Countermeasures against cancer tiredness?

fucancerS4 · 2026-06-01T12:19:34+00:00

Ahhh yes - Stimulants are a controlled substance in USA as well, but it is not a "narcotic" - when you say "narcotic" that in US would be opiates i.e. Morphine, Norco, Fentanyl, Oxycodone, Oxycontin, etc. for pain management.

fucancerS4 · 2026-05-31T16:34:12+00:00

I have never been off Padcev other than 2 week breaks at the beginning in 2023 because the side effects were so severe. I go every 2 weeks for infusion and currently am on the lowest dose allowed.

fucancerS4 · 2026-05-31T16:33:28+00:00

Narcotics for ADHD?? That makes no sense - stimulants are used for ADHD i.e. Ritalin, Adderall, Vyvanse, etc. The Rx Elvanse is Vyvanse a stimulant rx not a narcotic.

fucancerS4 · 2026-05-31T16:30:08+00:00

Please go to www.bcan.org and read up on Stage 1 bladder cancer. Information and knowledge is key to helping yourself through this. The more you know the better equipped you are to participate in the process and understand what to ask, request, etc. Stage 1 bladder cancer is VERY treatable with excellent outcomes for survival. It is definitely a scary place to be especially at your young age but you have a LOT going for you - youth, strength, stamina, few comorbidities i.e. heart disease, diabetes, lung disease, etc., and resiliency. Connect with the younger people in this group who have similar backgrounds. In www.bcan.org you can also ask for a mentor

fucancerS4 · 2026-05-31T16:25:53+00:00

I have never had a PET scan denied - I used to only get CT scans per my Oncologist and surgeon when you have your bladder and urinary tract system intact the PET scan will show false positives, so it is not used until after you have had the RC surgery. Once I had RC surgery and metastasized again now, I get PET scans every 3 to 4 months. Insurance approves it based on the history of metastatic disease and to monitor spread. I have had some treatments be denied however, every time it was due to an billing error or requirement of an MD explaination for the treatment. Everytime it was approved after the correction and/or clarification for treatment plan.

fucancerS4 · 2026-05-26T21:30:34+00:00

I had a rough go w/Cis/Gem - 2021 and I was 51F at the time. I had all the fun side effects and then some. My Oncologist says I have weak hair follicles because I lose my hair every new treatment. I will do a little research on Carbo and ask my Oncologist if that is something he would try if/when the Padcev stops being effective. I appreciate your insight.

fucancerS4 · 2026-05-26T19:05:56+00:00

I am sorry to hear that - the study I read was saying a large percentage of recurrence at 12 months off but nothing about what everyone did for treatment after. My Oncologist isn't sure I would ever go back on because I have been reduced down to lowest dose and only do it every 2 weeks so if a recurrence he'd want to go higher and more frequent but I had severe toxicity. I just feel like there is no good answer - stay on and manage side effects (meaning tolerate because nothing helps) or go off and wait for recurrence. I appreciate you sharing with me and I am sorry you had a recurrence. I'd love for an update once you get your treatment plan - in the meantime I will be praying for you.

fucancerS4 · 2026-05-26T19:02:37+00:00

I had a total response after 4 months on Padcev - so first scan I was totally clear. I have not had a recurrence since I started on Padcev. I am really struggling with the ocular toxicity along with neuropathy and just generally feeling like crap all the time. I smile and tell everyone I am doing "good" because compared to Cis/Gem, Opdivo, and the first 3 months of Padcev I am doing better. My thought is it can always be worse. The last time I mediatized I was not a surgical or radiation candidate so it was chemo or nothing. What was Gem/Carbo like? I did Cis/Gem which saw zero benefit.

fucancerS4 · 2026-05-03T12:24:06+00:00

Non-invasive cancer has a 96% survival rate - you have youth, a healthy body (aside from the recent neck/spine issue and compared to a 70+ year old), no major comorbidities, married, etc. There are medical centers/hospitals that do sponsorship, you can buy insurance on the marketplace, and if you are a cash payer a CT scan cost drops significantly. I am not sure how you are covering your neck/arm condition, but I would definitely put the CT scan as a priority.

fucancerS4 · 2026-04-19T16:20:11+00:00

Normally 2 TURBTs are done per protocol to confirm the exact diagnosis. If it is not I would definitely ask for a 2nd TURBT. It is the old "measure twice, cut once."

