FEMARA
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moody blues...that is a classic symptom of neuropathy. Heat exacerbates it. You also may find some relief from a drug like Neurontin. Good luck and keep us posted.
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Thank you Dtad for the info.
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I get the "itchy" problem with every hot flash. I just assumed it was part of the process. It reminded me of being in a super hot sauna - the kind where they provide willow branches that you can use to gently whack yourself to scratch the itch. It was my understanding that, when you get super heated, your pores open up so wide that they feel itchy. So, I just figured that the itchy feeling was just part of the hot flash process.
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Hmm Midwest, interesting thought.
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The science on hot flashes is that the hypothalamus mistakenly senses that our temperature is rising and we need to cool down. In response, the blood vessels near the skin's surface dilate pretty quicklyto help let off/dissipate heat. The result is the hot feeling all over. This is why we can feel the heat on the outside of our skin (the skin surface temperature change can be as much as 8 degrees), we may begin to sweat (or get drenched in sweat), but our core temp doesn't rise.
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Lula, that may be why I itch when I get heated up... because of the blood vessels dilating!
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I started letrozole about 6 weeks ago and have been getting all sorts of urinary issues = pressure, frequency, you name it. I don't have a UTI. Is this a common side effect? Any suggestions?
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hi mudd- it is not uncommon. But just to be sure, did your dr do a urinalysis with reflex culture if it was negative? If not, that’s step 1. If you’re saying it’s not a UTI because you just finished a round of antibiotics for a UTI, it can still be one, in which case a different, broader spectrum antibiotic may need to be prescribed. If you haven’t had treatment for a UTI recently and both urinalysis & culture were negative, It could be vaginal atrophy starting from lack of estrogen. But it’s only been 6 weeks. Not that it couldn’t start that quick but it’s less likely. Sometimes the flora in our urine/bladder/urethra gets messed up especially with all the meds we’re taking, procedures we’re going through. Taking Uricalm with mannose-d everyday can help. It’s important that it’s the one with mannose-d and not the maximum strength one. If you need to take something for the urgency, try taking some Cystex as well. I took Cystex for a week and Uricalm for 1 month and it helped greatly. If uricalm does not help, you may want to make an appointment with your GYN for further evaluation,
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mudd, you are not alone! I am experiencing the same bladder symptoms, and it's very uncomfortable. I blame it on the letrozole, as I never had a problem prior to this. Dr. prescribed myrbetriq which has helped. I took d-mannose for 6 weeks, and didn't help at all, as that primarily removes only e coli bacteria from the urinary tract. Had 2 cultures, both negative.
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mudd...so sorry you are suffering. The answer is yes. It can be a side effect. Its from lower estrogen levels. It might be interstitial cystitis. The symptoms mimic UTIs but there is no infection. Let me know if you want more details on how to treat it. Good luck.
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Thanks so much for your replies!! Any suggestions would be appreciated. I'm going crazy. I have an MO appointment in two weeks and I'll call the gyn on Monday. Who treats this - which doctor but any safe home remedies would be appreciated.
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Mudd
Maybe it's an AI in general side effect as I had this on Aromasin. For several months. I took Quercetin for a couple weeks and it seemed to clear it up. Also, make sure you drink lots of water on AIs as they dry everything out. Currently battling severe dry eyes, especially at night.
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I saw a gyn for the "privates" issues. She found a staph infection. MO also said not unusual as the vaginal juices dry up from the AI's. Is uricom over the counter?
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nanna...a urogynecologist is the appropriate doc to see. Quercetin is good for maintenance and D Mannose for acute symptoms. I know exactly how you feel
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taco- yes Uricalm is over the counter. You can find it in the women's products section of the pharmacy. Make sure it's the one with D-Mannose written in the right lower corner. They have another formulation but it does not have the d-mannose.
Another component to all this that you can ask your GYN about is the tissue in your urigenital area inside and out can atrophy. The top of your vaginal wall is also the bottom of your urethral wall. So it can have a direct effect on urinary tract if vaginal wall is drying out/atrophying which can cause those symptoms. If the Uricalm and/or Cystex doesn't help, definitely see your GYN or a URO-GYN. My GYN told me use it or lose it. The more intercourse you have the better as it will help keep things supple. She also said to use lube if it's uncomfortable and “Don't tell your husband I said use it or lose it or you won't be able to get him off you -LOL!" I have a GYN with a great sense of humor. She and the GYN I saw in LA both said if atrophy does occur there's a new medication out for it called intrarosa. They both do not advocate giving any hormones to ER+ BC patients, but both were ok with this one as it effects only the localized tissue in your vagina.
Hope this helps!
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Lula - LOL! Sadly, my DH has had ED for years from a bad ticker and I've never been a vibrator kind of gal. But I will look for the Uricam.
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taco- LOL! I feel your pain. DH and I can finally see the light at the end of the tunnel of having kids that live at home and we're excited about having the house to ourselves in just a few years. We had our first child very early in our marriage and our second one came 10 years after the first, so we've never really been able to be intimate at the drop of a hat wherever whenever. Then ED hits my DH due to a motorcycle accident - Vitamin V was a godsend - but now that we have a solution for that my sex drive is gone, gone, gone from oophorectomy + AI therapy. It takes a long time to get revved up and all the usual things that used to work like magic no longer do. And here i am with a smokin' hot body post DIEP flap recon. Seriously can't win for losing. If it wasn't so tragic it would be funny. 😫
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My doctor suggested the probiotic for women called Fem-dophilus. It is supposed to help both vaginal and urethral dryness. Took my first one today. I've also been using Premeno Duo with limited success.
