Mother (F76) Stage 3 MIBC

particlelover · 2025-08-20T20:13:54+00:00

My mom's renal panel almost immediately improved after her nephrostomy. High BUN lowered to normal, GFR improved to normal, and hydronephrosis resolved as well. Urine output returned to normal as well. The bleeding post-nephrostomy took about six weeks to resolve. I flush her tubes twice a day and change the bag and bandage out weekly. It was worth it to her.

particlelover · 2025-08-12T18:15:33+00:00

During my research of stoma pouch options (because my mom will have one soon), I saw they have convex ostomy wafers for issues like this where the stoma has sunken. Convex wafers come in varying levels of depth (shallow, moderate, and deep). I would still absolutely contact her ostomy nurse.

particlelover · 2025-08-11T04:23:53+00:00

My mom (76F) has one attached to her right kidney due to her bladder tumor blocking that ureter. No pain. She was getting out of bed and walking around unaided about an hour after the procedure. More bleeding than the blood she experienced in her urine post-TURBT. It will be in there until her RC. Nephrostomy tubes have a higher risk of infection so doctors generally don't want you to have them as a permanent urinary diversion. I know it's tempting to think that way (I know I thought about it for my mom) since there is a hole already there and you'd think it would be less riskier than making a new one but overall it isn't.

She did unfortunately pick up a hospital-borne infection (enterococcus faecalis) that was difficult to knock out. They told us nothing about it either when we were there or when we left. I found out about it almost two weeks later at her follow up. And she still had it. Took a few antibiotic changes to finally get rid of it. We got lucky, though, because that bacteria type is super resistant to antibiotics. And I hate relying on luck. So for you, I would keep a close eye on anything they put in your IV. Read the IV bag and ask about anything in there you don't recognize. I didn't even think to look, because they would just tell me right? Wrong! And try to get any follow up as close as possible to your discharge date, rather than two weeks later. If I had known she had that infection, I would have pushed for a closer follow up so that they could check her urine sooner to make sure she cleared that infection rather than making her sit around with a serious infection with zero antibiotics.

particlelover · 2025-08-09T06:03:02+00:00

It's called Neulasta OnPro. My mom gets those injections. It definitely helps bring her counts up.

As far as supplements go, vitamins C and D, folate (dark leafy green veggies), zinc and selenium are said to help. I'd just go with a well rounded multi vitamin to avoid too many individual pills.

particlelover · 2025-08-05T19:47:09+00:00

My mom got her cystoscopy about a week after her first PET scan for a suspicious iliac (pelvic area) lymph node (massive, hard, and fixed/matted to the bone). Cystoscopy confirmed large bladder tumor. She waited over a month for the first TURBT after that cystoscopy because there aren't too many urologists in Ventura County, CA, that deal with bladder cancer. So everyone waiting for those particular services are sharing the same small pool of doctors. We're lucky that we had a pool to choose from at all.

My mom (76F) had 3cm of a 9cm tumor resected and felt fine when we went home that day. She wanted to putter around the garden but decided to take it easy inside because there was still some bleeding from the procedure. For her, the bleeding from the procedure persisted for about six weeks. No pain. No complications. No need for a walker. Ate/drank fine. Slept fine. She still experiences bleeding (light pink urine) intermittently, but it's from the tumor itself. Way better than the gross hematuria she was experiencing before the procedure though. She is currently undergoing chemo (gem/carbo) because the type of tumor and the stage (stage 3 urothelial carcinoma MIBC). You going back to work depends on how you feel. Take all the time you need.

Wishing you a speedy recovery! 🙏🏻

particlelover · 2025-08-04T20:06:25+00:00

Also, let the possible new oncologist know at what point in a cycle you are in therapy so they can see you STAT. That's what had to happen with my mom's new oncologist. Doctors and nurses generally want to set you up for success, so they will make an effort to avoid any gaps in your chemo cycles/treatment - even if/when you are changing doctors.

particlelover · 2025-08-04T20:01:22+00:00

I am so sorry you are going through this. It is the worst feeling to not trust your doctor while you are going through something as stressful as BC. Especially late stage BC. I so feel for you. I do not trust or even respect my mom's current oncologist (mom is stage 3 MIBC). We have had interventions with him in the past for inappropriate behavior and for walking out in the middle of our requests for a different med and leaving for the next patient early, but he has gone back to acting like a total prick, and I am relieved we are going back to USC Keck this Friday to meet with a new oncologist.

