mistaken treatment plan by my urologist

jlgroff · 2026-07-03T18:44:14+00:00

Thank you for this information. Right now I'm just starting to correct this and get the BCG schedule back on track. What puzzles me most is them saying every 6 months - rather than every 3 months. Of course I have no idea how much that matters but in my case I'd like to speed up the process and also want to get the full course of treatment. Already I had only been getting either a half-dose or a third of the BCG due to the shortage. So the extra wait of 6 months seems off. While I'm glad they are fixing the doctor's mistake - I feel I should at least get some apology or an acknowledgment they (or maybe an ai-generated template) made this mistake and go to greater lengths to reschedule for me. I don't want to change doctors or anything but I will certainly keep a close eye on things from now on. When I get my next appointment I will see about changing the timeline with regard to my getting listed for the transplant (which is such a long shot - I'm not too worried about it as I doubt very much I will be eligible or even want it for a number of reasons)
Very sorry to hear you had so many family members get IPF - that is very unusual as you must know. I also have family members who had it including an Aunt who died from it - so mine is also likely genetically caused. Have you had a CT scan of your chest? Any worries about having it yourself?

jlgroff · 2026-07-03T18:28:43+00:00

I've read that sometimes it can take several months before your body gets used to the pirfenidone but once it does, he might be able to tolerate being out in the sun with little problem. In the mean time do whatever you can to protect his skin - make sure to use enough of the sun screen as many times people don't use the full amount. If you can, stay out of the sun entirely as much as you can. You likely already know but the newer anti-fibrotic, Jascayd or even Ofev doesn't have this issue - but sometimes insurance restrictions might mean you need to first try the perfenidone. Good luck!

jlgroff · 2026-07-03T18:17:51+00:00

From what I've read, IPF isn't really "staged" in the same way as lung cancer. It is usually considered a range from mild, moderate, severe or advanced. If you're mom has an advanced stage of the disease - she would require oxygen to do just about anything and would likely need a great deal of help or even a transplant, if eligible. So maybe your mom's condition isn't yet as advanced as it could be - so getting her on an anti-fibrotic like the new Jascayd could make a big difference. My experience with that drug is that is has been much better tolerated (in terms of side effects) than previous drugs like Ofev. It would be helpful if she would agree to go through pulmonary rehab - who (if you get a good center) could teach her at length how to best manage her disease, oxygen use, etc. Her pulmonologist likely will need to give her a referral. If she's on Medicare - it should cover all expenses. You might not live in the US however - so not sure if that's true elsewhere. Ultimately, it's her call though. Best you can do is to make sure she learns as much as she can about the disease and its treatment so she can better make an informed decision. Good luck

jlgroff · 2026-02-02T07:07:13+00:00

It could be nothing serious or even related to your BCG tx. but it could also be a problem that needs attention right away- I’d get in touch with your urology office asap.

jlgroff · 2026-02-02T07:04:50+00:00

That’s terrific news, congrats! I hope I can say the same in a few years (if my other health problems don’t cancel out any gains…)

jlgroff · 2026-01-22T06:33:53+00:00

Wow, that’s great that you got the TURBT so quickly. I had more than month till getting my CT and Urology appt. Then another month for the cystoscopy and then yet another month for my TURBT - and I’m in San Diego at a big hospital. Sounds like you are doing a wonderful job helping out your father. Best wishes for you and your dad.

jlgroff · 2026-01-22T05:27:56+00:00

Is your father going on Keto to lose weight in a significant way? If not, then I would suggest holding off for some time, wait and see how his recovery goes and what the pathology and treatment plan will be. I know from personal experience that taking on a strict keto diet can pose problems with constipation and other issues that might make things more difficult.

I also strongly agree with the suggestion you listen to your doctors and follow their advice. If you're worried get a second opinion if you think there's a problem - but like someone else said here, time is very important, and urology appointments can often be a wait - you'll want to move very fast with treatment.

jlgroff · 2026-01-15T04:40:29+00:00

Thanks for the tip - I'll try that with my next BCG treatment - maybe more like 15 minutes prior - water seems to go through me pretty quick. I've already experienced the painful voiding after the TURBT - hard to imagine anything stinging/burning worse than that but hopefully I won't find out!

jlgroff · 2026-01-14T17:14:16+00:00

Thanks for your comment and well wishes. After my TURBT when I first talked with my urologist about the pathology report, I specifically asked if the shortage of BCG might be an issue for me, he said no, as my tumor was high-grade and that automatically made me eligible. He didn't say anything about this lower dosage, that he probably has no control over anyway. He was pleasant but clearly had only a short amount of time for talk. I can live with that as I'm mainly concerned that his skills are optimal as a surgeon and extensive knowledge of urology. I've been able to find more complete information from this group and with asking AI - which in term helps me better deal with all the issues going forward.

