Hi All.
Last Tuesday, 28 May, I had my fourth infusion of Pluvicto. Did okay during isolation. Friday I went to an appointment and then did a little swimming. Saturday and today I have felt SO fatigued. Saturday night I slept 10 hours. Today (Sunday) I am SO tired my head is swimming. All I have done today is sit on my ass, made an omelette, washed some dishes and back on my ass. Is this normal? Am I being too hard on myself?
Thanks gents!
Do You know If You have any Germline or Genectic Mutations?
I’m curious as to why you ask everyone the same question?
Because I noticed men with genome mutations don’t do as well, Germline not so sure…yet, but I haven’t seen this addressed At All with Pluvicto Lu 177 why hyper or hypo progression happens in men with mutations
I know there’s one mutation. I have had genetic testing done twice. When you have had this disease as long as I have, 19 years, one tends to forget the minutiae associated with it. Even though PCa runs in both sides of the family I know there are no BRCA1 or BRCA2 mutations.
I believe treatment can cause genomic changes, but that can only be found by doing genetic testing, might be worth asking for it..,
You have been dealing with this 19 years, wonderful news on your success.
Have you had any scans after pkuvicto?
Yes. Three weeks ago, prior to my fourth infusion. That is the standard. It’s working. Detailed in a prior post.
It is normal for Pluvicto to cause fatigue, more with increasing infusions. How's your bloodwork?
Hey Allen,
I am slightly anemic, other than that most of my bloodwork is good.
Yeah, it can do a number on RBC production.
Yes, just like docetaxel. My docs monitor me very closely. If I need iron, it’s given to me.
Iron won't help. A transfusion might if the RBC count doesn't increase on its own.
Thanks. I will keep it in mind.
Tall_Allen, I have been following you for so many years I have lost track. I have been in stage 4 for over 10 years and have tried most everything that is out there. I'm on my 5th infusion of Pluvicto and it has dropped my PSA level from over 3000 down to under 600. You always seem to have all the answers. Have you spent your lifetime in the Medical field? Just curious.
Where do I go next? I'm in Seattle and use Seattle Cancer Care Alliance/ Fred Hutch/U of W.
Evan Yu there is really good.
Have you done any genomic tests?
My background in biochemistry, statistics, and research methods help me understand a lot.
You forgot to mention you steal my stuff. Including my two books, Thaw's Hammer and Joan of Quebec. You even stole my pen name Allen Edel.
Good Luck, Good Health and Good Humor.
j-o-h-n
I too completed 6 Pluvicto infusions about a year and a half ago. Yes, fatigue was the most noticeable factor. Emotional fatigue as well. I forced myself to take hikes in the woods and even started a rowing routine. It helped a lot. I also cut carbs and lost about 25 pounds. Best of luck to you!
You ARE being too hard on yourself and you are doing great! For many of us, Pluvicto is not a minimal side-effect treatment. It beat me up... a lot...and with fatigue that persisted even months after treatment.
Again: You are doing great; keep it up. As long as your bloodwork is okay (i.e., without concerning anemia, etc.), just treat this like any other chemotherapy and work through with your chosen diet, rest, and exercise routines.
I hate to do this...sorta...but since it's still one of my grown daughter's favorite movies....(shrug)... Good luck. - Joe M.
youtu.be/0Hkn-LSh7es?si=gcC...
My husband had 5 pluvicto treatments and he wishes he didn't have the 5th one. The last one made him really fatigued, not being able to taste any food and he hardly got out of bed. That was on Marcth 19th and his taste buds still have not improved. Make sure the treatments are doing more good than harm.
I don't know because I never tried Pluvicto (yet). You can consider asking for Provigil, a medication that has helped me for 2 to 3 years with fatigue. YMMV but it's been working well for me.
Yes, being too hard on yourself. My hubby got increasingly fatigued as the 6 treatments progressed. Bare with it as its probably doing its job. Just don't push yourself as you want to be able to stay on track for the remainder of treatments. Depleted energy big time! But it will come back. Every cancer fighting drug has it's drawbacks but remember what it's doing. Good luck on your journey.
I know what you mean. I had my 5th infusion a little over a week ago and although I feel pretty good my fatigue level has soared. Like you I have been mostly been sitting. Working on my computer stuff is exhausting, mind activity takes it out of me. My head has been swimming like yours, have to hold onto things to keep from falling down.
Sounds like me, and I haven't even had Pluvicto.
Don't fret.....We are here to cover your back..... (sorry but the front is up to you). Balance is gone..... and I had terrific balance. Legs I could walk for miles and miles, now I have trouble walking a city block. Tired of being tired. Taste buds are sort of kaput. Gave up pulling the pudding long time ago. Climbing 13 steps convinces me that one day those steps will get me. So what's left? Trying to make people laugh. Cause if they laugh it makes me laugh. If you're ever depressed and want to hear a lot of bullshit from an old guy like me, just message me and I'll call you (all free of charge). So take it one minute at a time and try to laugh.....
Good Luck, Good Health and Good Humor.
j-o-h-n
Pluvicto
pluvicto + docetaxel 
Screening for Pluvicto
Enzalutamide and Pluvicto
Pluvicto and vomiting
