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
Pluvicto : Start Pluvicto Friday... - Advanced Prostate...
Pluvicto
Written by
EB6653497
To view profiles and participate in discussions please or .
55 Replies
•
Remember that the pain may worsen temporarily due to an inflammatory response to the radiation. Good luck!
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?
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.
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
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.
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.
Same with my dad who is losing his will bc treatment got cancelled and now treatment is in May.
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
Who do you see at Moffit? Do you like him? Thanks Brad
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.
One of the things about Tramadol is it works on nerve pain, something opioids aren't good for. So I can imagine you getting relief in that area that you didn't have with other pains meds. I think I will need something for nerve pain too.
thanks Ed. I am working with dr Bundley in supportive care clinic too. She is great and wants to help minimize the pain we all endure. If not already talking to them in supportave care, ask dr Zang to refer you. Pain management is their specialty
stay well hydrated. The Pluvicto is filtered out by you kidneys. Hydration helps the kidneys flush it out and reduces chances of radiation damage
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.
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.
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.
I too am having so much pain especially in the pm. Affects sleeping. Due to start Pluvicto this Friday. Maybe better? Maybe worse?
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.
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.
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. 👍
sounds like a plan. As far as we know we will be at Moffitt from 930 - ? This Friday.
I'm going to be there on Thursday @ 10:30 for my Eligard injection.
My next visit is on the 24th for Blood work and Chemo Cycle #6 I'll be there from 8:30 - 1:30
since we are 70 miles away - depending on how I feel - are you available this Friday 3ish or is shop only open am?
They are open until about 4:00 but not sure if there will be any bagels 🥯 left 🤔
well in order to see everyone I need to see labs have been moved up to 630 am from 930
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
we can reach out once we are complete
Ok Sounds like a plan.
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.
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..
PS I almost forgot (Chemo Brain) Wishing you the Best of Luck !!
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.
Good news. hoping the Pluvicto gives you long term relief.
"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?
Loss of appetite and taste, sore throat, coughing, nausea, weight loss, fatigue.
Wow, that's a lot. Hopefully all of those side effects didn't last very long.
how are you today?
Same symptoms, less nausea. Dr said it should get better about 2 weeks after treatment.
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
Sleep is something I am getting a lot of; up to 10 hours at night, plus an occasional nap during the day.
I missed this. How many Pluvicto have you had
None yet. I get my first on January 30.
I was able to get Pluvicto yesterday - Moffitt - still pm pain - Dr Zhang wrote rx for Tramadol - fatigue- next treatment March 6th. Good Luck
Just had an appointment with my doctor. He said one of his patients got complete pain relief in 2 days. Wishing you the best.
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
Had pain all night last night, no sleep even with hydrocodone. Hope Pluvicto works.
hang in there. Far from perfect but pain is reduced and sleep is improving. Is your upcoming treatment at Moffitt Tampa?
see how the treatment goes.
Not what you're looking for?
You may also like...
pluvicto
had 2 Pluvicto infusions - after PSA going up, it came down after second infusion.
Have any of...
Pluvicto
Does anyone have any experience with this drug? Relative is in his 70s and has bone metastases in...
pluvicto?
any feed back about the befits of Pluvicto? Is it a miracle drug? Andy Taylor from Duran Duran...
Pluvicto
vacation ? Cancel Christmas ? And wait till January 5? Anyone have any thoughts about this?
Enzalutamide and Pluvicto
doesn’t really add that much benefit.
I would appreciate your thoughts, opinions, and any relevant...
Pluvicto and vomiting
Docetaxil first, then Pluvicto or Pluvicto first
Attention Pluvicto Veterans!
Trials for alternatives to Pluvicto?
Starting pluvicto in another month
