Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Fill Out Your Profile to share more about you. Learn more...
Webinar: Corrective Breast Reconstruction: Getting the Results You Want Join us July 9, 2024 at 6pm ET. Register here.

UTI's

Options
24567

Comments

  • ck55
    ck55 Member Posts: 28
    Options

    Wintersocks, I am so sorry to read that you are still suffering from this! You must be so frustrated. Have you tried any of the hormonal treatments like Vagifem or estrace cream? These are the only things that have helped me. I know it is scary messing around with hormones after all we go through to try and block them out of our lives, but quality of life is a huge issue for me. So I guess, for me, it is worth the risk.

    Cyndi

  • hikertexas
    hikertexas Member Posts: 1
    Options

    Thank you for beginning this topic. I have been wavering near a UTI several times since I began AI therapy in June. I take an over the counter Cranberry capsule and have averted infection so far. I will now be able to have an informed discussion with my doctor about other things I can do (water, water, water) to stay healthy.

  • wintersocks
    wintersocks Member Posts: 434
    Options

    Cyndi

    Hi there. I was recommended Vagifem, but was too scared to use it cos I am 8/8 Er. They did tell me that it was safe as it was topical. maybe I should revisit this. If you don't use it do you get UTI's?

    Hikertexas. I am please you have managed to avert so far; constant UTI's are so wearing. It's been one of the hardest things for me.

    I am having to talk to the GP tomorrow as I don't think this abx is working. I still feel constantly like I need the loo.

  • dtad
    dtad Member Posts: 771
    Options

    Hi everyone...aromatase inhibitors can thin the lining of the bladder which causes UTIs and interstitial cystitis. You can try Mannose D for the UTIs and Bladder Q for interstitial cystitis. Both of these can be absolutely miserable!!

  • ck55
    ck55 Member Posts: 28
    Options

    You definitely need to revisit this. Yes I would have UTI's were it not for the Vagifem. And I do understand your fear. I was 100% ER/PR +. But to me quality of life won out. The constant infections were driving me insane. I don't know how you have dealt with this for as long as you have! You are a stronger woman than I. I also can't believe being on constant antibiotics is good for us either.

    By the way, even with using Vagifem I am 11 years out from diagnosis wih Stage IIIA today! YEAH!!!

    CYNDI

  • wintersocks
    wintersocks Member Posts: 434
    Options

    ck55

    Your thoughts on this terrible subject of UTI's & Vagifem are really valuable and I am now persuaded to give it another go. I spoke with the GP about the Vagifem use this morn and she said she understood my reluctance to use it (I even hate the name!). She added that it increases blood flow to the area and plumps everything up which helps to stop the fragility of the tissue which increases the risk of another infection, The infections are too driving me insane and making me very depressed. So I am off to pick up the rx today. She also added that although I am on prophy abx after a while they don't work so well so a switch is needed so I am to have Nitrofurantoin from today. Cyndi, congratulations on your 11 years good. It's lovely to hear you are well.

    dtad

    interstitial cystitis. Yes that was told to me - that's what I have. it's when the bacteria lodge deep within the tissue and it's hard to eradicate it. I will def look into the Mannose D and the Bladder Q - anything to improve this awful state I am constantly in with UTI's. I am now desperate.

    I will report back - how I am getting along - especially if it helps others too. Thanks ladies I really appreciate your help here.

  • ck55
    ck55 Member Posts: 28
    Options

    wintersocks I am so happy you are willing to give VF (I know you don’t like the name 😉) and I truly hope it works well for you. It will turn your life around! Please let me know how it goes.

    Good luck!!

    Cy


  • balance
    balance Member Posts: 17
    Options

    I was constantly battling UTI's/vaginal atrophy/uncomfortable sex. Everything is so much better with VF.

  • wintersocks
    wintersocks Member Posts: 434
    Options

    balance

    That's good to hear it has helped you. I have started the VF and i am hoping it really helps. I need another name for it tho!

  • 2FUN
    2FUN Member Posts: 789
    Options

    hello ladies. Sorry to join you here!

    After my first BC dx I was dx with endometrial cancer. And B9 growth on thyroid. Now I am lacking all reproductive organs and am on AI's since I was ER+. I have been on prophylactic ABX, but I'm still getting UTI 's. Was getting them during perimenopause, now just more often. I'm alergic to most ABX, so I am a bit concerned about where this leads me. My urologist was saying that for UTI's and ear infections they are starting to not treat them, and just watching the symptoms.

