Recurrent Infections
I finished chemo this past February and since then I've had two UTIs and a bad skin abscess. I just finished the antibiotics this past Monday and today I have symptoms of another UTI!! It almost seems like the same infection that isn't going away, although there was about two months between the last UTI and the skin abscess. They did a culture on the abscess and saw "scant" bacteria. But I didn't generally feel well and was off work four days. I'm really frustrated with this, anyone have info or feedback on recurrent infections post chemo? I'm clean, shower everyday, still wear a mask, am generally careful.
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Hi Suzmaree,
Was your abscess in the perineal area or somewhere else in the body? Have you had urinary cultures every time?
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Skin abscess was in the middle of my back, dormant existing cyst that became badly inflamed. i have a smaller same type of cyst under my arm that became inflamed at the same time as the one on my back but didn't need medical attention. The other was lanced and drained twice, packed to facilitate draining.
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yes I have had recurrent UTIs in the last 8 months I have averaged one a month. I did try hiprex but moving forward I won’t bother and go straight to the urine test and and antibiotic to clear it. I like you think several have been the same infection that has not been resolved. I haven’t had one for about 6 weeks so fingers crossed I have it under control. Good luck!
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Ugh. I'm sorry for your frustrations, but I am glad it's not just me!! 😣 for what it's worth, talked to a coworker today who's having the same problem and she never had chemo. she said takes the antibiotics and is good for two weeks, then it comes back. makes me wonder if in their panic to not create more resistant bacteria they're using less effective antibiotics generally.
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I've had a problem with UTIs my whole life. A month ago, I woke up with uti symptoms. So, went to the Dr, did a urinalysis. No infection. Felt better the next day. So, I just thought, "that was weird" and moved on. Last week, same thing happened. I went back to the Dr. No bacteria again.
He said he thinks I have something called Interstitial Cystitis. Basically, UTI symptoms with no infection. Its a chronic condition that flares up every so often.
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Good to know, thank you!
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ARMom4 how frustrating! But as Suzmaree said good to know it can happen. That’s what these forums are all about. Sharing, so thanks both of you
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Bladder urgency and all the classic UTI symptoms can be a side effect of low estrogen. It happened to me, for sure. Culture showed no bacteria so no treatment was offered except for vaginal estrogen. It changed my life. If I find myself peeing a bit more than usual, I take d-mannose for a few days and it goes away. D-mannose can help with UTIs, is over the counter and may make a difference for you.
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Wallycat - Is there a particular brand or form of d-mannose that you like? I've been using the powder (Vitamin Shoppe) since it doesn't have any additives. I tried a liquid with other things in it and felt terrible. I read that some prefer the capsules, but many say they don't work as well as the powder - way more seem to say they prefer the powder over the capsules.
I'm dealing with what I'm sure is a uti right now. Like you I get tested from time to time, but nothing registers, yet I have all these symptoms. In June and now yesterday, I got a fever and bad body aches with all the other symptoms for the first and second time. In June I got antibiotics, but don't want to have to keep going and getting more, so I tried the d-mannose at the end of June (at the end of the antibiotic course) and it seemed to help, but when I stopped, I started to feel symptoms again within just a few days.
You say you don't take it for awhile; just when you start to get symptoms. Does that mean you are able to go for some period of time with no d-mannose and no symptoms? If so, about how long can you go? What dosage and dose schedule do you use? I'm just very curious about how people who seem to be successful with it use it, what kind, form, dose, etc.
Thanks!
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Vaginal estrogen is not good if you have Hormone positive cancer.
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Vaginal Estriol and Estradiol have been studied in woman with hormone positive bc and were found to be safe due to the low amounts that go into the bloodstream.
So rehab your vagina with some vaginal Estrogen. Significant decrease in the number of UTI’s
After all, frequent use of antibiotics is really, really unsafe. Increased risks of infections like C diff and eventually could have an UTI that is resistant to almost every antibiotic. Then it’s IV’s as treatment.
I know several older women who wound up with UTI bacteria that were resistant to just about every regular antibiotic. They had a really hard time.
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Hi, what they do not tell you during treatment is that the chemo or aromatase inhibitors make you dry. I had 6 utis in a row before I started searching Google for help. Use a moisturizer for "that" area. I started using Good Clean Love, and it works. Replens is good, too, but has alot of chemicals and parabens. Try what works for you. My utis stopped. Cleanse and moisturise. Wish someone would have told me that early on lol
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So update. I have had two more infections since my original post, making it approximately one every three weeks since March. i have an appt with doc September 17, who I think wants to refer me to a urologist. What you said ubershop7 makes a lot of sense to me so i just ordered Good Clean Love and feel positive about that. I especially like that it helps restore pH values as I know that's another common cause of UTIs. I am also TNBC so could try estrogen if Good Clean Love doesn't work, but I really don't want to see yet another doc if I can avoid it.
