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Post by elaine on Nov 6, 2020 3:12:16 GMT
So you had Adriamycin and Taxol, but did you also have Cytoxan? The typical regimen is AC-T. Cytoxan can cause bladder issues/bladder cancer, even up to a decade after you finish up chemo. I had a severe reaction to it just after I finished it and moved on to Taxol, and was in and out of the ER with urinary bleeding. I had what felt like a bladder infection for 3 months solid. It was a HUGE problem for me. That is when I found out about the potentially long-lasting effects of Cytoxan on the bladder. I went back through my paperwork, I did have Cytoxan, AC-T. Jesus Christ. I need to call my oncologist too, I guess. Thank you for letting me know. Yes, please call your oncologist tomorrow. It isn’t a common side effect, but it definitely is one and research shows that it can be long lasting. Push to have your symptoms taken seriously. If you don’t have bacteria indicating a UTI, it very well could be due to the Cytoxan.
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Mystie
Pearl Clutcher
Posts: 4,299
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Nov 6, 2020 3:14:06 GMT
elaine Has your bladder situation resolved itself at all? Don't feel like you have to answer if this is too personal.
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Post by elaine on Nov 6, 2020 3:24:00 GMT
Yes, after feeling like I was peeing glass shards for over 3 months, it finally did resolve itself.
That it was due to the chemo was made clear when they tried two different courses of antibiotics and pyridium (the stuff that makes you pee orange) and it made absolutely no difference to my pain and urgency.
I won’t be surprised, however, given the problems I had with it, if I am one of those who does have bladder issues again down the line due to Cytoxan.
While I don’t wish side effects on you, I wanted to give you what might be an explanation. The bad news is that nothing gave me relief. I felt so crappy due to the Taxol, that it was just one more thing. If I felt better overall, I would have been more frantic about it, because it was so uncomfortable and painful.
I hope that you are able to get some answers and relief. I hope that for your sake and how bad your symptoms have gotten that they at least try you on a round of antibiotics to see if there is some infection that isn’t being picked up on.
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seaexplore
Prolific Pea
Posts: 8,408
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Nov 6, 2020 3:32:05 GMT
No advice but I went in on Tuesday for a pee test for a suspected UTI. Generally I have no pain until it’s in my kidneys, need to avoid that. Sigh, Test results... yellow, slightly cloudy, rare bacteria, wbc of 65, RBC of 5, squamous cell count of 20, moderate hemoglobin, leukocyte esterase small. The doctor gave me cipro. It seems to be helping. Just got a message that they didn’t grow out the culture due to “contamination from skin bacteria”... um... ok? I used the alcohol wipe well to avoid that. WTF!
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paigepea
Drama Llama
Enter your message here...
Posts: 5,609
Location: BC, Canada
Jun 26, 2014 4:28:55 GMT
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Post by paigepea on Nov 6, 2020 3:40:54 GMT
Yesterday I started frequent urination, and have some slight pain/discomfort in my vulva/groin area. Maybe a little pain in my belly and lower back, but it seems to come and go and it's not something that's drawing my attention. But the frequent urination (no burning sensation) makes me think something's up. I'm drinking unsweetened cranberry juice, will call doctor on Monday if it's not better, but was wondering if this is a UTI or what. These things always happen on a Friday, don't they? Update: so it's been almost a week since this started. I saw my primary care on Monday, gave a sample, and they ruled out a UTI right away. They did more tests and I got the word today that they found no infections, urine seems normal. Meanwhile, I feel like I need to urinate all the time now. I go to the bathroom and feel the "need to go" pressure as soon as I stand up. I'm in the bathroom a couple times an hour and pee just a bit, usually, So the dr is aware, I messaged her this morning, but I have no response so far. Tomorrow is Friday again, so two more useless days where I can't get help; even of I take it upon myself to find a urologist, who knows how long it will take to get in. I have several other health things going on, mostly as a result of my cancer treatment earlier this year, and this new issue has got me at the end of my rope. I just want to feel well. If anybody has any ideas about what this could be and what I should do, I'd be grateful. It seems like my bladder is malfunctioning. Are you dehydrated? Also if you bothered yourself with dehydration but have since rectified the problem you can continue to have problems / pain. I had this happen to me once. I went to a urologist. He told me I wasn’t emptying enough when I did sit down to pee. I said it felt like I was and he told me to sit and relax and hang out and let it all come out. Eventually I started emptying enough. He told me I was being too rushed. It did eventually cause pain and frequent urination which is why I ended up at the urologist. I was tested for UTI as well.