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So I have been on letrozole for about 7 weeks now. I had my base line bone density scan done (don't know the results yet) and my cholesterol levels checked. My cholesterol levels are off the chart! They read as follows:
- Cholesterol 5.44
- LDL 3.62
- HDL 1.51
- CHOL/HDL (risk ratio) 3.6
- Non HDL 3.93
- Triglycerides .68
At least my triglycerides are in the normal range. I have already stopped consuming alcohol last year, I eat a mediterranean diet, I've already lost 30 lbs, and exercise regularly. I fear that my MO will have to take me off letrozole b/c of the high cholesterol. I really don't want to go on tamoxifen b/c of the depression side effect as I already deal with major depression. Anyone else facing these decisions? Any insight would be helpful:-)
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@Roaming_Star - Please be assured that your lipid panel is far from "off the charts." I would be very surprised if your MO even raised an eyebrow at these numbers. Mine are much higher and my MO office only commented that elevated levels could be a side effect of letrozole. There was zero discussion of a possible change in my treatment.
I made some guesses and plugged your values into a couple online cardiac risk calculators. If your blood pressure is normal without medication and you are not a smoker or diabetic, your cardiac risk is very low. I got 0.8% from one calculator as a 10-year risk of heart disease or stroke and 1% from another. Try this for yourself with your actual inputs and see what they say.
One other point to consider is whether your weight loss is recent or even currently ongoing because that alone is enough to raise your lipid panel. A better value will be after about 6-months at a stable weight.
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mudd I get weird yeast infections that kind of feel like a UTI. No itching etc. no classic symptoms at all and hardly any discharge. Could this be what is happening? Maybe ask for a dose of diflucan and see what happens.
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Leydi - thank you for your insight. I sure hope it is nothing to worry about! I was so disappointed to get these results as I've been working so hard to heal and get healthy. The last thing I want is a complication.. You are right I don't smoke nor have diabetes. I will search for the risk calculator on line.
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Leydi - you were sooooo correct! I was using a different formula to interpret these results! Boy do I feel like a dough head! But I'd rather feel like a dough head than panicked! Thanks for pointing me in the right direction!:-)
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Roaming Star, I'm a clinical laboratory scientist, retired for 5 years, and I've never seen lipid panel results expressed like this. What are the units used?
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does anybody on here know anything about an online test called predict 2.0? I saw someone reference it on another board. It's a free computer thing where you just enter your information and it gives you some idea of how much your anti hormonal will help you. I'm really skeptical because I got on there and entered my information and it basically said my anti hormones are only helping me by 1%. However my onc doctor acted like anti Hermanos were definitely the way to treat my cancer as it was highly estrogen and progesterone positive. Her2-negative. And grade one. Also stage one. Negative nodes. I do have a lot of side effects. So quite frankly this has got me questioning everything. I don't want to stay on the meds if they're only helping me by 1%. I did have onco type DX and my score came back at a 9. I was told that meant my risk of distant metastasis in 10 years on anti hormonal was a 7%. It also showed that chemotherapy would not be very helpful. What I'm questioning is what that percent of metastasis would be if I did not take anti hormonal. Seems to me it doesn't address that. I'm on zoladex monthly shot and daily letrozole. Anyone know anything about this?
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the problem with a lot of these tools is there is only so much information they'll let you put in. Predict is missing rads, no selection for certain chemo regimens, no oncotype score, no selection for SERM or AI, etc. and it only gives survival stats which are different than recurrence and/or mets risk stats. And on survival/mortality stats it is typically all cause mortality, not death from BC. I want to be here in 10 years, but I really really want to be here without mets or recurrence. I think you have to do risk calculations for all of the above and see what answers you get collectively.
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Predict results are classified in 4 categories:
1) just surgery with no adjuvant treatments (so no rads)
2) benefit with adjuvant anti-hormonal treatment
3) additional benefit with adjuvant chemo
4) additional benefit with adjuvant trastuzumab
Chemo selection options are “none, second, or third"
I've included a screen shot of the questions and results from Predict with random advanced stage stats put in below for reference to make all categories show up in the bar graph.
In the end, there is no one predictor tool that will give you the clear big overall picture of risk of overall survival rates + recurrence rates + mets rates + mortality rates due to BC (vs all cause mortality) all together in 1 result. Several different predictor tools are required.
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ok cool. That is what i was wondering is if it were accurate. There was also no place for multifocality which I have. Good point about it only talking about survival and not reccurrence. I also would like to still be alive in 10 years without mets or recurrence.
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my bad! AI brain hits again on the herceptin. I corrected it in previous post
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gkbuser, I have similar stats as you, except I had grade 2 and an oncotyping score of 14.
The last time I looked for the Predict site, I used Google and I found a site that had numerous predictors and a plethora of information. I don't remember if I bookmarked it or not. I'm not on my computer now.
Anyway, I talked to my oncologist about it and he emphasized that it predicts survival, but not necessarily no recurrence of breast cancer. But even so, my numbers also come out to a 1% increase of survival at 10 years. It comes down to quality vs quantity. Do I want to live 10 years in pain and with other side effects, including brittle bones that increase risk of breaking if I fall, or do I want to live 10 years pain free and able to enjoy life. I'm 66, so my perspective may be different than others.
Right now I'm on Femara for the second time. But I've only been back on it a2 weeks. The pain is back, but I'm managing it so far with essential oils and nightly ibuprofen so I can sleep. As long as I can function, sleep and manage pain, I'll continue to take the Femara. But if my quality of life deteriorates again, I'm going to go without.
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