FEMARA
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FarAwayToo - Yes you can request that your pharmacy order you in a specific genetic brand. No need for dr to write it on the Rx. It does take a day ir two fur then to get it in so make sure you refill when you have about 5 days worth left.
Natemax - Yes its a common side effect. The question becomes: is it the letrozole or is it the lack of estrogen that causes it? You can ask your dr to try one of the other 2 AIs and see if there's a difference for you. In the meantime, taking curcumin everyday can help with the inflammation and pain. Make sure you get a good brand with high bioavailability though. I use the Solgar brand.
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I have felt the all-over joint stiffness since Letrozole day 3.
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Lanne - I have been on letrozole for 8 months. My joint pain -- especially in my hands -- is much better today than when I started. I seemed to be much improved after I started taking the supplement Turmeric after reading about it on this site. Might have been just a coincidence or a placebo effect but I am much better. Polly
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Hi. I had my first Zometa infusion today. If I am going to get the bone pain, when will it start. Right now the are heavy feeling and hurt here and there. Tolerable. Will this change. My doc said nothing about taking Tylenol as a preemptive steike
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I took Tylenol the morning of 2 Zomets infusions and did not experience pain. Given that it is intravenous, I think you would feel it in the first day or so. Unless Dr said not to, you could take Tylenol now?
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Bye, be sure to drink lots of water. Three quarts every 24 hrs. My pain began the next morning but I was in terrible condition. Now I just feel flu like and heavy legs butit gradually leaves toward the end of the week. Water helps with side effects but it is a must for kidney functions. Rest. You'll do fine . Hugs and peace for your night. Jo
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I guess I will be leaving the Femara/letrozole site. I saw my med onc today, for the first time since the first appointment with him on Feb 1, 2018, one week after my surgery. I have seen the nurse practitioner since (3 times). I have been on letrozole since 3/23/18, and have suffered joint and bone pain and stiffness. Hot flashes, thinning hair, cognitive effects are also present, but manageable so far. I have found my own regimen to live with the pain: CBD oil, turmeric, magnesium, Omega 3, Tylenol around the clock, and tramadol for the worst times. I also walk, do pool exercises, and stretching. Today, the doctor switched me to Arimidex/anastrozole, against my wishes. I argued that he had told me that letrozole is the best of the AI's to prevent cancer and that side effects among the AI's are pretty similar. I said I did not want to change unless he insisted. He did. He said that "just as some people like Coke and some like Pepsi, some women do better on one AI vs another." (I though it was a lame comparison.) My CA 27-29's are increasing (3 tests since February), but he said we will recheck in 6 weeks, again. So, I guess I head to the Arimidex group and hope for the best. Best wishes to all of you here. Sometimes this journey is discouraging.
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Best wishes. Hoping you tolerate that one better!!!
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Thank you, KBeee!
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Thank you, KBeee!
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Hi - for anyone without prescription coverage, in between coverage, or with not great coverage ... I recently filled a Cymbalta prescription using GoodRx.com as I'm uninsured for the month of November. Anyone can use the service - you just need the prescription and then the GoodRx purchase code to show your pharmacist.
The site will show you current prices at most of your local pharmacies. I was able to refill at my local Safeway market, saving $60 from what my original CVS pharmacy was going to charge me w/o insurance.
The price difference for Letrozole on GoodRx in my area is between $11 and $114! You can ask your current pharmacy to transfer your prescription if you find a cheaper price.
You may also be able to save money on GoodRx by changing your dosage - it was A LOT cheaper for me to buy 60 pills at 20mg of Cymbalta than 30 pills at 40mg. I just had my Dr write the Rx to take 2 pills of 20 mg a day instead of 1 pill of 40mg. Since I changed my dosage, I had to ask my Dr to call in a new prescription but she was happy to do it for the savings. There is also savings if you buy more than one month's worth of pills at a time.
(I have no affiliation with GoodRx except as a new customer that saved herself $95 on her family's prescriptions. woot woot!)
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Has anyone had any issues with mouth sores? I have been on letrozole for 7 months and they seem to be increasing. I’m not sure if it’s the medication or something else going on.
Thanks
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I was taking the Accord brand of letrozole and doing pretty well; last refill was from Apotex. Anyone have particular experiences (good or bad) with that manufacturer?
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Donnamz - I never experience sores but I had dryness. I kept a water bottle by my night stand to take a swig during the night. Did you try using a mouth rinse?
