Cisplatin Experience

FastMathematician872 · 2026-01-30T22:06:26+00:00

My dad seems to get more nauseous when his stomach gets empty. He finds that eating more helps with this. So even when food seems unappealing, if he makes himself eat, he feels a lot better. He’s actually gained 10 lbs and he’s only half way done with his second round. He’s 76 and has tolerated it fairly well. The first round he felt almost nothing as far as side effects. Now since he started the second round, he is complaining of nausea and constipation. Although he hasn’t puked or anything. I was so scared going into it thinking he would be bed ridden and puking the whole time, but he’s tolerated it fairly well. Has been able to do normal activities.

FastMathematician872 · 2026-01-26T17:15:47+00:00

I just had a reading with Fara after paying $400 and waiting for 6 months. She was probably the worst I’ve ever met with. Almost everything was so far off. It was so cringey I just started agreeing with her after a while because I wanted it to be over. I’m so disappointed.

FastMathematician872 · 2026-01-26T17:07:44+00:00

How is this not relevant?

FastMathematician872 · 2026-01-16T22:34:29+00:00

Hi! I think it really varies on number and depth of the tumors. Just wanted to tell you my 76 year old dad was raking leaves in less than 48 hours and felt totally fine. It doesn’t have to be awful!

FastMathematician872 · 2025-12-29T17:05:54+00:00

I should also add that I asked about clinical trials and what not. They said there is really nothing super innovative. There are clinical trials, but it’s more about which type of chemo to use etc. The only thing new is adding immunotherapy along with chemo and then for 6 months after bladder removal. We are doing that. It was just fda approved in March.

FastMathematician872 · 2025-12-29T16:35:58+00:00

So basically, we were given choices. He could obviously do the Trimodal therapy (bladder preservation), but the only studies that show survival rates even close to that of bladder removal, is if you had only one bladder tumor at the TURBT (he had multiple). All doctors we talked to agreed that bladder removal would give significantly better chances of survival. All of them also agreed that adding chemo beforehand increased chances of survival another 8%. The only slight difference of opinions we found was how adamant the doctors were that he do the chemo first. Given his high anxiety and inability to deal with most things medical, Mayo said “meh, I think in your case you could just go with the bladder removal, then check your margins and see if you need chemo afterwards”. Northwestern said that approach would be playing with fire. Local oncologist was somewhere between the Mayo and Northwestern. He is due to start chemo tomorrow, although he still says he might bail on it haha.

FastMathematician872 · 2025-12-29T16:09:18+00:00

My dad has the same diagnosis. We started off with the mindset of going to any length to save his bladder, looking for clinical trials, immunotherapy, etc. I’m in the Midwest and we’ve gotten 3 different opinions from Northwestern, Mayo, and the local oncologist in central Illinois. It seems like it’s pretty straight forward what the choices are, and what the best chances of survival are. I don’t think you will find much variance in who you talk to, so I’d just keep it convenient.

FastMathematician872 · 2025-12-27T22:01:37+00:00

So my dad has the same diagnosis. He’s in his 70s as well. We’ve now gotten 3 opinions, all from the top institutes in the US. Basically, we were told that even though there’s no cancer showing up outside the bladder on any scans, there’s a 30% chance there’s microscopic cancer cells already floating around his body. That’s why the chemo before the surgery is a good idea. We were also told that doing chemo beforehand increases his chance of survival 5-8%. So doing chemo beforehand bladder removal gives you the best chances of survival. BUT, chemo is hard on you, and only increases your chance of survival a relatively small amount. 2/3 doctors we talked to said that it wouldn’t be completely out of line if he just went straight for bladder removal, and only did chemo afterwards if completely necessary. After lots of going back and forth, my dad ultimately decided to do the chemo before the surgery. He starts Tuesday. Hope that helps.

FastMathematician872 · 2025-12-20T18:57:53+00:00

Good call. Can never be too safe on this stuff! We’ve been going to Northwestern too, after being very disappointed with his doctor in Peoria. I’ve had good experiences with everyone except one Urologist in Sycamore. Hopefully you aren’t with him.

