I've been so sick from my 2nd dose of pluvicto. ..
The anorectal pain is something I have been fighting with since after the first dose, I think i my have found eating one white rice gives me relief...
Anyone have similar experience?...abdominal pain, dirreaha?
I dont know Dean but glad to see you still kicking at all. I hope you get some input from the group. Has your MO had any input as to cause and or way to mitigate it?
I've heard of SE of diarrhea but not of rectal pain.
I too have rectal pain. I first shared this with my urologist and his reply was that it must in my head as most patients can not feel any pain. Then I shared this same pain with my RO. He thought it was proctitis resulting from my TR biopsy. In late November, I received my HDBT in a single session from same RO. Two weeks later I started my 25 sessions of IMRT to whole pelvis. As of today, I still have pain. It is discomforting but not so intense that I need medication. However, even though I have responded nicely to my first 6 mo Lupron dose, I am concerned that my primary treatment failed. While the rectal pain is not intense, it is slowly increasing as time moves on. My first follow up with my RO is in early April.
Have you had a PSMA scan lately? My husband’s center had him get one immediately prior to his 3rd dose to monitor progress. How has your PSA been trending?
Yes, and no. I've just had my 4th Pluvicto and, like you, this Pluvicto journey has not been as advertised in terms of side effects. My entire body is often clenched into debilitating achiness, like I played a football game or rugby match the day before. I fight to keep my bowels moving normally, swinging between slurry and, well, rock. Since my liver numbers were going up, I also have trimmed every pain reliever and supplement entirely or back to bare minimum. That seemed to have worked, as my labs last week were all normal, except for a bit of anemia.
Thoughts:
1. Are your blood labs normal? If not, find someone with some possible treatment pathways, because your body systems are under measurable stress.
2. Oatmeal and flax seed are my GI pals. Not as much as they used to be since Pluvicto, but they help. They bulk out the bowel slurry and seem to loosen the bowel rocks.
3. If you are on a pain relief regimen, try modifying it. I dumped Tylenol, since it is not an anti-inflammatory like an NSAID. Since NSAIDs are an absolute enemy to my GI tract, I take low-dose chewable aspirin throughout the day.
4. This is weird, but try diphenhydramine (Benadryl). My doctors cannot tell me why it works (or if they even believe it works) for me, but it does. But since it appears to allow my 54 year-old bulk to get up from a chair, I've just added Benadryl to my routine whether or not I'm feeling something. I do fully understand that one would think that, if I am allergic to Pluvicto, I would be full-blown nasty allergic and intolerant of it entirely.
5. As leebeth says, find out if Pluvicto is working with a follow-up PSMA scan. No need to continue the torture if this is ineffective.
Good luck. - Joe M.
That’s exactly what’s I’m experiencing. I’m in so much pain with this bowel, abdomen rectal pain, the feeling like I have to poop every minute has been with my since day one of my first treatment.
So my cancer has morphed into very rare form of prostate cancer called scarcomatiod carcinoma of the prostate. Less than 100 cases in WORLD so I was told
I’m in hospice and have stopped all my opiate medications, but use cannabis because I wanted to have a fighting chance.
But the side effects of pluvicto are way more severe than they tell you.
I laid in a bath tub vomiting and pooping myself after each dose for 8 hours. Because no one’s allowed to touch you. Pluvicto side effects has been hardest part of my journey.
I don’t think I want to 3rd dose
It goes without saying, but I'm so sorry, Dean. Hitting the jackpot on rare cancers is just horrible. At least my follow-up PSMA scan is showing some benefit.
The loneliness, helplessness, and the utter desolation of not only being in pain, but having no real GI control, resonates with me. It doesn't help, but I understand completely. Maybe you and I could get one of those side-by-side tubs you see in the beautiful commercials! Let's look out at the sunset over the sea and share our humiliating misery.
With the help of my increasingly-needed walking stick, I was able to take a short nature walk this morning. There is a memorial bench that I took a rest on, and there are two lines on it:
The first line reads: Maktub - "It is written". Maktub is an arabic word which literally means it is written, but is associated in context with fate or destiny. Obviously it implies that, if we accept our fate, life becomes easier to understand and we can find peace. Beautiful.
The second line reads: "Well, sh*t." Apparently this is the quote from the woman that the bench is dedicated to.
It says it all. I'll be back to that bench, for sure. Thoughts and prayers, brother!
beautiful words … thank you for sharing. Peace be with you. I am going looking for my tub
I didn't quite follow the part about one white rice. Could you please explain that a bit further? Thanks
found eating one white rice gives me relief...sorry I’m not the best on this phone.
I meant I found eating one cup of white rice cooked really well really help. I stopped eating for 2 days because I couldn’t stay out of bathroom… so one cup of what rice has really helped
with Babies, they call it the BRAT Diet. Banana’s , Rice, Apples, Toast. It may work for you if you are still having issues? Mike
Hey,
You guys are taking the fun out of Pca........Hey Mr. Bigshot up there, how about giving these guys a fucking break.....They don't deserve what they're going through...... cause they (we) never asked to have prostates anyway. Would have been better if you gave us second dicks....
Enough said, now I think I'll say my nightly prayers and go to bed............
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 03/05/2023 11:09 PM EST
Oat bran added to the mix, TITG! Thanks for the advice. As for relief, as of Friday I have 4 of 6 Pluvicto on board and, since it feels like football or rugby, I'm just treating it like a athletic season - moving through the discomfort and looking to the end (May 26 is the last infusion + one month to start feeling better)! I'm looking forward to - hopefully - a peaceful summer.
How has your last infusion come along…
Hey, Nfler! Thanks for checking in! My pre-infusion labs were good enough for the go-ahead on my final Pluvicto last Friday. And I am glad to see the end of it - I feel as miserable as ever on this stuff...I mean, it's chemo, no matter the semantics. I have 3 scans in mid June: PSMA PET, Bone PET, and MRI to see how it performed. I am hoping that, by early August, I will see some QoL improvement my body recovers.
Glad you got thru it n had no idea the se’s can b that bad. Hopefully it works well n they don’t find anything on the scans… good luck 😊
Hi! My dad just had his second pluvicto last week, and while his labs look ok, he feels weak and his body aches. Our general experience is that pain is an indication that treatment is not working (at least thats how he felt when chemo failed), but from what I understand you are responding well to pluvicto, and you have also experienced some pain and aches? I don’t really understand why pluvicto would cause pain if its working, but i am certainly hoping that is the case! 
Now that's really funny.....I bet when I tell that one to the ladies at the Sunday communion tea they're going to howl with laughter.....
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 03/06/2023 3:59 PM EST
Non standard Firmagon dosing effective for 3 months from single injection.
Oh Happy Day - 3rd granddaughter today and PSA dropped 💙
Taxotere causing horrible neuropathy on just the 3rd day. 
Prednizone Dose \"Survey\"- 5mg vs 10mg per day
Husband had RP 3 days ago.