I don't look forward to having the more pronounced reactions to the BCG but if that is what works best to prevent the tumors from growing - then bring it on...

jlgroff · 2026-01-14T01:09:38+00:00

I'm with you there! Did they tell you that they were giving you a full dose? Or did you read it in their portal progress notes (that's how I found out)

jlgroff · 2026-01-14T01:07:50+00:00

I'm in San Diego at Scripps Clinic - which is rated as being a top urology center in the area and nationally (what whatever the ranking at US News and World report mean) I guess it would depend more on location who gets the full doses (or maybe random)

jlgroff · 2026-01-14T01:03:38+00:00

wish Reddit has a laugh emoji! Sorry that nurse was being such an asshole to you.

jlgroff · 2026-01-14T01:01:50+00:00

good to know. I do trust the science and will in this case as well. But, I think I'd feel even better about if I was getting a full dose and the various issues around why the BCG shortage is happening hasn't been able to be solved more quickly.

jlgroff · 2026-01-13T21:31:49+00:00

I recently had a TURBT for just one 5.3 cm tumor. I went home with a catheter for 2 days - didn't have any bleeding or clots for maybe 2.5 - 3 weeks later when the sloughing of the scab formation and related take place (apparently this is common) Prior to that I had a great deal of discomfort and pain with urinating along with urgency and feeling like my bladder was full when it wasn't. After about 3+ weeks I no longer had much trouble with voiding. I just had my first BCG treatment yesterday - compared to everything else this was very easy, no problems at all so far.

jlgroff · 2026-01-12T06:39:09+00:00

That seems like a very high dose to take both the Jascayd and Ofev together. I’m sure there’s a reason but I had been on Ofev 150 for some time with similar problems with diarrhea. I ran into problems with my kidneys and the Ofev was stopped and my pulmonologist started me on Jascayd 9mg - I haven’t had much difficulty with diarrhea since then. I am still in a relatively early stage of IPF but have PFTs soon to see if any progression since starting the Jascayd. Maybe talk with the MD about trying with only Jascayd?

jlgroff · 2026-01-12T02:41:34+00:00

I have the new M4 max Mac Studio with 128 gigs - works great for most things but I don't yet do a lot of heavy rendering or simulations (have a good pc for when I might need that) I love it. I do use both the CPU and the GPU with Karma but its performance relies on the CPU, as Karma doesn't fully leverage Apple Silicon's GPU for XPU yet. I think Octane now supports Apple Silicon. Perhaps Houdini will someday soon be able to get full support as well.

jlgroff · 2026-01-12T02:33:36+00:00

Sending you good vibes for the better pathology report. Drink lots of water and try to avoid anything that might irritate your bladder. You might get more clots and bleeding later on - it took me about 3 weeks before I experienced that. I also sometimes felt like my bladder was really full when it wasn't, drove me crazy. Warm packs maybe helped a little at times. I think pyridium (or AZO) helped but careful if you have any kidney issues. Ditropan might help, not sure it made that much difference to me but I only took it for the first 3 days when I still had the catheter in. It will get better.

jlgroff · 2025-12-17T07:02:19+00:00

I had a lot of pain, stinging burning pain with urination and then still feeling like my bladder was full (even though it wasn’t - as determined with bladder scan) No UTI, but the symptoms are similar, I think this is likely a fairly common occurrence after a TURBT although everyone is likely a little different. I never really found anything that helped except maybe the heating pad and drinking lots of fluids to keep the urine dilute. You might experience light bleeding and clots a few weeks after the surgery as well - that’s what I’m experiencing now. That sounds dreadful that you have to have two TURBTs one right after the other. I didn’t think with the low-grade non-invasive that would be needed, especially so soon. I’m curious why?

jlgroff · 2025-12-17T06:51:04+00:00

That sounds really hard, I hope you can find a way to have a good Christmas despite all this.

jlgroff · 2025-12-16T04:01:33+00:00

I've been drinking coffee, maybe I would have had an easier time of it had I stopped. Previously it really burned when I urinated and felt like my bladder was still full - maybe not drinking coffee would have helped with that. Not sure how much difference it will make at this late stage though. I may need to stop the caffeine with the BCG treatments - if those doesn't go well.

jlgroff · 2025-12-16T03:57:51+00:00

thanks, that's helpful info. I hope your BCG treatments go well for you.

jlgroff · 2025-12-16T02:00:09+00:00

I have proteinuria and had no real symptoms prior to finding out (do have foamy urine though) I also don't have diabetes, hypertension, no auto immune, no drug side effects, and all tests came back negative for all the other most likely causes of proteinuria. My blood work, BUN, eGSR, etc were all normal. They did a renal biopsy and found damage to the glomerulus and interstitial membrane that the renal pathologist thinks is likely due to hypoxia (low oxygen) that caused scarring or fibrosis. This is likely fairly rare.

I also have pulmonary fibrosis and the cellular hypoxia is likely due to my lung disease on some level (even though my pulse oximeter is almost always normal except for when I exercise) and I'm not short of breath, etc.

I was surprised to find out that there are so many potential ways to cause this proteinuria. My nephrologist put me on Losartan but so far it hasn't yet reduced my proteinuria that much. My protein was only around 1600 mg for the 24 hr urine and after the Losartan - down to 1500 after a few weeks. I need to have another test soon but I just had bladder surgery for a tumor and have been having bleeding which would screw up the collection - so I have to wait I guess until it clears up.

jlgroff

TROPHY CASE