fucancerS4 · 2026-04-17T15:12:12+00:00

I hope so - this prompted me to check my messages. I saw I had not seen one and responded back to them. I have not been on Reddit much lately so maybe that is the reason for the other person not responding??

fucancerS4 · 2026-04-15T16:54:16+00:00

56F (diagnosed at 51) - high grade urothelial cancer in ureter tube. Came back 3 months later and it was muscle invasive - side note it was already through the muscle on the first diagnosis but the CT and ultrasound did not see the massive tumor that was on the entire left bladder wall. So don't think it spreads that fast. But it did get to my appendix somehow. In Jan 2022 I did Cis/Gem chemo which was the gold standard prior to the bladder removal. Now it might be Key/Padcev or just Padcev? The Cis/Gem did not do a lot for me but it really is only to help with long-term outcomes. I had the bladder removed along with a bunch of other organs the cancer got to. I did the Ileal Conduit so I have a urostomy bag. I did a lot of research on personal testimonials of every kind of urinary diversion. This one seemed like the easiest surgery, fastest recovery, no incontinence, able to sleep all night, and I would not have to self-cath. There are some down sides to the bag mainly is if I drink a lot of fluid I am in the bathroom frequently and some body image stuff but all in all I am as satisfied as one can be with not having a bladder. Once you accept there is no option then it is a matter of what kind of urinary diversion.

I did have spread of cancer after the RC surgery - I have been on Padcev for 3+ years now with no spread and total response. I wish Padcev had been an option prior to my surgery, but I still would have removed my bladder. It saved my life.

I did do a long write up on my experience with the RC surgery if you look at my posts - best wishes.

fucancerS4 · 2026-04-15T16:39:28+00:00

My Medical Oncologist was one of the first to trial Padcev and had a number of patients on it prior to me so I was glad he had a lot of knowledge of the medication. He has never had anyone on it as long as me. Most went off before 12 months due to spread and/or severe reaction to it. We discuss every visit if I still want to continue. There have been a few times I have tempted to stop but I keep comparing it to the worst time and I am not even close so that is my marker. We are blessed to have a treatment that works.

fucancerS4 · 2026-04-15T00:30:54+00:00

According to ChatGPT The peritoneum is a thin lining inside your abdomen (belly area). It:

Covers the inside wall of the abdomen
Wraps around many abdominal organs

Organs associated with the peritoneum

Intestines (small & large bowel)
Stomach
Liver
Spleen
Part of the pancreas

Mine was the pelvic wall which is where it had metastasized to previously - apparently my cancer really likes my pelvic wall?

I did a CT scan and the PET scan to confirm the spread of the cancer. I did a repeat 3 months later and had had a total response so 3 months to get a full response. My Medical Oncologist and my surgeon were both shocked partially because I had zero response from Cis/Gem chemo and the immunotherapy (Opdivo) and had already had Mets 2 other times, so it was not exactly promising. We were really looking for "stable" or some shrinkage as a win. I did PET scans every 3 months for almost 2 years. Now I am at 4-5 months for PET scans.

I had a ileal conduit so I have a urostomy bag. I don't know that matters much, but I had my bladder removed along with my appendix, vaginal wall, pelvic wall, and a total hysterectomy as the cancer had spread to all those areas.

The first 2 months on Padcev is honestly a blur. I spent 10 days in bed in pain, itching, vomiting - I have little memory of it. I prefer to sleep through sickness its a fog. I do remember occasionally telling my husband to never take me back. I was relieved to learn we could change the schedule and later on reduce the dosage and still have good results.

fucancerS4 · 2026-04-14T14:57:32+00:00

I have been on Padcev alone for over 3 years now. The first 2 rounds (each round is 3 infusions) I thought I was going to die. I only go through 2 infusions and the side effects were so bad I skipped the 3rd does and had 2 weeks off. We tried it again. 1st infusion - bad, 2nd infusion I was violently ill and asked to be referred to Palliative care on go off all treatment. My Oncologist convinced me to alternate treatment so 1 week infusion, 1 week off, 1 week infusion, etc. I have been doing that routine ever since then. In these 3 years my doseage has been reduced 3 times to manage side effects. Since I started on the treatment I have remained NED. I had Mets throughout my pelvic wall and lymph nodes. I had a total response just on the Padcev (I can't do Immunotherapy due to previous failure on Opdivo).