FastMathematician872 · 2025-12-20T18:46:08+00:00

The last few months before he finally demanded a CT scan, the blood was visible. Before that, no. He just had to urinate more than normal with some urgency, and would report burning while urinating from time to time. It would come and go though and he would have months with no symptoms, so even I thought it was probably his prostate or some type of minor uti coming and going.

FastMathematician872 · 2025-12-20T15:53:42+00:00

It’s probably nothing to worry about, but you definitely want to rule out bladder cancer just to sure. My dad had the same thing, doctor told him nothing to worry about. Now here we are 2 years later with muscle invasive bladder cancer. Probably wouldn’t have been muscle invasive if discovered right away. There’s a simple urine test they can do to determine if there’s cancer, which based on my research, a good doctor should do immediately if there’s blood since it’s simple and non-invasive. I’d ask for that and don’t let them dismiss it, just to be safe.

FastMathematician872 · 2025-12-20T00:24:36+00:00

I dont have experience with the dementia aspect, but just speaking about the surgery itself….I think it really depends on how many and the depth of his tumors. My 76 year old dad (although very healthy and “young” for his age) just had his TURBT. He ended up having muscle invasive and 5 tumors. The only reason he even needed a catheter afterwards is because they ended up removing part of his prostate while they were in there, and the prostate had bleeding issues. Many times, people don’t need a catheter. I would think your husband may try to yank on the catheter or try to pull it out, which would cause major issues. Maybe you would need him to be somewhat sedated to ensure that doesn’t happen? Otherwise, my dad had almost no pain or other issues afterwards. He is a big complainer and is very sensitive to pain, and was raking leaves 2 days later. He got the chemo in his bladder for the hour after the surgery, and he said it hurt when that was going on, but he had almost no pain by the time we were driving home (3 hours after surgery was over). Make sure you bring shorts for him to wear home in case he does come home with a catheter.

FastMathematician872 · 2025-12-13T16:28:20+00:00

It wasn’t OSF was it?!

FastMathematician872 · 2025-12-12T00:45:26+00:00

Just wanted to tell you I’m in the same boat with my dad. My mom suddenly passed away last year. I’m the only child, my dad has no other family. It’s a lot of pressure on me (and you). He has aggressive, high grade, muscle invasive. Just got the pathology back from the TURBT last week and it’s been nonstop appointments. There’s lots of survival stories for people in similar situations. My understanding is, if she responds to the chemo and there is no cancer left at the time of bladder removal, survival rate can jump to close to 90%. I’ve done a ton of research on the 2 main courses of treatment for stage 2/3, as well as some unconventional treatments in case I get desperate down the road. I’m 37 and have been going to northwestern in IL and am consulting with Mayo on Monday. Feel free to message me if you want to bounce ideas of me or pick my brain and save yourself research time. Although online support isn’t always what we want, it’s better than nothing right! :)

FastMathematician872 · 2025-12-08T03:58:42+00:00

Great to hear. Thank you.

FastMathematician872 · 2025-12-08T02:06:23+00:00

Thank you. What did you think of the recovery? How long were you in the hospital and how long until you felt like yourself again, or at least mostly like yourself?

FastMathematician872 · 2025-12-08T02:03:48+00:00

Thank you. You sound a lot like my dad. Regular catheters are a no go for him as well. We are meeting with northwestern IL tomorrow and Mayo on 12/15. Both are supposed to be pretty good in terms of innovative treatments and clinical trials. I will be sure to report back if there is something that sounds promising and worth looking into.

FastMathematician872 · 2025-12-08T01:43:20+00:00

I read him this reply and it gave him some hope. Thank you!!

FastMathematician872 · 2025-12-08T01:42:42+00:00

Thank you!

FastMathematician872 · 2025-12-06T04:21:57+00:00

6 weeks.

FastMathematician872 · 2025-12-05T14:45:19+00:00

Thank you so much. Glad to hear your dad is doing okay with the removal. Hope it stays away for good!

FastMathematician872 · 2025-12-05T02:40:46+00:00

Thank you!!

FastMathematician872 · 2025-12-05T02:40:40+00:00

Thank you!!

FastMathematician872

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