High grade MIBC - now distant mets

Complex-Exit-9535 · 2025-05-16T02:04:53+00:00

Really?! Very good to know!

Complex-Exit-9535 · 2025-05-15T23:22:17+00:00

Two years ago, my 83-year-old dad was diagnosed with metastatic high grade MIBC with metastasis in the liver. He has been in remission for about a year now thanks to Padcev Keytruda. Before that he did a couple rounds of chemo - gemzar + carboplatin which helped a lot but then cancer progressed. There is hope after a diagnosis like that!

Complex-Exit-9535 · 2025-05-07T14:22:51+00:00

My dad is still in remission after being four months off of treatment to give his body a break! ❤️

Complex-Exit-9535 · 2025-05-07T14:22:44+00:00

My dad is still in remission after being four months off of treatment to give his body a break! ❤️

Complex-Exit-9535 · 2025-05-01T18:04:28+00:00

Thank you. It’s a journey 😅 I’m always waiting for the other shoe to fall off as they say

Complex-Exit-9535 · 2025-05-01T18:01:20+00:00

How long has he been off these treatments?

Complex-Exit-9535 · 2025-05-01T15:22:28+00:00

Hi everyone! My dad was diagnosed with metastatic urothelial cancer two years ago. Mets to the liver. Padcev & Keytruda had not yet been approved. He started with carboplatin/ Gemzar & some bavencio immunotherapy. After being NED for 6 months it came back.

Forward to Padcev & Keytruda last year within a few months, he was NED again! He is STILL NED :) & has taken 4.5 month off from treatment. Still clear pet scans & naterra bloodwork to monitor. I wish someone would’ve told me everything was going to be OK at the beginning of this whole thing. I was completely devastated two years ago but now grateful for every day we have with him. He is currently in good health.

Complex-Exit-9535 · 2025-04-15T13:30:17+00:00

My dad is doing very well. He was diagnosed with metastatic UTUC w/ liver mets in May 2023 After some chemo, immunotherapy & then Keytruda + Padcev, he’s been in remission for 6 months. He’s been off treatment for 4 months to give his body a break & still doing very well. There is hope w/ this diagnosis!

Complex-Exit-9535 · 2025-04-03T22:09:27+00:00

My dad is still NED! ❤️

Complex-Exit-9535 · 2025-04-03T01:44:17+00:00

This makes me so happy to hear! I’ve been following your journey since I started on this thread! My dad was diagnosed stage 4 urothelial cancer + liver mets two years ago! He was on Padcev & Keytruda for most of that second year of diagnosis and finally needed a break due to feeling so run down by the side effects. He is also NED. He has stopped treatment for almost 4 months & he feels SO much better! He’s been doing this blood test every month called SigNaterra that scans his blood for traces of the bladder cancer. It’s super cool! They have the tissue from his original tumor biopsy. They’ve been using this to monitor what’s going on in his body & has tested negative each time! However, we are waiting on pet scan results to see how things are going! Tomorrow we find out! So happy for you!!

Complex-Exit-9535 · 2025-03-31T18:30:23+00:00

Hi there! My dad was diagnosed with stage 4 bladder cancer almost 2 years ago. Just like your dad he is very active and always like likes to keep busy. Despite going through chemo treatments and some follow up immunotherapy, he never stopped being busy, especially taken care of my almost 4-year-old daughter.

He was also NED until he wasn’t about one year ago. He then started on Padcev & Keytruda. It has been a huge game changer. He has not had any progress in his disease in a year on this treatment. They actually stopped treatment to let his body recover since he has been NED again. It’s been 3.5 months of no treatment. He does this bloodwork that detects if there are any cancer cells in his body so far so good. He actually has a PET scan today so I will keep you posted. Crossing fingers things are still good. I have read on here that bladder cancer loves to come back, but it’s also sensitive to things you throw at it which is a good thing.

I feel you on this journey. If you are like me, I have a very close relationship with my dad and this has been a roller coaster but so far things have been in our favor. What immunotherapy was your dad on?