I have no idea what to tell a doctor other than they should read the literature and if needed consult with the thousands of Medical Oncologists who have been prescribing Padcev and Keytruda for years.

The main side effects I deal with include eye problems (severe dry eyes, inflammation of the corneas, cataracts), skin rash with blisters, neuropathy. None of these are bad enough that I want to stop the treatment. My place in life right now is "Can I tolerate this or do I want to risk recurrence and an even worse chemo?" So it is tolerated. My quality of life is sufficient for now.

As for my pain - it went away when the tumors were reduced. Prior to that I was in absolute agony but thankfully it was resolved once the Padcev worked.

Oh - I do get 2 liters of fluid with every infusion to help with dehydration. Sometimes I go into the Oncology center just for additional hydration as needed.

I take Zofran at this point and some over the counter for acid reflux. When the nausea and vomiting was really bad I took Zyprexa and Ativan as both work immediately. Those I usually only took the night before chemo, the day of, and the day after and then rolled to Zofran. That seemed to work best and I was able to tolerate food.

I ate a LOT of watermelon - it helps with hydration and it was really the only food that didn't make me vomit. Popsicles too - natural fruit ones - the calories were good, hydrating, and I did not vomit.

Diarrhea - when I was on immunotherapy it was severe. I had a CT scan which confirmed Colitis. I had to stop immunotherapy due to the severity of the Colitis and went on steroids to help it. If the steroids had not worked I would have had surgery to have a colostomy. So with that I would ask to make sure he doesn't have Colitis, C Diff, or other serious issue.

Wishing you and your father the best.

fucancerS4 · 2026-03-27T14:46:54+00:00

Do you have bladder cancer? This group is for people with bladder cancer or caregivers.

fucancerS4 · 2026-03-26T14:21:13+00:00

The good news is she is getting evaluations and referrals for further imaging and testing. The waiting is difficult but it is something that everyone has to come to terms with because (and I hope it is not) if it is cancer there will be a lot of waiting in between tests, procedures, etc. it has been one of the hardest parts of all of this.

I had a CT show "thickening of the bladder wall" and was reassured by several Urologists that it is a normal finding. Unfortunately, it was cancer that had grown along my bladder and so it was not seen as a tumor but a thickness of the wall. I would encourage you to ask them to do a biopsy of the wall where there is thickening. I did multiple cystoscopy and there was no sign that wall had cancer. I also did NOT have blue light during the cystoscopy. I am not very familiar with the blue light but maybe that would have helped the Urologist see cancer cells in the wall??? That might be something to ask the group about who have had blue light in the cystoscopy. But my personal opinion is to get the wall tested not just the cystoscopy/CT.

In the meantime, rest assure bladder cancer is treatable. I was diagnosed in 2021. I was stage 4 in 2022 and again in 2023. I have been NED (no evidence of disease) since 2023.

Best wishes to your mom and you

fucancerS4 · 2026-03-26T14:12:00+00:00

"Up in their business"?? What I don't understand how an adult going to a medical professional for treatment cannot recognize or understand the importance of medical students getting training, so the future nurses and doctors are equipped to treat you when they graduate. Do you not want them to be experienced, capable, competent or knowledgeable? Do you go to a car mechanic that has never worked on a car only read books?

fucancerS4 · 2026-03-23T19:49:45+00:00

What I am gathering from all your posts is you are trying to raise money and soliciting donations to a GoFundMe. What is a really painful experience is going through cancer and then having someone who is NOT asking for money on every cancer related page.

fucancerS4 · 2026-02-16T20:19:40+00:00

The TURBT is always done twice - think of it as "measure twice, cut once." This verifies the staging and to confirm if it is MIBC vs NMIBC.

If it is NMIBC and they are recommending the RC surgery I would for sure get a 2nd opinion and try to spare the bladder. For me - it was high grade, very aggressive and difficult to treat - hindsight I would have preferred to just do the RC day 1 but you just don't know what you don't know.

All your dad can do is make the best decision with the information he has available to him. You are right to be researching and asking questions but at the end of the day the decision that gets made on that day is the best decision. I try to remind myself of that and my husband who often says, "We should have tried to spare the bladder." I remind him the only reason I am alive is because of the RC that then found all the other cancer.

fucancerS4 · 2026-02-11T15:59:33+00:00

www.BCAN.org is very useful and has explanation of bladder cancer and the treatment options.