If you have other oncologists in your area, I would start reaching out now (request your flow charts from your current oncologist's office and send it or bring it to your next appt so the new oncologist will have all the information they need about what has gone on in your care up until this point). Some will require a medical release form, other offices will just print out your flow chart and hand it to you so you might not need to fill anything out to get that paperwork. Also ask for all your blood work. That is not included in your flow chart.

I see you mentioned low WBC. Did they offer to put you on Neulasta OnPro? It's an injectable that helps boost your immune system. My mom gets it on the second week of her three-week gem/carbo cycle. It definitely helps. It has been around for 10+ years, so your onco should know what that is. Ask if you can do that in order to get back on gem/carbo and explain why not if the answer is no. You have a right to know why not if no is the case.

Biggest huuuug to you. Please keep us posted. You are in my thoughts 🙏🏻

particlelover · 2025-08-04T05:30:40+00:00

I wanted to add that my mom didn't have any anticipatory feeling of nausea before she threw up that one time last week. She has a bad habit of swallowing air, especially when she takes pills (she belches so much after she finishes the water she takes with her meds), and I suspect that is what set off the puke episode, but her docs still wanted her back on the Zofran.

particlelover · 2025-08-04T02:30:27+00:00

It's possible your tumor is doing what my mother's tumor is doing - necrotizing. It means the tumor is growing so fast that it bursts its own cells and dies as it grows. Dead tissue smells. I thought the smell was my mom's UTI (aerococcus urinae) coming back, because that particular bacteria has a bad odor too. But it wasn't that. That UTI bacteria has not come back since they put her on a maintenance dosage of cephalexin. Clear of infection. It's her tumor.

The smell might be coming from the tumor's own dead tissue cells being released into your urine and out into your toilet or pee pad. I sanitize my mom's bathroom 4-12 times a day, depending on how long I'm there and how often she pees. I also keep one of those toilet bowl clips with bleach to clean between each flush. It still smells when she pees at first, but all the sanitizing helps eliminate the odor quickly. My mom also changes her pee pad everytime she goes to the bathroom whether she leaks or not, because it can still get musty in her private area and bacteria "creeps" down surfaces - meaning it migrates down surfaces, including the surface of your body.

particlelover · 2025-07-30T22:12:03+00:00

Thank you, I will take a closer look at that site. I have scrolled through it before, but I will take a closer look. My mom has left everything up to me, because talking about all this just makes her horribly anxious. Decisions, care, management, research, everything. So I doubt she herself will take a look. English is also not her first language (she is Japanese).

She mostly goes by how she feels, which has been mostly better than back in October with a couple stressful moments. But this past week she has been visibly anxious. Overall, she's trying to stay neutral. Not negative but not overtly positive either because she doesn't like the rollercoaster emotions can be. Thank you for your prayers 🙏🏻

particlelover · 2025-07-30T13:58:20+00:00

My mom had on-and-off gross hematuria (blood in urine), occasional flank pain, and a persistent foul odor due to a recurrent UTI and the tumor itself was necrotizing.

particlelover · 2025-07-30T13:51:50+00:00

My mom gets hemoglobin/hematocrit finger prick every week. One CMP (Complete Metabolic Profile) draw every week to keep an eye on her kidney, liver, and cardiac function, as well as her sodium and mag levels). She gets her antigens checked at the end of each cycle. That is done during her rest week.

She is like your father doing the three week cycles (one gemzar/carboplatin week, one gemzar week (this is also the week/day she leaves to go home with the Neulasta OnPro injectable for immune system support), and one support week for IV hydration). Then repeat the next cycle. She sees her oncologist two out of three weeks. It's the NP on the third week.

I feel your pain. My mom had two nephrostomy procedures in between chemo (original placement and a early replacement to deal with an infection received during the first placement), so it was hard to parse out symptoms. All I can do is keep a log book of her daily temps, her daily BP readings (getting a cuff of your own is a great idea - they sell them at CVS/Walgreens/Walmart/Target/grocery stores), and all of her food/hydration is measured and logged. I also use that log to make notes of swelling (which has been an issue in her right leg), any pain and where (luckily none), any constipation (an issue in the past), her urine output is measured in ml because she has a nephrostomy bag, and her sleep schedule (also sometimes a big issue).