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Mystie
Pearl Clutcher
Posts: 4,299
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Nov 6, 2020 3:56:31 GMT
Yes, after feeling like I was peeing glass shards for over 3 months, it finally did resolve itself. That it was due to the chemo was made clear when they tried two different courses of antibiotics and pyridium (the stuff that makes you pee orange) and it made absolutely no difference to my pain and urgency. I won’t be surprised, however, given the problems I had with it, if I am one of those who does have bladder issues again down the line due to Cytoxan. While I don’t wish side effects on you, I wanted to give you what might be an explanation. The bad news is that nothing gave me relief. I felt so crappy due to the Taxol, that it was just one more thing. If I felt better overall, I would have been more frantic about it, because it was so uncomfortable and painful. I hope that you are able to get some answers and relief. I hope that for your sake and how bad your symptoms have gotten that they at least try you on a round of antibiotics to see if there is some infection that isn’t being picked up on. I really appreciate you letting me know about this; it gives me a direction to go in, which is a big help.
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Post by Really Red on Nov 6, 2020 4:05:07 GMT
Ugh. Just lots and lots of hugs. I hope you find the reason and it is an easy one to resolve.
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scrapngranny
Pearl Clutcher
Only slightly senile
Posts: 4,763
Jun 25, 2014 23:21:30 GMT
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Post by scrapngranny on Nov 6, 2020 4:33:12 GMT
An ultrasound might be your best bet. They could check out your ovaries at the same time. You could have an ovarian cyst that is irritating your bladder.
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gsquaredmom
Pearl Clutcher
Posts: 4,078
Jun 26, 2014 17:43:22 GMT
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Post by gsquaredmom on Nov 6, 2020 4:46:59 GMT
Did you start any new vitamins or supplements recently? I tried taking beet capsules and after a few days had exactly what you describe. Stopped and it went away. Tried again and it came back. Stopped and no more issues. At all. For over three years now.
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Post by Legacy Girl on Nov 6, 2020 4:54:37 GMT
Ask your doctor about Interstitial Cystitis, too. The symptoms are similar to a UTI, but it doesn't show up on a urine test. They usually have to do a scope of the bladder to find evidence of it. It can be a seriously painful problem. Hope this is another alternative to consider.
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Post by grammadee on Nov 6, 2020 4:57:46 GMT
Mystie, have you tried a sodium citrate powder like Cystoplus (Canadian brand name)? When antibiotics were not doing the trick for me, my pharmacist recommended this. It apparently treats cystitis, which is a bladder inflamation.
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Post by miaow on Nov 6, 2020 5:20:18 GMT
I am sorry you are dealing with this!
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Post by Basket1lady on Nov 6, 2020 12:10:38 GMT
Ask your doctor about Interstitial Cystitis, too. The symptoms are similar to a UTI, but it doesn't show up on a urine test. They usually have to do a scope of the bladder to find evidence of it. It can be a seriously painful problem. Hope this is another alternative to consider. I was thinking this. But Elaine came up with a good guess as well. I’m so sorry that you are dealing with this.
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peabay
Prolific Pea
Posts: 9,598
Jun 25, 2014 19:50:41 GMT
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Post by peabay on Nov 6, 2020 12:50:32 GMT
What are you drinking besides water? I get symptoms like that if I have too much coffee and not enough water. That's what I was going to say. I sometimes feel like my bladder can get irritated by certain things - most definitely by carbonation. Most definitely by caffeine.
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Post by revirdsuba99 on Nov 6, 2020 15:57:38 GMT
Ask your doctor about Interstitial Cystitis, too. The symptoms are similar to a UTI, but it doesn't show up on a urine test. They usually have to do a scope of the bladder to find evidence of it. It can be a seriously painful problem. Hope this is another alternative to consider. I was thinking this. But Elaine came up with a good guess as well. I’m so sorry that you are dealing with this. I was going to say that they might need to go in and look and/or ultrasound. < (((((((((((HUGS))))))))))
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Post by lurker on Nov 6, 2020 19:07:30 GMT
Mystie, are you feeling any better today?
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Post by rymeswithpurple on Nov 6, 2020 19:20:00 GMT
An ultrasound might be your best bet. They could check out your ovaries at the same time. You could have an ovarian cyst that is irritating your bladder. I was thinking along those lines to. I was in the ER in 2016, and they diagnosed it as a UTI and sent me on my way... I was back two days later. Ovarian cyst.