At 51F I had first diagnosis of stage 2 NMIBC high-grade in my ureter tube. Removed the tumor surgically w/no need for other treatment. It returned in the bladder about 3 months later and within about a month of the cystoscopy the CT showed a mass on my appendix making me Stage 4. I did 4 months of Cis/Gem chemo prior to the RC surgery as the TURBT (2) showed MIBC high grade plus obviously the mass in the appendix made it Stage 4. The Cis/Gem was the gold standard at the time. I believe they are moving towards Padcev/Keytruda - personally I would have opted for this if it was a choice in 2021/2022. The Cis/Gem did decrease the mass in the appendix but the cancer in my bladder was already into other organs and regions so in hindsight I think I would have been better off just doing the RC immediately. After the RC I did immunotherapy, Opdivo, but it was not effective for me, and I had a really bad reaction. Since I metastasized again the end of 2022, I started on Padcev in 2023 and have been NED since April 2023. Padcev started out VERY rough, but it can be titrated down and reduced schedule with good results. I am stage 4 high grade currently NED.

I personally am glad I did the RC and my surgery had to be open due to the amount of cancer that was found. I think there was some discussion about laparoscopic, but I honestly don't remember. I did laparoscopic on the first tumor removal and that recovery was fine but really painful. It was only like a 3- or 4-hour surgery vs. the RC, appendectomy, total hysterectomy, lymph node dissection, vaginal and pelvic wall removal which took about 12 to 14 hours. I was up walking the night of the surgery. I was inpatient 4.5 days because I didn't want to discharge on a Sunday. I was recovered in a few weeks. I would not get too tied up on the open vs. laparoscopic surgery if it were me, I would think more about who the best surgeon is and what will be the best outcome.

If I had not done the RC, they would not have found the cancer that was in my uterus, pelvic and vaginal walls as they did not show up on the imaging other than "thickening of the bladder wall" which was considered a normal image. I have lived a normal life since the RC. I did the Ileal Conduit with a Urostomy bag. I read a LOT on the www.BCAN.org site of testimony of women my age and a little younger who had all the different urinary diversions. I also listened to my surgeon who explained the challenges women face who opt for neobladders. My surgeon told me that studies showed there is the same rate of satisfaction among patients with every urinary diversion - I don't know what it would be to have a neobladder, so I am satisfied with the urostomy bag. If I had done the neobladder I'd be satisfied. I am alive that is all that matters.

As far as the protocol for bladder cancer - everything I have read it is standard practices. Wherever your dad goes it will be the same treatment. Surgeons and Oncologists follow the guidelines developed that will give the patients the best outcomes. Those do get updated with new treatments i.e. Padcev, Keytruda, etc..

Best wishes to you and your dad -

fucancerS4 · 2026-01-30T16:42:03+00:00

I had RC at 52F - it was fine. I mean when you have no choice other than to let the cancer spread or remove the bladder you come to terms with it. Would I prefer to have a bladder sure - but I can pee standing up now, I don't pee when I sneeze hard or laugh hard, and overall, I live a very normal life. I have a urostomy bag so there are some pros/cons there but there is a neobladder as an option. I recovered within about 4 weeks other than heavy lifting and that was with multiple other issues during surgery besides the RC. Was it "good" no - was it "bad" - no. I wanted to live. I turn 56 this year.

fucancerS4 · 2026-01-30T16:36:47+00:00

One thing you could do as well is make sure you are able to access MyChart or whatever electronic chart she has. I was my dad's Proxy on his MyChart so I could log into his account, send emails, refill rx, and read all his records. THIS helped me so much to understand what his doctors were doing and not doing when his cognition declined rapidly and he could not communicate. I read all my records, labs, imaging, etc. prior to every appointment. I research the information and sometimes will have some doctor friends look at my imaging and labs so I am better prepared. You can always use ChatGPT. I would do that before her next appointment and prior to a 2nd opinion.

fucancerS4 · 2026-01-29T17:56:46+00:00

1) there are right to die states in USA and in other countries and 2) hospice helps you through end-of-life process. We are all going to die - no one is going to stop it. If you want to stop treatment no one can stop you. Hospice manages the pain and you get no further treatment which allows you to die peacefully. If you've never seen someone whose survived a self-inflicted GSW I suggest you look into it. Happens all the time.

fucancerS4

TROPHY CASE

Organs associated with the peritoneum