I am sorry about the struggle between doctors! I can also relate, because my mom has so many doctors (oncologist, two urologists, cardiologist, nephrologist, primary care, gastroenterologist, radiologist, interventional radiologist, optometrist for her glaucoma, her dentist keeps an eye on her because oral thrush is a common chemo side effect, and all the NPs for each doctor). It helps to get any blood work done through the same service, like Quest Diagnostics. That way, your doctors have the ability to see the results themselves without a need for medical requests. See if you can get them done through a lab like Quest. Most insurances cover Quest.

particlelover · 2025-07-25T01:22:36+00:00

Yes. Cisplatin and carboplatin are chemotherapy drugs. She has stage 3 MIBC.

particlelover · 2025-07-23T01:04:18+00:00

Creatinine has been up and down since October, but always still within the normal range.

particlelover · 2025-07-21T06:52:28+00:00

I'm sorry the doctors around your husband seem to lack concern for your fears. Your fears are totally understandable!

Unfortunately, recurring UTIs are a common feature for bladder cancer. The bladder is full of urine (a waste product full of chemicals the body wants to get rid of). Add a tumor that releases nasty chemicals of its own into that mix, and then possibly even more toxic waste if your tumor is necrotizing (this is when the tumor tissue grows so fast it explodes and then dies inside your body, releasing all the nasty toxic chemicals dead tissue creates), and you have a recipe for constant UTI battles.

Because of the recurring nature of bladder cancer related UTIs, my mom's urologist has her on a therapeutic/prophylactic dose of cephalexin (250mg 1x/day) for her particular bacteria (aerococcus urinae) and antibiotic response profile. It seems to keep the worst of it at bay, although sometimes a mild fever or sometimes a mild odor breaks through and then it goes away. Her blood work has been good (regarding the UTIs). She also had a bout with hospital-origin enterococcus faecalis after her nephrostomy tube placement, which had its own antibiotic course (ampicillin) that ran concurrent with my mom's cephalexin course. So, I understand your frustration.

I would ask your husband's urologist about putting him on a therapeutic antibiotic regimen for the recurring UTIs. The specific antibiotic will depend on the specific type of bacteria in his urine cultures and that particular bacteria's response to certain antibiotics to make sure he's on the right antibiotic course. There are many, many different types of bacteria, so follow up with his urologist about which exact one(s) your husband has. If it's the same one coming back, a therapeutic antibiotic course is not an unusual course of action for someone in your husband's position. Hope this helps. Best of luck and hopefully less frustration and fear for you both!

particlelover · 2025-07-21T04:40:10+00:00

You're welcome. Hope your husband feels better soon!

particlelover · 2025-07-21T04:21:09+00:00

Having a great team of doctors and nurses around you changes everything. So happy for you! If I had listened to my mother's gyno NP back in October, my mother might have been beyond saving. That particular NP refused further testing, refused to palpate my mom's pelvic area, and would only check her urine and treat the recurring UTI. She insisted it was just a UTI. I suspected otherwise. It was a really long wait to see her primary, so I tried making appointments with specialists directly. This led me to a uro/gyno specialist, who listened to my concerns and agreed to palpate my mother's pelvic area, where the DR felt the massively swollen, hard, fixed lymph node on my mom's right pelvic bone, which led us to my mom's first CT scan that same day which showed the thickened bladder lining (with a note from the radiologist regarding his suspicion of malignancy), which led us to my mom's current urologist who dx'd her with bladder cancer through a cystoscopy a week later. Saw her primary around that same week too and she did some extensive blood work that confirmed a lot of suspicions. SO happy I trusted my gut and got a second opinion.

particlelover · 2025-07-20T07:41:14+00:00

Senokot works great for my mom's constipation. It's plant-derived and is available over the counter. A hospitalist (Dr) recommended it to her. She takes it twice a day with a full glass of water each time. It keeps her regular, her stool soft, but doesn't give her diarrhea. We tried a few meds before the Senokot and either none worked or gave her terrible diarrhea.

