cancer is progressing. My pain goes up and down, mainly in my left hip and thighs. I'm using a combination of Ibuprofen and Hydrocodone. I really don't like using opioids but there is simply no other way. Without them, I would not want to live any more. The pain is too much sometimes. I've tried cannabis, but it doesn't work for this level of pain.

tango65 profile image
tango65 in reply to EdBacon

Sorry to hear about your pain. Perhaps you could request a consult with doctors who perform radio ablation for pain relief.

my.clevelandclinic.org/heal...

It seems to be a procedure which could control pain effectively and without drugs.

EdBacon profile image
EdBacon in reply to tango65

I've discussed it with my doctor, but he said they want at least a month without any other treatments before doing Pluvicto so I can't do it now. I do think it would be helpful in the future though.

EB6653497 profile image
EB6653497 in reply to EdBacon

I too am having so much pain especially in the pm. Affects sleeping. Due to start Pluvicto this Friday. Maybe better? Maybe worse?

EdBacon profile image
EdBacon in reply to EB6653497

It's likely that Pluvicto will help with pain, but until then are you taking anything for your pain? It's so important to be able to sleep, that's where I draw the line. I can tolerate a bit more during the day, but when it's time to sleep, I make sure I'm medicated enough. Please don't suffer needlessly.

EB6653497 profile image
EB6653497 in reply to EdBacon

Thank you - little daily pain but seems to accelerate around 9 pm I’m currently alternating between ibuprofen 600 extra strength Tylenol and occasional hydrocodone. Anxiety meds don’t seem to help. Maybe just not the best combination. Awaiting pain management consult as well. Maybe I’ll see you at Moffitt. Good luck.

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

We should all meet at Bagels Plus right down the street from Moffitt on Fletcher Ave. and compare notes.. The owner is a funny guy and a good friend. 👍

EB6653497 profile image
EB6653497 in reply to TheWizardofWesley

sounds like a plan. As far as we know we will be at Moffitt from 930 - ? This Friday.

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

I'm going to be there on Thursday @ 10:30 for my Eligard injection.

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

My next visit is on the 24th for Blood work and Chemo Cycle #6 I'll be there from 8:30 - 1:30

EB6653497 profile image
EB6653497 in reply to TheWizardofWesley

since we are 70 miles away - depending on how I feel - are you available this Friday 3ish or is shop only open am?

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

They are open until about 4:00 but not sure if there will be any bagels 🥯 left 🤔

EB6653497 profile image
EB6653497 in reply to TheWizardofWesley

well in order to see everyone I need to see labs have been moved up to 630 am from 930

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

That's an early start if you guys live 70 mi. away .. WHEW! FYI Seems that I failed the PSMA scan.. so I'm eligible to start LU-177 Waiting on the Consent form and then my Insurance approval.. which should not be a problem... just time consuming. Keep me in the Loop I'm only about 30 mins out from Moffitt... and the Bagel Shop

EB6653497 profile image
EB6653497 in reply to TheWizardofWesley

we can reach out once we are complete

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

Ok Sounds like a plan.

EB6653497 profile image
EB6653497 in reply to TheWizardofWesley

well I’m in for noon tomorrow after 7 am labs. Just remembered the “rules”. I am not to be in public places or around others for 5 days so if I have the treatment we will need to take a rain check. If my labs are not strong enough to receive Pluvicto I’ll let you know.

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

Just an FYI.. there is outdoor seating at Bagels Plus... and I'm sure that the 3-6 ft. min. personal space could be achieved..

TheWizardofWesley profile image
TheWizardofWesley in reply to EB6653497

PS I almost forgot (Chemo Brain) Wishing you the Best of Luck !!

HopingForTheBest1 profile image
HopingForTheBest1 in reply to EB6653497

Was also having difficulty sleeping with back pain. Was using Tramadol right before bed, with little benefit. Dr then put me on Morphine 15 mg, which worked alot better.

Just 4 days after my first Pluvicto (Jan 12) pain has subsided, with no need for med and sleeping well.

Fightinghard profile image
Fightinghard in reply to HopingForTheBest1

Good news. hoping the Pluvicto gives you long term relief.

EdBacon profile image
EdBacon in reply to HopingForTheBest1

"Just 4 days after my first Pluvicto (Jan 12) pain has subsided, with no need for med and sleeping well."

That's what I'm hoping for. How were the side effects?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to EdBacon

Loss of appetite and taste, sore throat, coughing, nausea, weight loss, fatigue.

EdBacon profile image
EdBacon in reply to HopingForTheBest1

Wow, that's a lot. Hopefully all of those side effects didn't last very long.

EB6653497 profile image
EB6653497 in reply to HopingForTheBest1

how are you today?

HopingForTheBest1 profile image
HopingForTheBest1 in reply to EB6653497

Same symptoms, less nausea. Dr said it should get better about 2 weeks after treatment.

EB6653497 profile image
EB6653497 in reply to HopingForTheBest1

having some nausea but the pain is there however I am cautiously optimistic that it isn’t as bad. I can sleep for longer periods however not all night but improvement 

HopingForTheBest1 profile image
HopingForTheBest1 in reply to EB6653497

Sleep is something I am getting a lot of; up to 10 hours at night, plus an occasional nap during the day.

EB6653497 profile image
EB6653497 in reply to EdBacon

I missed this. How many Pluvicto have you had

EdBacon profile image
EdBacon in reply to EB6653497

None yet. I get my first on January 30.

EB6653497 profile image
EB6653497 in reply to EdBacon

I was able to get Pluvicto yesterday - Moffitt - still pm pain - Dr Zhang wrote rx for Tramadol - fatigue- next treatment March 6th. Good Luck

EdBacon profile image
EdBacon in reply to EB6653497

Just had an appointment with my doctor. He said one of his patients got complete pain relief in 2 days. Wishing you the best.

EB6653497 profile image
EB6653497 in reply to EdBacon

having some nausea but the pain is there however I am cautiously optimistic that it isn’t as bad. I can sleep for longer periods however not all night but improvement - are you still scheduled soon

EdBacon profile image
EdBacon in reply to EB6653497

I'm still scheduled for Jan. 30. 1 week to go.

EdBacon profile image
EdBacon in reply to EB6653497

Had pain all night last night, no sleep even with hydrocodone. Hope Pluvicto works.

EB6653497 profile image
EB6653497 in reply to EdBacon

hang in there. Far from perfect but pain is reduced and sleep is improving. Is your upcoming treatment at Moffitt Tampa?

EdBacon profile image
EdBacon in reply to EB6653497

No, I'm in California

EB6653497 profile image
EB6653497 in reply to EdBacon

hang on - keep us informed and I’ll do the same from Venice FL

EdBacon profile image
EdBacon in reply to EB6653497

How's the pain level? Has it improved more?

CAMPSOUPS profile image
CAMPSOUPS in reply to EdBacon

Hang in there Ed.. I know that it aint no fun like that.

Poowater profile image
Poowater

see how the treatment goes.

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