I am to start participating in a Lutetium trial and will receive my first dose of that drug in three days.Will any of you who have taken Lutetium please respond with your experience as to immediate and long term side effects and anything you did to minimize them?
Lutetium side effects: I am to start... - Advanced Prostate...
Lutetium side effects
Xerostomia (dry mouth) is a common side effect. If it is bad, there is a procedure they can do called sialendoscopy, where they dilate your salivary glands. Of course, avoid all supplements.
Thanks , Tall Allen. Your advice is always respected by all. My Dr has not mentioned the possibility of a salivary procedure or leaving off supplements. Do you mean vitamins also or herbal products. My doctor also has reviewed my list of meds and has no problem with it. Almost all that some would consider supplements are vitamins.
The sialendoscopy is only if you have a problem. They found that ice packs were useless. Anything called an antioxidant or free radical absorber counters its effectiveness. Many vitamins and minerals are sold in chelated form for better absorption - they may un-chelate the Lu-177 from the ligand to which it is chelated. Just stop all of it for a few weeks. You can go back to it afterwards if you so desire.
I had Lu 177 PSMA treatment in 2016. The side effects were : some fatigue lasting about 12 hours and some abdominal discomfort. I did not develop Xerostomia. They made apply cold packs to the slaivary glands before, during and about 8 hours after the infusion. They asked me t o suck on lemon mints for a couple of days. The xerostomia is frequent in people treated with Actinium 225.
Patients with large amount of bone metastases may have bone marrow problems with both therapies, Lu 177 PSMA and Ac 225 PSMA.
It tends to collect in your salivary glands and kidneys and do damage there.
You really need a serious discussion with your docs about how to minimize damage. If you lose your salivary glands you are really really really screwed.
I have heard chewing on slippery elm helps the salivary glands. And ice helps kidneys and salivary glands.
"If you lose your salivary glands you are really really really screwed."
Oh shit... there goes my chocolate chip ice cream (two scoops)....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 04/02/2019 7:30 PM EDT
My husband has had 2 Lut-177 treatments and has had no side effects. They gave him an ice pack to place on his jaw. He has continued his supplements with Dr.s approval, just being careful of antioxidants. He has had great results from the treatment. Improved PSA and scans. Best wishes for you on your treatment.
So, any updates?
I haven't had any side effects from my Pluvicto treatments and it's working for me. As they say, beats the alternative.
Just ignore negative comments from people who don't need treatments like this to stay alive. Certain people here like to criticize the standard of care.