Recurrent Infections
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At Mayo, they told me 60 is ideal, but cant seem to get past 45. I guess thats just me lol. I am 56. They had me in the high risk group (every 6 month f/u) because my tumors were high grade 3. They do mri bc I have extremely dense breasts. I expressed concern over the long-term effects of gadolinium, so they are switching me to mammogram with iv contrast. Supposedly as sensitive as mri without the possible negative long term effects as gadolinium.
I am so nervous about going to once a year follow up.
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ubershop7...We are the same age...cool (well, I will be 56 in November). Hold up....there is a mammogram with IV contrast option instead of MRI? That is magical and something I will keep in mind. I can imagine that going from every 6 months to every year is disconcerting. Make sure you talk to your dr about your concerns. My D level is higher than it has ever been and yet I have done nothing different. Weird, I know.
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I rinse my peri bottle with the hottest tap water and give the nozzle a quick wash with soap after each use and leave it apart to dry on its own towel. I don't want it to get moldy like stuff in bathrooms tend to get.
Fill it fresh each time with body temperature water.
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ubershop7 - I've read many places that they just can't settle on an ideal, but I do remember reading something about 60 being what some believe is right. Also, I had thought MRI's were essentially harmless, as no radiation. This is news to me, although I only had the one initially when I was first diagnosed.
cm2020 - It's funny about age. When I read that someone is 56, for half a second, I start to think, "Oh, they're about my age", and then I stop and remember that the next milestone I'm looking at is 70, and someone who is 56 is no longer "about my age". I've been meeting more 50 year olds these last couple of years that are looking relatively young to me, and I don't remember feeling like I still looked that young when I was that age. My father used to tell me that the years between 35 and 50 just whizzed by and to be prepared for that and I was, but now I see that it just keep going. It all (time) goes faster and faster every year; so much so, that I can forget just how old I really am now - Yikes!
If you are vegan then dairy is probably off your list too re vitamin D. I've just been taking 2000 IU's every day, as the dr prescribed, but I've considered the 4,000 that you do. I even have a couple of bottles of that strength lying around. I'm thinking of maybe using those over the winter months, when there is even less sun, and I am more likely to be sidelined from my usual daily walks. I think there are limits to the D though. I read on the Foodforbreastcancer site I think it was, that we can get too much D and it is associated then with metastases. It seems like all of these substances have a "sweet spot" and either too much or too little can be either harmful or provide little or no benefit. If my level was 37 after a year of supplementation, I am doubting that 4,000 will get me too high.
moth - Thanks for the info about the peri-bottle cleaning. I do nasal irrigation because I've been having chronic sinus problems, and I do that with a squeeze bottle. It actually sounds similar. The nasal irrigation bottle has to be washed after each use, but with a drop of dish detergent, and then rinsed with bottled or distilled water, then it goes on a clean paper towel until next use. There is a difference in that the nasal irrigation bottle does get a salt and soda solution put into it, instead of just the purified water, and the nozzle actually presses inside your nose a bit. All of these things add up though, and it can seem like so much of this becomes just a hassle to manage these side effects. Sometimes I think half my day is spent managing side effects or taking more time to walk and cook better food in hopes that it will keep the cancer down. Most of one's life can become consumed by all these, "just one more thing" things. On the one hand I think if it all helps me stay alive, it's worth it, but on the other I think, "sheesh!", there's got to be a better way!
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ubershop7.....Time really does go incredibly fast. It is scary. I don't feel that I look young at all. The last little over a year on Letrozole has aged me so much. That damn drug better keep cancer away cause it is wrecking havoc on my body. It's funny you have to remember you aren't one of the 50 somethings because I have to remind myself that I am not part of the upper 30s-mid 40s folks. My MO knows how much Vit D I am on and she hasn't said anything so I am just assuming it is an okay dose. You are right that so many things have a "sweet spot" for dosing. Ask you MO about increasing your Vit D and see if they approve it. I agree that doubling the dose will surely not get you too high. But I think you would feel better if you confirmed it was okay to increase it with your MO.
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Thank you ARmom4, cm2020, and saltmarsh, for sharing your experiences. I hope it's not internal cystitis, but that would certainly be preferable to another cancer. I saw the PA at the specialty clinic today and renewed my topical estrogen prescriptions, so hopefully that will help, even though she said those tissues all looked pretty healthy. Ironically, my symptoms had almost completely cleared up, and after the visit/exam I've again had that constant feeling of needing to pee. Since the previous flare-ups have started after sex I am really starting to wonder if the area has just gotten really sensitive to being handled. Would that also be a symptom of IC?