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I have found Biotene tooth paste and mouth wash very helpful for dry mouth. It's usually not with the regular toothpaste so you may have to ask for it the first time. It also comes in a nice little spray bottle that fits in my purse. Of course, drinking lots of water doesn't hurt any of us either.
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I’ve been using sensitive toothpaste and rinsing with salt water. I may try another rinse. Thanks
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new info from article posted on bc.org
The American Society of Clinical Oncology (ASCO) has updated its guidelines on adjuvant hormonal therapy, recommending postmenopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer that has spread to the lymph nodes (node-positive disease) be treated with hormonal therapy, including an aromatase inhibitor, for 10 years after surgery. Doctors call taking hormonal therapy for 10 years after surgery extended adjuvant hormonal therapy.
https://www.breastcancer.org/research-news/asco-recommends-extended-hormonal-tx-for-some
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Donnamz, my onc prescribed an oncological mouthwash from the pharmacy when otherOTC stuff didn't work. I was better in 24 hours.
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Donnamz, try a mouth rinse with salt AND baking soda. I had bad mouth sores at the tail end of chemo and this worked for me. I think it was 1/2 tsp baking soda and 1/4 tsp salt in 8 oz water. Swish morning and night at least. This helped heal and prevent new sores for me. Mouth sore are miserable!!
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Thanksso much for the suggestions!
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Hi, I was just reading the posts about mouth sores and dry mouth while on letrozole. I've been on letrozole almost a year and among other things, am experiencing extremely chapped lips. My MO says it's not the letrozole, but I took a break for a month (because of joint pain) and my lips cleared up. Within a couple weeks of starting back up with the letrozole, the chapping, and cracking in the corners of my mouth, is worse than ever. Has anyone else experienced this? I'm using very gentle formula lip balm and coconut oil, but not much help.
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I have been on Letrozole for three years and just started to have chapped lips and sores in the corners of my mouth. Never thought about it being a side effect of the Letrozole. I have been dabbing a little antibiotic ointment on the corners but it doesn't seem to help
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When we get old wedry up dueto low estrogen. Letrozole reduces estrogen. It’s a no brainer. Estrogen is everywhere in our bodies. Inour brains, our eyes. It’s no wonder we have all these sypmtoms when estrogen is reduced
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Bootscootin...sorry you are going through this. IMO it is a side effect of the letrozole. I went through this, only it got so bad that I could not even eat or drink without pain and burning! After going from one dermatologist to another someone told me to try anti fungal vaginal cream. I know it sounds crazy but after a few applications it started to go away! It happens occasionally now and as soon it begins I apply the cream and it goes away. Please try it. I wouldn't want you to go through what I did. I had it when we went on a trip to Hawaii and it basically routined my trip. Also do not use antibiotic on it, it might make it worse. Good luck and keep us posted.
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Dry mouth is a common side effect and as a result bacteria can build up and get trapped. I have to have my teeth cleaned every three months. It has cured my gum bleeding and mouth sores. My dentist said its very common while on these types of meds.
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Thanks, dtad. I will give that a try
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Hi everyone - I have been on letrozole for 1 year. Has anyone had their cholesterol go up because of it? I had my cholesterol checked right before I went on letrozole. It was 156. Now after a year it has jumped to 196😳. I'm just afraid it's going to keep going up. I'm lucky that I have a high HDL ( good cholesterol) but still I don't like the 40 point jump.
Nancy
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Nancy2581---I didn't do an AI but did 5 years on Tamoxifen. My cholesterol was 176 when I started and 222 by the time I finished! And that was with me finally joining the gym and exercising. My doctors never worried because they said these drugs can cause an increase in numbers and they'd probably drop when I stopped. Well, I finished back in Feb and had my cholesterol checked 2 weeks ago and it was already down to 202! So I anticipate that by next year it should be back down around my normal. So for now, I'd just watch what I eat and get in some regular exercise so the numbers don't worsen. And check them every year to make sure you're on track.
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thanks lala1. I just hope it doesn't go up 40 points every year 😳. I was on tamoxifen for 2 1/2 years and luckily it didn't affect my cholesterol. It affected my Pap smears though. Grrrr - just can't win
Nancy
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Nancy - I haven't experienced that problem but I heard it was one of the side effects. My Onc and my Primary Doc would check it every year every six months.
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