Side note. I was feeling very depressed and hopeless yesterday because of these constant infections, the headache of having to do UAs, be on antibiotics, the effect the feeling of being fatigued and unwell from the infections has on my job, dealing with being sick from chemo and now infections for the past year, etc. I even made an appt with a therapist for today, I was feeling so defeated. That's unusual for me because I work in behavioral health with individuals with severe mental health issues and I usually have a high tolerance for difficult and depressing situations 😉 Interestingly my team now is working with one individual who's just started chemo for TNBC, and another who may have a recurrence of HER2+ in her spine. Those will be challenging for me to witness but I also think I can be a better support for them because of my own situation. My role with my team is peer support so not inappropriate to share some of my experience with them. This month is also the year anniversary of my diagnosis, surgery, starting chemo and that whole life changing journey we all know so well. I think really it didn't all fully impact me until several months after I completed treatment, but that's a whole other thread!! 🤣 I'm grateful for this board and everyone's input ❤
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Ubershop7 - Which of the family of "Good Clean Love" products do you use? It looks like they have a variety. I'd never thought about any of these kinds of products before, but if it would help with the uti issue, I might look into them. Thanks.
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No estrogen for me as a metastatic pt esp since even tho I'm TNBC, one of my biopsies came back slightly er+.
I'm on prophylactic antibiotics. Currently fosfomycin, once a week.
Also use bidet or hand held peri-bottle, not tp. Moisturize. If using liners, consider changing brands as some seem to make it worse. At home I use washable cotton.
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I had my first UTI in over 10 years a few weeks ago. Cleared with antibiotics. Just tonight when it was time to go to bed I am having urgency and not sure if it is another UTI or possible interstitial cystitis. My regular appointment with my MO is Friday and I plan to talk to her about this. I have Azo left over from my last infection and took that. I have also been taking Crancap every day to help prevent an infection. I am so tired and desperately want to sleep but keep feeling like I need to urinate and so keep getting up to only a little pee. I am going to look into the suggestions you all have given. Thank you for sharing what works, I am miserable right now.
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Restore. It comes in a green 2 oz tube. They sell it at Target, Amazon and Wal-Mart. You can also go to their website. Trust me, it works. You have to use it every day, as it doesnt last that long. It used to get so bad and uncomfortable for me, that I had to sit on an ice pack. They make a fabulous lubricant too for romantic times. It might sting the first couple times you use it.
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Yes, Intrarosa was offered to me by my gyn. But I said nope bc I had a bso and my bc was strongly er and pr positive. Was a personal choice for me:) Feeling great and no utis or discomfort since I started a daily cleanse and moisturize routine. I wish the doctors or nurses would have advised me to do this early on. I spent a year and a half being miserable. I am a runner, so sometimes do the routine twice a day. If I cannnot shower, I pour a few bottles of purified water on me down there as I am sitting on toilet. Then put the moisturizer on. Too much info, I know. But it works. Switch to all cotton undies, too if possible. I only use my spanx rarely these days. Hope that helps someone out there:) For the 1 1/2 years that I didn't think to moisturize, I took cranberry pills and it didn't help. Also, the doctor at Mayo said to not take herbal supplements while on AI's bc they have not done research on how certain herbal supps effect estrogen levels and AI's. I do also take a probiotic now and then. The key is to use a moisturizer. All these treatments make you dry, which creates an ideal environment for uti's to develop. If you suspect a uti, get treated for it, but start this routine daily. Trust me:) I just completed my 5 years if AI, and have not visited this blog in a few years. If I can help one person, that would make me so happy:)
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ubershop7...Thank you for all of your wonderful advice! I ordered the Bionourish from Good Clean Love in the middle of the night and it should be here in a couple days. So, am I understanding you correctly that you also got a separate moisturizer to use outside as well? I have my regular appointment with my MO tomorrow. It doesn't feel like I have an infection but I have urgency and overall just don't feel well. My urine stream is also not as strong as it should be. I'm a hot mess right now. Like you, I do wish they would give us more info going into this to prevent these issues. My cancer is also super strongly er/pr positive (both over 98%). Note--this is not caused by sex. My marriage is so broken that it is truly in name only at this point.