    Hopefully I'm not here often, but something tells me....

  • wintersocks
    wintersocks Member Posts: 434
    Options

    2Fun

    Oh dear. you have had a really tough time haven't you?

    The GP told me that sometimes resistance develops and the abx has to be switched; that may be difficult for you as you say you have allergies but it's worth a mention I think.

    Are you using or has it been suggested that you try a local oestrogen pessary/cream? I am hoping since I have now restarted it that things will improve for me.

    I do get the advice for watching the UTI's and not necessarily rx'd antibiotics but I do feel ours are not the usual infections but are intractable and ongoing. I know if I did not have the abx I would end up seriously ill like I did once before with pyelonephritis.

    There is some really good advice from other sufferers here - so take a look.

    if You are here more often - then sorry - but you are really welcome.

  • 2FUN
    2FUN Member Posts: 789
    Options

    thanks for the welcome wintersocks. I feel pretty strongly about not using estrogen cream since my BC was E+

  • wintersocks
    wintersocks Member Posts: 434
    Options

    2FUN

    I don't know how to go a proper link, This is the latest research. My BC 100 er and I feel reassured.

    imageimage
    Women Can Breathe Sigh of Relief When Using Vaginal Estrogen to Treat Menopause Symptoms
    imageimage
    Hot flashes aren't the only bothersome symptom of the menopause transition. Many postmenopausal women also experience sexual dysfunction and urinary problems that don't require estrogen pills but, rather, can be alleviated by vaginally administered estrogen. A new study shows that, despite previous misperceptions, this treatment option is not only effective but also safe. The study results were presented during The North American Menopause Society annual meeting in Philadelphia.Vaginal estrogen in the form of a cream or suppository is highly effective in managing an array of sexual and urinary problems collectively referred to as the genitourinary syndrome of menopause. Despite its proven effectiveness, the use of vaginal estrogen has been restricted by concerns of women and their healthcare providers regarding its potential link to such serious health issues as coronary heart disease, breast cancer, stroke, and others.However, examination of the data from the Women's Health Initiative (WHI) Observational Study of more than 45,000 participants showed that the use of vaginal estrogen does not significantly increase the risk of heart disease or cancer, including breast, colorectal, and endometrial cancer. Nor is it related to an elevated risk of such other concerns as stroke, pulmonary embolism, hip fracture, or death."These results should help reassure women regarding the safety of vaginal estrogen," says Dr. Carolyn Crandall, lead author of the study from the University of California in Los Angeles."Studies like these are so valuable to help dispel misperceptions that keep women from getting the relief they seek," adds Dr. JoAnn Pinkerton, NAMS executive director. "Women and their healthcare providers need to be armed with the latest facts so they can make informed decisions regarding their treatment options."
  • 2FUN
    2FUN Member Posts: 789
    Options

    argh, this one is the worst I have had ever! Couldn't make it to work.yesterday. hope I can get thru today!

  • wintersocks
    wintersocks Member Posts: 434
    Options

    2FUN

    I hope you are feeling better?

  • dtad
    dtad Member Posts: 771
    Options

    Hi everyone....just want to suggest researching the supplement Mannose-D. It helps bacterial infections. Good luck to all.

  • katcar0001
    katcar0001 Member Posts: 321
    Options

    It has been suggested to me that there is a long discussion about this topic in the "I want my mojo back" topic. But I would also like to join your discussion.

    I am also at my wit's end with recurrent bladder infections and possibly IC. I never had these problems on Tamoxifen; I started on Arimidex 5 months ago. My GP prescribed Vagifem for atrophy, but I am so afraid to try it because my cancer appeared or grew rapidly when I was on bio-identical HRT. When I went to fill the Vagifem prescription, the pharmacist cautioned me that it could cause nausea and breast tenderness because a little bit can get into the system. That scared me, so I didn't buy the Vagifem. And it's expensive! Even for the generic, and I do not have a prescription plan. Yet I am plagued by these UTIs and suffering mightily (waiting for a culture that won't be ready until Monday). I just did two rounds of Macrodantin and then Keflex, and now it is back again. I can barely function. I am taking Pyridium, Mannose-D powder, hot baths and using a heating pad on my pelvic area to get relief. But I would like to find a longer term solution. MonaLisa Touch was also suggested, but I am not sure how well it works for bladder issues, and it is also expensive. Estring and IntraRosa are two other options, but again, none of the internal medicine options have been researched on hormone positive breast cancer patients. I consider this the most debilitating SE I have had on anti-hormonal therapy--even worse than tinnitus, and that is pretty bad.