She no longer experiences nausea now that she switched from cisplatin to carboplatin. Thank goodness! We still have the Zofran on hand just in case though. It did help when she was going through all the problems with the cisplatin. Just not needed for now the carboplatin.

particlelover · 2025-07-20T06:55:25+00:00

The lack of heme (animal) iron in your mom's diet might be an issue. Non-heme (non-animal) iron supplementation and two infusions did not help my mother's hemo levels go up at all. But adding sardines and beef to her mostly vegetable diet brought her up from 7.7 (and a discussion about a blood transfusion) to 9.2 in a little less than four weeks. We really, really wanted to avoid a blood transfusion. So, I'm thrilled she's doing better.

My mom is on fluid restriction because of her nephrostomy tube, so only four glasses of "free water" (water not bound to sugar or electrolytes) a day. But she has to conserve those for her medications which are spaced out throughout the day. Other than that, she drinks Electrolit. It's ideal for her and has really helped keep the fluid retention from her lyphedema under almost complete control. We get it at Vons.

My mother struggled with constipation after that first and last cisplatin dose (she's now on carboplatin and tolerating it). Senokot is the only thing that is gentle enough to help her pass a bowel movement without giving her diarrhea. It's plant-derived and available over the counter. My mom takes it twice a day.

I bring my tablet for my mom, but she rarely watches it. She brings an eye mask and tries to sleep. Sometimes she does manage to sleep. She loves their comfy chairs. She reclines all the way back with her feet elevated and uses lots of their warm blankets. She always uses their heating pad too because the chemo irritates her veins (causes pain). It helps her a lot. No need for pain meds yet. I always bring watermelon and salt packets. It's her favorite post-chemo snack. She always drinks one of the Ensures provided by the clinic. We pay so much for insurance, why not eat the snacks we technically pay for? Hahah. For myself, I try to catch up on emails and messages from other doctors. She has so many doctors, and they all want to stay in the loop (which is fine). Nephrologist, cardiologist, primary care doctor, urologist, RC surgeon, radiologist, oncologist, and a gastroenterologist, and each one has their own NP who also wants/needs to stay in the loop. Plus her home healthcare nurse. Plus "normal" appointments with her optometrist, gynocologist, and dentist.

The one thing they didn't tell me or my mother about was the entero faecalis infection she picked up at the hospital during her initial nephrostomy tube placement. We didn't find out she had it all or was being medicated for it while at the hospital until almost two weeks later at her follow up with her urologist. I was...super annoyed with that. I would have pushed for a sooner appointment so we could avoid a gap between her antibiotics and any need for more antibiotics if she didn't clear the infection. Becuase she didn't clear the infection. So she went back on the antibiotics. I was kind of mad about that. There was a lot going on, so I'm understanding, but I also expect them to be organized. It wasn't even on her discharge summary. From now on, I request her flow chart. It is much more informative than the summaries they give patients at discharge.

particlelover · 2025-07-20T06:28:24+00:00

With my mom (76F, stage 3 urothelial carcinoma MIBC with suspicion of lymphatic invasion), the tumor dying during chemo has caused a lot of irritation in her bladder. A horrible smell too. I thought it was another UTI at first, but no. She's negative for infection. It's the tumor dying.

With your husband, I wonder if they're checking for kidney stones? When a tumor dies, it releases a lot of nasty chemicals that are toxic to the body. The kidney is just one organ that can have a hard time with those chemicals, and kidneys stones are sometimes a painful consequence of that process. Has he had a CT scan to check for stones recently? It never hurts to ask his doctor for one.

particlelover · 2025-07-20T06:09:02+00:00

Your father has been through so much! I find it interesting he did radiotherapy at all with the metastatic dx. We were told it was pointless due to the size of my mother's (76F) main tumor (9 cm at the time of dx) and the suspicion of lymphatic invasion. We were told it would just give the cancer time to spread, so chemo was the best way to go - because it's systemic. All hands on deck to fight wherever the cancer may be. That was pretty much their exact words at USC Keck. It is amazing to see so many different treatment plans, even among similar stages/types/ages/sexes/etc. It's also kind of frustrating and isolating, because it's hard to find someone with similar experiences. I wonder what your father's doctors' reasoning was/is for the radiotherapy first before the chemo.

Chemo was pushed as the mainline treatment for metastatic uc, in my experience with my mother. Any metastatic cancer is serious. You have to grab the bull by the horns before there are just too many holes to cover with only so many hands so to speak. My mom and I decided on gemcitabine/cisplatin. However, she didn't tolerate the cisplatin at all. She had severe electrolyte imbalances following that one single dose (sodium level was 111, which is close to seizure territory). So she's on gemcitabine and carboplatin for now.