I haven't seen any blood in five days, but am supposed to get one more urinalysis. If there's more blood, I'll have to do the CAT scan, since she said nothing she saw would lead her to expect me to have blood in my urine at this point. I'm not sure what to hope for at the moment; just sick of the symptoms, dreading the idea of yet another series of medical tests, and really really hoping whatever it is isn't cancer.
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Threetree, I'm sorry I didn't see your post earlier. I usually only take the d-mannose when I feel I pee more than usual, though this month is fishing season and I've been taking it daily because I don't want to stand on the beach and need to go! I've taken powders and pills and all of them work equally. My neighbor was getting constant (hallucinating from the infection) UTIs and I mentioned the d-mannose. She takes it daily and has not had one since. I think she orders capsules that have cranberry with d-mannose.
To the ladies concerned about estrogen and breast cancer. I was that gal. I did everything to avoid estrogen (coconut oil, olive oil...all worked until 2 years ago). When the bladder issues arose, I spent several months in agony. Literally could not go shopping because I couldn't wait to get from one store to the next, totally not drink any fluids before I left the house, and still always felt I had to go. It was a life of utter hell. I couldn't sleep through the night without going countless times. zero way to live. At some point, we have to choose between quality of life. As long as the moisturizers were working, I was content. When those stopped, it meant I had to do something different. For me, estrogen allowed me to forget I had a bladder. Most studies show that vaginal estrogen is not systemically absorbed. I don't know how accurate that is or if it matters....when your quality of life (and as important as sex is, not being able to leave the house and living in your toilet is more important) is taken away, estrogen is a small price to pay.
Best to you ladies. If you start the estrogen, give yourself time for your tissue to plump up.
UTis have a host of health implications too. So it isn't just that you're peeing too much, which in and of itself is annoying enough. Being on antibiotics affects the gut, how much resistance your bacteria develop to the 'biotics, how long the infection goes on and causes inflammation, kidney damage, etc. I posted about my problem when it first happened (in the worry about recurrence area) and Beesie (our gem!) posted about a study that shows something like 30-40% of UTIs, (even after culture) are missed. If you have fevers, chills, etc., those are symptoms of an infection. Constant peeing can be uti or estrogen depletion...if your tissue has atrophied, no amount of antibiotics or dmannose will help long term. Just my humble opinion.
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cm2020 Hi! It is called CEDM. Contrast Enhanced Digital Mammogram. I had it once during my initial diagnostic tests. It is the same iv contrast that doctors use for vein mapping, cardiac procedures, etc. Its radioactive, but leaves the body quickly. When they administer the iv contrast, theres only a few minutes to do the mammo on both sides before the contrast goes away. Not all imaging centers offer it. The hospital based ones usually do. Same cost as a mammogram. Insurance doesn't cover the iv contrast, which is 60 or 70 dollars.
Gadolinium is the contrast used in mri. I guess the FDA is looking into the safety of it, as it can leave behind metals in the brain? That is why I was not too jazzed about mri once a year.
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Wallycat - Thanks so much for the reply. No problem about you not having seen it. The only ones I really know I get replies to, are the ones I post, because they automatically go to my email. Any other replies that I happen to see to my posts are just random and from cruising some of the posts. It's not easy to know if anyone has replied to a post; especially if it's older.
Good info about the d-mannose and the estrogen. I really appreciate it. I used some d-mannose powder and it did do the job and my fever and symptoms all went away, but I was a mess with anxiety especially (never been so freaky before), brain fog, and joint aches. I think it triggered and enhanced my letrozole side effects in some way. I might have taken too much, but when it got to the idea of just taking a small dose every day as a preventative, I just couldn't bear to do it, after all the side effects I had when I took the full recommended dose. I've been holding my own here ever since that time with just a cup or two of corn silk tea every day. I can't say though, that I wouldn't do the d-mannose again if I got to the point of a fever and real bad symptoms again.
I've had real problems with side effects from all sorts of things over the counter ever since I've taken the letrozole. I don't know if it's just me or if others have this problem too. It's not anything I read about from others on here. To the contrary, most others seem to take a lot of over the counter stuff with no problems. I just get ramped up side effects with everything. If it has side effects, I get them, no matter what it product I take, and they all seem to aggravate the letrozole side effects too.
I'm another Washingtonian, down here in Seattle. Was only ever in Port Townsend a couple of times many, many years ago, and it was lovely.
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Three Tree Funny that you said your more sensitive to all sorts of things now. I experienced the same while on Exemestane. Was real anxious for a few weeks, then all the sudden I started developing a bumpy skin rash from my laundry detergent. Same detergent I used for years. I ended up switching to the detergent that is for sensitive skin, and that solved that problem. Been off my Exemestane about two weeks now, as I completed my 5 years. No withdrawal symptoms to report. Hope I lose the 20 lbs I packed on these past few years. My doctor said my metabolism should go back to normal. hmmmm
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Thank you ubershop7!!!