  • wintersocks
    wintersocks Member Posts: 434
    Options

    Katcar

    I have been reassured many times that Vagifem was safe for me to use despite being highly er positive at 8/8. Like you i was so very reluctant to use it but repeated severe UTI's/IC became absolutely intolerable. A lady on here said that she was putting quality of life ahead of risks and that without Vagifem use the UTIs would continue for her. That was like a light going on for me.I realised i could not continue as i was. I use it every other night now as a compromise. Unfortunately, I cannot comment on the bio - hrt as I know nothing about it. I also take prophylactic abx to keep the UTIs from developing. Has this been suggested for you?

    I have nausea - horribly at times but that was there before the Vagifem and could be from Letrozole and that I am also a Coeliac also other meds I take. I have no breast tenderness (in the one breast) either. I hope my thoughts on this can offer you some reassurance that nausea can exist without Vagifem

    .I was like you - at my wits end. Added to my decision to restart the Vagifem; was a very serious kidney infection: Pyelonephritis from an ascending UTI. I was in hospital over a week on intravenous abx; I was not in ICU but 1 more point on the Early Warning Score and I would have been. That life threatening risk far outweighs the worry of a small amount of oestrogen making it through my system.

    I feel I have made the only choice that I could for me as the misery of repeated infections was causing me great upset. I do not have the added worry of cost as prescriptions for cancer patients are free on the NHS in Britain, and i can fully appreciate how this is an added burden for you.

    Happy to discuss further if it might help.




  • katcar0001
    katcar0001 Member Posts: 321
    Options

    Wintersocks - I am in tears now as I read your response. I have been on a 6th antibiotic now for 7 days and no change, even though this antibiotic showed as sensitive on the culture. My urine culture showed a severe infection of Proteus Mirabilis a couple of weeks ago. It is very, very difficult to eradicate, and I still have the same feeling like I have a cactus up my urethra. I did have a fever and back pain at one point, and thank goodness that improved, but the burning, stabbing feeling has not left. I am scared that the bacteria is completely resistant and that I am going to end up in ICU as you did.

    Your upsetting story underscores a fear I have been harboring--which is that the risk of a life threatening escalation of the UTI is more of a risk than a recurrence of breast cancer at this point. I am sorry that you also have to manage being a celiac. I would think it would be difficult to live well with daily nausea.

    I am on my way this morning to drop off my urine for another analysis. Then I have an appointment with the urologist this afternoon to see where to go next.

    Once the infection itself is gone, I have been looking at getting MonaLisa Touch and then perhaps also using just a tiny dab of Ovestin on my urethra, which was discussed on another thread. I need to get some QOL back as I have very little right now. I figured that was a good compromise rather than doing Vagifem or a higher application of Ovestin.

    I wonder if it's possible to dump Arimidex and go back on Tamoxifen? I had my issues with it, but nothing like this. Maybe the Tamoxifen is no good now. My MO believes that each drug only works a maximum of about two years before resistance occurs. But he has a lot of stage IV patients, and I am not sure if resistance is as high amongst early stage patients. Does anyone know? Has anyone used Tamoxifen, switched to AIs and then thrown in the towel and gone back to Tamoxifen? I would like to complete 5 to 7 years of hormonal therapy if possible. Or, at least, can I take breaks? I read the summary of the Big 1-98 study that said that women who did not adhere were more likely to recur so I have been concerned about taking a break. And for how long can I take one? A week? One month?

  • dtad
    dtad Member Posts: 771
    Options

    Hi everyone...I know I mentioned tis before but has anyone tried D Mannose and/or Bladder Q? I take Bladder Q daily for interstitial cystitis and D Mannose if I think I'm getting a bladder infection. Good luck to all

  • 2FUN
    2FUN Member Posts: 789
    Options

    I take d manmose 1x per day, and times released cranberry 1000mg in am and pm. When I have uti sxs, I increase cranberry to 4x per day and add more vitamin c.

    For all of us with tricky/ not usual utis. Look at how much water you drink. My urologist suggested drinking half your body weight in Oz of water at a minimum. I find when I drink less I get utis every 3 week, when I drink it might be every 6. I am quite heavy and I drink my body weight in Oz of water every day.ten 20 oz BOTTLES MINIMUM

    Katcar, I have never seen any research about changing meds every two years. The little I know about how they work makes me think that is not right, but could be due to your mo experience with stage 4 pts.