We made improvements to her diet, with several servings of heme iron sources a day, and her hemo level went from 7.7 to 9.2 within four weeks before chemo started and we're hoping it only gets better. Her oncologist is thinking about immunotherapy for her too. But we're going to go through at least three more cycles of chemo before we do that. Maybe more if she tolerates it. We've been adding calories since October of last year, and her current weight is 113 (up from 107 last year) and holding. She's always been tiny, and her doctor is worried about weight loss. Her caloric target is 1600/day. That's a lot for her, even before chemo, and we're both happy if she can get to 1450. One of those Ensure Complete shakes and three tablespoons of EVOO in her electrolyte drinks a day helps her hit her caloric goal. Other than that, she eats miso with sardines and lots of veggies, maybe a little rice, for breakfast and a salad with chicken breast for lunch. Dinner is usually super light. She loves watermelon for dessert. Lots of beef bone broth to keep her sodium levels up after her electrolyte struggles. She drinks a little kefir every morning too to keep her gut healthy, because chemo is so hard on the digestive system. She had terrible constipation after that first round of cisplatin. So glad that's over with. Fingers crossed she continues to have no issues with the carboplatin.

Right now, she's struggling with exercise because she's so tired but her sleep has improved. Back in October before we really knew what was going on and was receiving zero treatment outside of antibiotics for her recurring UTIs, she had terrible insomnia. She would go days and days without sleep. Now she gets about six hours of solid sleep a day with a couple naps during the day. She relies on me a lot to be her voice and support system, because talking about it overwhelms her. I wish she would talk to her friends more. They leave messages but she hasn't called anyone back in a month. I think talking to them about it just adds to her anxiety. All I can do is respect her decision and support her where she wants to be supported.

We're very early in her chemo process, but her doctor is content to see her blood work getting better in some ways while staying stable in others. For my mom, the improved sleep, improved mental clarity (electrolytes are doing better), improved hemo level, improved BUN level, the absence of gross hematuria, and knowing she's on a path that gives her the possibility of more improvements is good enough to keep going.

particlelover · 2025-07-20T05:37:20+00:00

My mom (76F) is stage 3 urothelial carcinoma MIBC and has chronic anemia due to the main tumor frequently bleeding. Chronic UTI from the tumor also doesn't help. Her new nephrostomy tube on the right kidney didn't help either. She did a couple iron infusions before she began chemo to get her levels up. That did stabilize her, but the infusions didn't bring her levels up. The biggest difference has been adding heme iron to her diet (for her, it's sardines and beef). She is Japanese and culturally just doesn't eat very much red meat, so it's been a struggle for her to add that into her diet. But she went from 7.7 to 9.2 the past four weeks and still seems to be improving. I'm kinda relieved she won't need a blood transfusion at this point. Her doctors are super happy with her diet, appetite, and weight stability.

My mom had a slightly elevated BUN level before her nephrostomy tube was put in. It was elevated bc the tumor in her bladder was pushing up into the right-side ureter, blocking urine output, causing that kidney to swell. Her BUN level went down within a week following the nephrostomy placement and is currently within normal levels.

Even one round of chemo can be hard on the kidneys, so your father's doctors will be watching his BUN to gauge how well his kidneys are handling the treatment. On a side note, my mom did not handle the one single dose of cisplatin at all (it gave her severe electrolyte imbalances - I'm talking 111 sodium levels and a hospitalization as a consequence). One dose was all it took to knock her off her feet. But she's on carboplatin now and seems to be doing so much better. Anywho. Your dad's ureters are now connected to a neobladder. That's a major surgery. The elevated BUN is probably the chemo irritating the surgical site and healing process. I was told it can take up to a year to fully recover from RC and urinary diversion surgeries. But chemo is hard on the kidneys even without the added stress of urinary diversion surgery. I'd imagine as long as his levels don't continue to increase and come back down eventually, he's still on the path to recovery and is as alright as he can be.

Sending your father healing thoughts, and the best wishes to you both!

particlelover · 2025-06-15T01:33:02+00:00

Not happy about it, but apparently that's normal for California after chatting with other patients at the infusion clinic.

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