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No problem cm2020:) What is funny is my MO said at my last visit is that I could discontinue the Vitamin D supps because I was starting to have heart palpitations all the time, which can be a side effect of too much Vitamin D. I had a whole bunch of heart tests...all good. As soon as I stopped the Vitamin D, the palpitations stopped. Yet she also said 60 is ideal? I guess 45 is my sweet spot. I have been taking the vitamin D again because haven't been outside as much. I am in Phx metro area, and it is well over 100 degrees in the summer here!
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I have for the most part cured myself of those pesky UTIs
After each bowel movement I use a baby wipe to clean the area
My uti s were usually or always due to e coli. E coli is in the stool. They have little phlanges and can actually move....esp in our dry environment.
I make a "lotion" for my perineum area. I mix coconut oil and other oils to make cream. I think the batch has shea butter.
Much luck
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Wallycat
Looks like I am going to have to bite the bullet and use estrogen. Your description sounds like me right now (total nightmare). Did you use Premarin? Also about how long before your symptoms started to ease up? I don't think I have slept properly in 2 months (bathroom constantly throughout the night no matter what I do or try).
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ubershop7 - Interesting about how you had lots of side effects from various other products too, when you were on exemestane. I'm not glad for you, but I'm glad to know I'm not alone. It just doesn't seem to be anything others really experience or talk about on these boards. I've been starting to feel like a freak - and a hypochondriac when I tell others about all the side effects I get now, just from things like Tylenol. The drs don't want to hear about it at all, and they start giving me those weird looks when I bring it up. I think it probably has to do with the low estrogen. That low estrogen essentially ages us to way beyond our years and I sometimes think that now, when I take these over the counter products on top of the letrozole, it's like I was 100 and taking them. I would imagine that 100 year olds get many more side effects from all drugs; over the counter and prescription.
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I had my physical with my primary this morning and wanted to share what he told me. First of all, I love this man so much. He is so smart and kind and deeply empathetic. Anyway, he wrote me a prescription for Bactrim to keep on hand in case I get another UTI and he made sure it was for 7 days (not 5 like Urgent Care gave me...which led to nothing but a month long simmering infection). He said that I have vaginal atrophy and 7 days was what I needed. But what I really came here to share was what he said a preliminary recent study found....that lubricant applied outside (like moth shared in a post) was found to be as effective as estrogen for preventing UTIs like we all get. I have been doing that ever since moth's post (thank you moth!) and do find I am more comfortable since doing so. He was hopeful that with everything I am doing I won't get them often but he said he will send me to uro-gynocology if I do and they will take care of it. He agrees with my MO, absolutely NO estrogen at all no matter what.
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trinigirl50....My heart goes out to you. This is miserable as hell and nothing short of pure torture. I hope the estrogen helps you. I was very disappointed that it isn't even going to be an option for me because if nothing else worked you can bet I would try it and hope for the best.
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cm2020 - Thanks so much for sharing what your doctor told you. I'll take it as advice to me too - wink!
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Look up Cystex brand Urinary Health Maintenance. Has D-Mannose and Bromelain which help to decrease biofilm which is implicated in bacterial resistance. Also has an acidifying agent to create an environment less friendly for bacteria to grow.
And of course Vaginal estrogen is safe for even breast cancer patients. Vaginal estrogen is available in two forms, Estradiol, like in Vagifem vaginal suppositories and Estriol, available OTC on Amazon as Bezwecken's Vaginal suppositories.
I will attach a couple studies showing vaginal estrogen is safe for bc women. And another option is DHEA, can be really helpful for the vaginal atrophy which is associated with bc treatments.
https://www.sciencedirect.com/science/article/pii/S1526820917300952
https://journals.lww.com/menopausejournal/fulltext/2020/05000/efficacy_and_safety_of_ultra_low_dose_0_005_.7.aspxhttps://ascopubs.org/doi/full/10.1200/JOP.18.00710
https://www.breastcancer.org/research-news/vaginal-estrogen-not-linked-to-high-risk
https://clinicaltrials.gov/ct2/show/NCT04493333
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5754227/
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There is a 2019 asco clinical review on this topic https://ascopubs.org/doi/full/10.1200/JOP.18.00710
it includes discussion regarding the safety of vaginal estrogen therapy
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Hi Moth, that’s the one of the same articles I posted above. I think it’s very helpful to read.
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Well, we have certainly fully explored the uti topic lol. Some great suggestions! Thank you, all:)
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