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ubershop - Re your desire to help at least one person, you have done that, as you have definitely helped me! I will look into the moisturizer some more - thanks for clarifying which of the products you use. Too much info maybe, but it's just what I needed! The tip about the purified water on the toilet is a huge help. I think I had a uti all last year, but it never showed up on any tests. They kept telling me I had digestive problems, heartburn, etc. and prescribed things like Pepcid and Omeprazole. That all made me worse. Last May I got some antibiotics for a sinus problem, and like magic all those lower abdominal and stomach problems I'd had all year, and that I thought might be undetected uti cleared up too. After a couple of weeks though, it all started coming back and I have been convinced it was a uti (Letrozole induced). I then tried some liquid with cranberry, d-mannose, and hibiscus and thought it was working after a couple of days, but as I continued to take it, it made me feel worse, seemed to aggravate letrozole side effects. Then I tried straight d-mannose. That did the job and cleared up the returned uti (with fever that time) totally, but again, that made me feel awful and seemed to trigger the letrozole side effects big time. After stopping the d-mannose for a couple of weeks, all the symptoms have returned again, so right now I'm back with the old corn silk tea and that does seem to be helping this time, without too many problems. I need something just localized I think, like the moisturizer you've noted, as these systemic things really cause me problems.
cm2020 - You might want to try corn silk tea. I get the "Celebration" brand from Amazon. Buddha Teas makes a version too, but I think it is a bit weaker. You have to order it online, can't find it in grocery stores. Years ago, I got some dried corn silk from an herbal shop in town and put that in a tea ball and that seemed to work too. It's an old folk remedy for urinary problems and more. I steep the Celebration bag for 10-12 minutes and have 2 12oz mugs twice a day. It can help with either actual UTI or feelings like cystitis. Others have luck with d-mannose, and as I told ubershop, the d-mannose did clear up my problems, and many take maintenance doses to prevent recurrence, but it did not agree with me. Lately, I've just been adding the corn silk tea to my daily 2 12 oz mugs of green tea, as otherwise I'd be drinking some sort of tea all day long and I can't do that when I need to go out, etc. They are fine together and I'm seeing results after a 2-3 days of what looked like another uti mess. The one drawback of the cornsilk tea, however, is that it can be very dehydrating and after a few days can wreak havoc with your potassium levels, so you need to make sure your electrolytes stay balanced while using it for any length of time. A cup here and there is no problem. But concentrated sustained use can cause problems.
I'm thinking of purified water, moisturizer, and corn silk tea a few times a week. Just do not want all those antibiotics if it can be avoided, much less all those trips to doctor's offices for cultures that don't always show anything!
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cm2020 - Just saw a little more of what you've posted. It is my understanding that low estrogen causes these problems and as someone noted above, they just don't prepare us well for most of this. Re no bacteria showing in the cultures: I have read online that they've done some studies about this phenomenon and in one study they did some further testing - more refined than what the usual lab cultures do, and in those cases, they discovered that each time the person did indeed have an e-coli (the typical uti bacteria) infection. It had just gone undetected by current methods. I've heard that the tests they routinely use are not super sensitive and that some can be missed. By the time I had a fever, I knew it had to be more than just "cystitis" or digestive problems. I did have sinus trouble at the same time, but I get that a lot and never have a fever with it. I think the fever was due to the lower abdominal problems I'd been having and that it was a uti.
Also, we are encouraged all the time to "hydrate" and push the water and I think it can be overdone and that that too can cause the tests to not show anything. I drink water throughout the day and I've had to make a few trips to the ER when I start to feel really weird (weak muscles, tingling, racing heart, etc.) and it winds up that my electrolytes are out of balance (low sodium and potassium). During some of these trips they have tested for uti's and found nothing, but my urine was almost completely clear from all the water drinking. One time the lab told the ER dr that they weren't even going to bother testing the sample because it looked so "pristine" (more TMI, I know). I still believe that I had an ongoing uti at that time. They just continued to focus on digestive problems and heartburn type things.
My point is that those tests don't seem to be that reliable and I would not just settle for a cystitis diagnosis if things keep going and/or getting worse.
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ThreeTree...Thank you for the advice. I also agree that ubershop has also helped me! I flew to the Good Clean Love site last night to order. I also had some leftover Replens and went ahead and put that in immediately. Vitacost also has the Celebration brand corn silk tea. I have a couple questions. Do you use the same tea bag for the entire day or a new tea bag each time? What kind of taste does it have? I typically only like plain black tea. I also found d-mannose on Vitacost and think I will take it as well, hopefully I will tolerate well. Did you just take the dose on the bottle or is there a recommended amount that is different from the bottle? Throwing everything at this and hoping something sticks and works. I drink about 100 oz of water a day so that should help with the dehydration caused by the tea. You would think it would be enough to keep my urinary tract clear and healthy, but apparently not. I totally blame Letrozole for all of this. I am fighting tears because I just feel rotten....you described it perfectly in your post.