    A second opinion from another mo might be good.

    Does anyone have bowel problems too? I wonder if my loose and frequent stool are led ing to more potential bacterial invasion of my urinary tract.

    Keep us posted on your progress/status.

    Hugs to all with "cactus bladder"!

  • katcar0001
    katcar0001 Member Posts: 321
    Options

    Cactus bladder, lol.

    Unfortunately, D-Mannose is ineffective against P. Mirabilis as well as cranberry. There has been a study showing the cranberry can slow down the swarming action of P. Mirabilis in the dish, but the concentrations of cranberry powder were higher than what would typically be found in a human body. I have been taking cranberry capsules, but I think it just irritates my bladder more than anything. However, both D-Mannose and cranberry work quite well to help prevent e.coli UTIs. I am curious about BladderQ and will look into that.

    2Fun, your advice is good about drinking plenty of water. I think the other important thing for me is to remember to pee often. I get busy and hold it sometimes, and this is not a good idea! For some reason, due to the Arimidex? or age?, I have lost the signal that I need to go, so I have to remind myself to go every 2 hours.

    My urologist took me off the antibiotic yesterday, and once it is out of my system, I need to go back for another culture (#3). This bacteria is like Jason... it just keeps coming back... eeeh, eeeh, eeeh, eeeh. And it does feel like someone stabbing me!

    Well, I have not discussed it with my MO, but I am taking a wee break from Arimidex. My MO just does not get these female issues, and I am trying to get an appt with a woman onc to get another opinion. I don't know what is the less of two evils, trying a bit of hormone in my vaginal area or taking a break from Arimidex. I am choosing the latter.

    Yes, good luck to everyone in managing this complex issue!



  • 2FUN
    2FUN Member Posts: 789
    Options

    Katcar. I have been thinking about the same thing. I have lost estrogen due to hysterectomy /endometrial cancer. If I do vaginal estrogen then I increase local estrogen. If I decrease letrozole, I decrease systemic estrogen. If I get to the point I have to chose I will stay on letrozole.

  • reckless
    reckless Member Posts: 50
    Options

    I have a question for those of you who take Bladder Q and are er+. I checked the main ingredient Quercetin on MSK website for herbs and supplements. It is stated that

    • Quercetin was shown to worsen estrogen-induced breast tumors in rats.

    Any concerns? I am having frequent urination since my ooph 1.5 months ago, but no UTI. My gynonc's NP suggested that it's due to low estrogen and offered an estrogen ring, which I declined, hoping that my body will adjust with time. Tried pumpkin seed oil for 1 week with no effect so far. Thought Bladder Q may be a safe option until I checked it on the above mentioned site...

  • 2FUN
    2FUN Member Posts: 789
    Options

    Reckless, how frequent is frequent urination? If you are drinking a lot to keep your bladder flushed, you will pee a lot.

  • reckless
    reckless Member Posts: 50
    Options

    Good question... I need to start taking notes. If I had to guess, every 2 hours on average, sometimes more often. I drink the same amount of water as before the ooph.

  • 2FUN
    2FUN Member Posts: 789
    Options

    every 2 hours is not that often. When I have a raging infection it's every 5 to 10 minutes. You should drink enough water that your urine is very diluted. Should almost be no color in the toilet

  • dtad
    dtad Member Posts: 771
    Options

    reckless...unfortunately I have been suffering from interstitial cyctitis for years. It's horrendous! I'm more concerned about my QOL than if it increases estrogen in rats. I've tried everything including prescription Elmiron and the Bladder Q is the only thing I get relief from. So that's just me and my circumstances. We all have to make our own informed decisions. Good luck with yours. Happy New Year

  • katcar0001
    katcar0001 Member Posts: 321
    Options

    I have been researching quercetin, and most of the studies and literature say that it inhibits breast tumor growth and even induces apoptosis. "... quercetin inhibited breast cancer cell proliferation even in the presence of high levels of estrogen,"

  • reckless
    reckless Member Posts: 50
    Options

    Thank you, ladies, for responding. I guess my problem is not that bad... If it gets to the point 2FUN described, I won't hesitate to take a Bladder Q or estrogen ring. Happy New Year, everybody!!