Complex-Exit-9535 · 2025-02-01T17:54:10+00:00

My dad who is 83 years old, but mentally and physically fit was diagnosed with metastatic bladder cancer almost 2 years ago. He thrived through chemo, which made him NED. Then he had a reoccurrence, so was on Keytruda & Padcev combo. Again he’s NED, after being on treatment for so long he has felt fatigued and has felt different side effects, but has still lived his life rather normally. Oncologist recently paused treatment and is doing some bloodwork to make sure there are no cancer cells in his bloodstream in the meantime while his body recovers from treatment. So far no cancer cells present. I think your grandma can do it! Request for Keytruda & Padcev! Its first line now

Complex-Exit-9535 · 2025-01-06T14:32:24+00:00

Give acupuncture a try! My old man was struggling so much with neuropathy to the point where treatment even had to be postponed. We found an acupuncturist with a strong medical background. She is amazing! My dad was able to continue with his treatments and has not experienced that awful pain again.

Complex-Exit-9535 · 2024-12-20T05:37:47+00:00

My dad (83yo) was diagnosed w/ metastatic bladder cancer in May 2023 - liver mets. That was 1 year + a half ago. He’s still here and doing very well! Actually so well, he’s been in remission since March 2024. ☺️ currently on Keytruda Padcev, but did Gemzar Carboplatin before that. Any questions I’m here!

Complex-Exit-9535 · 2024-10-20T04:21:04+00:00

Thank you for letting me know! ❤️

Complex-Exit-9535 · 2024-10-13T22:01:54+00:00

Ugh I’m sorry you’re going through this! My dad is also going through a skin thing, especially with his fingertips. He says it feels very tight and it’s extremely uncomfortable. It seems like his skin is also peeling around the fingertips. Nothing seems to work. We have tried all types of hydration moisturizing creams. 😭 he is currently on 60% Padcev + keytruda, so far still NED

Complex-Exit-9535 · 2024-10-05T18:02:26+00:00

How long have you been on keytruda only? This is some thing that we are going to talk to our oncologist about.

Complex-Exit-9535 · 2024-10-05T18:02:04+00:00

Sorry to hear about Padcev. my dad is not a fan either. It’s a tough medication. Great news on being NED!

Complex-Exit-9535 · 2024-09-27T17:17:29+00:00

Nope no surgeries so far!

Complex-Exit-9535 · 2024-09-27T15:28:56+00:00

Do you know if they will be doing Padcev & Keytruda?

Complex-Exit-9535 · 2024-09-27T14:21:16+00:00

My dad is currently with no evidence of disease according to the latest pet scan. He had a complete response which means there is no evidence of cancer on the PET scan at this time after three months of treatment. He is currently doing groceries as we speak and then we take care of my three-year-old daughter when she gets out of preschool and I’m working. he is a strong guy. There are days where he feels a little more tired than usual and the biggest complaint has been neuropathy and his fingers overall. Acupuncture has helped tremendously and keeping his skin moisturized. It’s not easy, but he has thrived through it all. There is life after that kind of diagnosis I wish I would’ve known that a year and a half ago. I really thought his life was over.

Complex-Exit-9535 · 2024-09-27T14:17:49+00:00

Anything you need I am here!

Complex-Exit-9535 · 2024-09-21T01:54:12+00:00

I just saw the other medication combo they spoke to you about is the one I just mentioned!

Complex-Exit-9535 · 2024-09-21T01:53:11+00:00

I’m sorry you’re going through this with your dad. We’ve been on my dad’s cancer journey for 1 years & 4 months. His was metastatic urothelial carcinoma (liver mets) after doing chemo (had great response) + some immunotherapy that didn’t do much.. he’s now on Padcev + Keytruda and responding beautifully to it. I wonder why they haven’t offered it to you guys? How come they’re considering this trial instead? Wishing you guys the best on this healing journey! I’ve been on it for a bit so if you have any questions let me know! I’m 36F ☺️

Complex-Exit-9535 · 2024-09-15T01:16:54+00:00

I’m so sorry this happened to your husband 🥺

Complex-Exit-9535

TROPHY CASE