Thank you to everyone who has posted on this thread. I came here in the middle of night hoping that there was help to be found and I wasn't disappointed. BCO ladies are the best!
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ThreeTree...Gosh thank you! That is very interesting and I will definitely keep it in mind. I can't even imagine your frustration dealing with all of that. One infection and this (whatever it is) is enough to push me over the edge. Those of you that have dealt with far worse have all my sympathy. I also hadn't considered that I may be drinking too much water. My labs tomorrow will be interesting because I have increased my water intake since my UTI about 3 weeks ago.
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My current infection initially showed no bacteria but on a longer culture showed klebsiella pneumonia bacteria, which was what my time before this one was as well
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cm2020 - Glad Vitacost has the stuff too. I actually prefer ordering from them over Amazon when I can, but they use a delivery service that does not provide top notch service to my apartment complex and I have lost a couple of packages from Vitacost because of it. They will not seem to use any other delivery service other than OnTrac, so I've stopped ordering from them.
I use one tea bag for each cup of tea, steeped about 10-12 minutes. The taste isn't bad. It's one you wouldn't go out of your way for; it's not like, "Gee, I'd just love a good hot cup of corn silk tea right now", but it's fine and I actually fine it rather pleasant. Light and sweet. Like so many things, different brands and different batches can be a little different. The best I ever had was the stuff I got directly from an herbal store (but had to fill a tea ball, etc.), and even they never had that same kind in again.
Re the d-,mannose, I originally tried a product by Nature's Way called "CranRx". It was all they had with d-mannose at my store at the time I was looking and feeling desperate. It tasted fine, and I followed the directions on the bottle, and for about 2-3 days, I thought I'd found the solution, but then I started to feel bad, just that overall yuck, "malaise", and that something was wrong. The product has hibiscus and cranberry in it in addition to d-mannose, so I thought maybe I was allergic to the hibiscus flower extract in it. I'll never know, but when I stopped taking it, I immediately started to feel better. I decided to try just the powder as reviews I'd read on Amazon seemed to show far more people preferring the powder to capsules. I went to my local Super Supplements looking for the NOW brand of powder, but they were all out and only had powder from Vitamin Shoppe, so I got that. I looked online and at the container for dosage ideas, and settled on about 3grams per day. The container said up to 4 grams a day, but I just had a gut feeling that would be too much for me. I did divided doses, morning and night. You just mix it in a juice glass of water and it is essentially tasteless and goes down real well. It did not act as quickly as an antibiotic, but after a few days, my fever and all the pain subsided. I was just about to a point of thinking it wasn't working, though, and ready to go back looking for antibiotics, when it seemed to finally kick in. Part of me felt better than I had in months, because I'd finally gotten rid of all that pain and "wiped out" feeling that I'd had for months, but then I got terrible letrozole type aches, along with super anxiety and moodiness. As soon as I quit the d-mannose, I started to feel much better. Also, different brands of powder show different measurements to equal 1 gram. I think the Vitamin Shoppe one is 1/2 tsp for a gram, but the NOW powder is a full tsp for a gram, so look carefully.
For the first few days that I took the d-mannose, I also drank a lot of corn silk tea, so might have overdone things, and that could be some of the reason for the bad side effects. I don't know how d-mannose totally alone would have affected me. Also, I read a recent study online that showed that mice, at least, given an "overload" of d-mannose developed severe anxiety symptoms, so maybe I had somehow just overdone it - I was just freaking out over everything and had never experienced anxiety like that. I also read that most d-mannose sold in this country is derived from corn. Well there I was taking corn derived d-mannose and drinking corn silk tea. Maybe too much of something in corn? The FoodforBreastCancer site also notes that corn can act like an aromatase inhibitor on some level, so again, I think that with the letrozole, d-mannose, and corn silk tea all piled onto one another, it was all just too much - but it sure did relieve the symptoms! It's just that a couple of weeks later, they have returned, so now I'm just doing the tea again, and so far, so good. I have felt consistently better over the last 3 days. I was miserable over the week-end. Sometimes I do drink more than the 2 12oz mugs a day of corn silk tea for a couple of days. I'll do an extra 12oz mug in the middle of the day, just to get things going for the first couple of days, then I go down to the two 12oz's I mentioned earlier.