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Mystie
Pearl Clutcher
Posts: 4,299
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Nov 7, 2020 6:15:49 GMT
Mystie, are you feeling any better today? It's kind of you to ask. No better, in the bathroom constantly, feel like I need to pee all the time. My dr had me start taking Azo today, which is for UTIs, which I didn't have when they checked my pee on Monday, but whatever. It's two days of pills, which fits into the weekend when I can't get help anyway, so why not? If I'm not better by Monday I'm finding a urologist and also calling my oncologist.
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Mystie
Pearl Clutcher
Posts: 4,299
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Nov 7, 2020 6:18:07 GMT
Did you start any new vitamins or supplements recently? I tried taking beet capsules and after a few days had exactly what you describe. Stopped and it went away. Tried again and it came back. Stopped and no more issues. At all. For over three years now. I started calcium a few months ago, but nothing else new.
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Post by lauradrumm on Nov 7, 2020 7:23:26 GMT
Kidney stone? They can start out just uncomfortable at first
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Post by emelle64 on Nov 7, 2020 12:48:54 GMT
I saw above that you are a cancer patient but I’m not sure what kind of cancer you had. I feel I always need to jump in to these threads where people are talking about their bladder because pressure on my bladder was really the only symptom I had of ovarian cancer. I would never want to alarm someone but as someone who had lots of UTIs before, this felt different for me. I would always advocate to listen to your body. I think you should be in touch with your oncologist.
Five years out from finishing chemo I’m in a similar situation with some odd bladder symptoms. I’m scheduled for a cystoscopy on Wednesday to rule out bladder cancer.
Emelle
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Post by malibou on Nov 7, 2020 15:03:03 GMT
emelle64 keeping you in my thoughts while you get your health concerns figured out. Fingers crossed.
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Post by auntkelly on Nov 7, 2020 16:05:36 GMT
I hope you are feeling better soon.
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Post by elaine on Nov 7, 2020 16:23:18 GMT
I saw above that you are a cancer patient but I’m not sure what kind of cancer you had. I feel I always need to jump in to these threads where people are talking about their bladder because pressure on my bladder was really the only symptom I had of ovarian cancer. I would never want to alarm someone but as someone who had lots of UTIs before, this felt different for me. I would always advocate to listen to your body. I think you should be in touch with your oncologist. Five years out from finishing chemo I’m in a similar situation with some odd bladder symptoms. I’m scheduled for a cystoscopy on Wednesday to rule out bladder cancer. Emelle I’m sorry to hear about your ovarian cancer. I hope that the treatment wasn’t too hard on you. It is such a battle. I hope that you are able to find out a reason for your bladder symptoms that isn’t cancer. ((Hug)) Mystie had breast cancer. I’m fairly certain that she is on an estrogen blocker, so wouldn’t have a typical ovarian cyst caused by egg ripening, but certainly could be another ovarian issue. I hope that they check all of that out for her, because I can only guess how uncomfortable she is, and if it is something more serious, treat her sooner rather than later. I know when I was having my chemo-related bladder issues, it was difficult to focus on anything else.
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zella
Pearl Clutcher
Posts: 3,884
Jul 7, 2014 19:36:30 GMT
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Post by zella on Nov 7, 2020 18:29:41 GMT
If no infection, then I'd suspect interstitial cystitis. It's a pain in the ass, but it doesn't have to be forever. Research it. Not sure what treatments are... it's been decades since I had it.
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Post by 50offscrapper on Nov 9, 2020 5:13:34 GMT
I went back through my paperwork, I did have Cytoxan, AC-T. Jesus Christ. I need to call my oncologist too, I guess. Thank you for letting me know. Yes, please call your oncologist tomorrow. It isn’t a common side effect, but it definitely is one and research shows that it can be long lasting. Push to have your symptoms taken seriously. If you don’t have bacteria indicating a UTI, it very well could be due to the Cytoxan. Always call your oncologist, you can jump any line to any doctor if your oncologist calls for you. Those drugs are pretty powerful. When I had them, I was told to drink lots of water and not to let too much pee sit in my bladder. Taxol sucks worse than anything. At least it did for me. Hugs.
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Post by Baseballmom23 on Nov 10, 2020 2:26:43 GMT
I saw above that you are a cancer patient but I’m not sure what kind of cancer you had. I feel I always need to jump in to these threads where people are talking about their bladder because pressure on my bladder was really the only symptom I had of ovarian cancer. I would never want to alarm someone but as someone who had lots of UTIs before, this felt different for me. I would always advocate to listen to your body. I think you should be in touch with your oncologist. Five years out from finishing chemo I’m in a similar situation with some odd bladder symptoms. I’m scheduled for a cystoscopy on Wednesday to rule out bladder cancer. Emelle Praying for you Emelle. I have been fighting ovarian cancer for the last three years.
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