Lots of water can also wash out your electrolytes (esp potassium) just like the tea can, so I have started swapping out some water for electrolyte drinks - coconut water and Pedialyte in my case. I drink a big bottle of coconut water and about 1 or 2 servings from a liter bottle of Pedialyte on the days I drink the tea. Sorry this is so long, but hope it helps. Good luck and I hope something here works for you!
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ThreeTree....This is so helpful! I was looking at the NOW brand d-mannose pills. I saw the Vitacost brand powder but figured capsules would be easier. I'm glad you explained it as much and as well as you did. I very much prefer Vitacost over Amazon too (I only order from Amazon when I have to). Luckily they deliver to me very quickly. I think there must be a warehouse in my state because I get many things the next day even though I haven't paid for next day shipping. It really stinks that you can't things easily and in a timely manner from them due to the shipping provider. I have not heard of OnTrac so that must not be an option for my area. It sounds like it is a good thing it isn't an option.
The tea sounds like it will be pretty easy to drink. Mild and slightly sweet is good. I had forgotten about the Food for Breast Cancer website. Thank you for reminding me of it. It is all such a balancing act isn't it? Fix one thing and something else falls apart. Ugh...vicious cycle. I'm glad you are doing better now and hope that the tea continues to work well and you keep feeling good. You have been so helpful and kind, thank you.
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I, too, thought I had chronic UTI after starting AI, but, turned out to be atrophic urethritis. The urethra contains ER and in the absence of estrogen the cellular lining of the urethra shrinks and gets 'cracked' and susceptible to inflammation and bacterial invasion. Antibiotics made it feel better because of their anti-inflammatory effects, but it always came back. The only 'cure' is estrogen. I put a speck of Premarin cream on the tip of the urethra every night for 3 nights and my urethral lining becomes normal, usually for months at a time. Also have to use vaginal moisturizer as needed. Yeah, my tumor was 100% ER+, but in my case, quality of life was more important! And, all should go back to normal when I can finally go off AIs.
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cm2020 - Glad to help. Also, I forgot to say that I think the 3 grams a day of d-mannose was recommended for about 2 weeks, then some stop altogether (I did and the symptoms returned) or continue with 1 or 2 grams a day to prevent a recurrence.
The tea is real easy and not bad tasting at all, and of course you could always doctor it up with something if you feel the need. You need to drink it for about 5 days I think.
You aren't missing a thing with no OnTrac! We have a mail room here and the delivery people are supposed to leave packages in parcel lockers that we have, but some dump them on the floor. The room is unattended, so anyone could take anything if it's just sitting there. OnTrac also comes around 9-11 pm and then just dumps things on the floor, so the next day when you go looking for your package, it's not there. I'd do Vitacost again in a heartbeat if I could be sure they'd use another carrier. Yes, they send stuff faster than Amazon, and I think they pack things much better also.
Well, with either the tea or the d-mannose I would think you'd have some kind of luck. Some do better with one than the other, and that's probably how it will be for you too.
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To the lady who asked what I use. Goid Clean Love Restore Gel Moisturizer. The lubricant called Almost Naked for intimate times works great. Have not tried the Bionourish. Let me know how it is working out? I use the moisturizer Restore on the outside, then I use the applicator to insert some. The applicator could be a little uncomfortable. I cannot imagine any of the ingredients would cause allergic reaction. Good luck. No utis for me since I started using in 2019. No more sitting on ice packs from discomfort, either.
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My MO did a UA when I saw her today. It was kind of a hot mess. Yet, no blood which was interesting...but so many other bad things in it that I am a bit concerned other damage is being done. She put me back on Bactrim for 7 days. It seems like there is a decent chance that the last round of Bactrim (which the dr at urgent care only gave me a 5 day course of) possibly didn't completely eradicate the infection. She also said they will absolutely not give me any kind of hormonal treatment of any kind, no matter what. I have gotten sicker as the day has gone on so I am very happy to have Bactrim. I have also ordered the Good Clean Love products that you all recommended, ordered corn silk tea, and d-mannose. I am throwing everything at this and hoping something sticks. I was told today that if I get one more UTI then I am being referred to urology. Pelvic therapy was also brought up as a possibility as well as laser treatment (for my vagina if i understood correctly). I was on the verge of tears from both feeling rotten and at how horrible all of this is. My MO said that cancer patients absolutely suffer as a result of both the treatment and the limit on options for relieving the issues caused by treatment. I cried all the way home.
ubershop7....That was me, thank you! I found the Restore at Target today and got it to use on the outside (and have applied it).
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