FEMARA
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I read somewhere on this thread (I believe it was on this thread) about using Intrarosa for vaginal dryness and my gynecologist also wrote me out an rx for it. My GYNO knew I was estrogen positive and we talked about using something without estrogen in it. When I got home I checked it out and found out that for us ER+ ladies it's a no go. Please read:
http://www.breastcancer.org/research-news/intrarosa-approved-for-sexual-symptoms
The active ingredient in Intrarosa is prasterone, which is also known as dehydroepiandrosterone (DHEA). DHEA is a hormone that is naturally made by the body. It is called a “precursor” hormone because it is made into female and male sex hormones — estrogens and androgens — by the body.
Because DHEA is converted into estrogen, there are concerns about the safety of Intrarosa for women who’ve been diagnosed with breast cancer, especially hormone-receptor-positive breast cancer, which is signaled by estrogen to grow and spread.
“DHEA blood levels are associated with higher breast cancer risk, especially estrogen-receptor-positive breast cancer,” said Brian Wojciechowski, M.D., Breastcancer.org’s medical adviser. “It is unknown whether Intrarosa is associated with breast cancer. It simply has not been studied long enough.”
We do know that DHEA will decrease the effectiveness of hormonal therapy medicines. If you are taking an aromatase inhibitor, tamoxifen, or other hormonal therapy medicine to treat breast cancer or reduce the risk of being diagnosed with breast cancer, you should not use Intrarosa.
(edited to show paragraphs for those who are unable to get link)
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the difference on the intrarosa vs say Premarin is that the action of the medication is localized to the vaginal tissues. It is not systemic. Blood levels in the clinical trials were not above the normal range for a post menopausal woman and the blood levels did not rise significantly either. Your GYN would not have written it if they hadn’t already been educated on it from an in service or CME class. And they certainly aren’t going to give you something that they know will hurt you. The medical advisor has to be very careful on what he says and how he says it for legal reasons.
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Hi everyone. I have a few questions, my plan was start Tamoxifen after rads, but to everyone’s surprise I am actually in menopause. So femara it is. I wasn’t as anxious to start Tamoxifen as I am femara. I have had the prescription for a few days and couldn’t get myself to take the pill. I will be starting Tonight. Any helpful hints to help with side effects? Do most take it at night? Do you take supplemental calcium? Any advise would be app
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Lula, I'm not exactly sure what you mean when you said "Your GYN would not have written it if they hadn’t already been educated on it from an in service or CME class". My thoughts are that he had no idea that this product wasn't good for ER+ girls like me. I may be missing your point...you know the chemo fog still hits me at times! Thanks.
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Hi Tkane10
I take my Femara at night. My hospital pharmacist recommended a calcium supplement of 1000-1200 mg plus at least 800 IU If vitamin D3. You can find formulations where they are combined - just check the serving size to know how many to take daily. I also take Loratadine 10 (Claritin) in the morning to combat achey joints although it doesn’t do the trick 100%. If (when) you get hot flashes and if you have neuropathy from chemo, Gabapentin (need an Rx) can help with both. The best thing to do for joint aches is try to get regular exercise. I’ve found that it’s hard to get moving after sitting for even short periods but once I get joints warmed up I’m fine after a few minutes. I hope your SEs are minimal.
Lann
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TaKane - I take my femara in the morning but I don't think it matters - just that you be consistent with the timing. I have minimal SE's and feel much better now that I am getting more exercise. If you have trouble with it, talk to your MO. I didn't do as well on arimidex and made the switch about 7 months ago. But don't get ahead of yourself in anticipating problems. My reading suggests that AI's are easier than tamoxifin.
I had both an achilles heel repair and carpet tunnel surgery before BC. Arthritis in a variety of places but my bone density is very good. I've taken glucosimin and chrondium and calcium with Vitamin D for several years and think it continues to help my joints. Many of my friends are on their second hip and knee and I still have the original set of both.
As I was typing this, I realized that I have "one year down" with the AI's.
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My MO said that a low dose estrogen cream can be used because it doesn't get into the blood stream. I think I need to find a gyn and have an exam.
Tkane10: I take Femara around noon. When I took it at night I had more sleep issues than normal, and it made me feel jittery. I do take Calcium. Both a supplement and one Tums.
Some people have side effects and others don't. I think some depends on your age and your level of activity. My suggestion would be to not going into it expecting side effects. Just be aware there can be side effects.
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moody- the company that makes intrarosa has been very thorough in getting the GYNs educated on this option through inservices and educational meetings. It works different than the estrogen creams/pills and has different labeling than the creams/.pills because of the findings in clinical trials (i.e. no blood clot boxed warnings etc). It's really a novel medication for vaginal atrophy. If your GyN had not been inserviced or attended an educational meeting on it, the odds are that they wouldn't have heard of it yet much less prescribed it. Since they don't have long term studies in women with BC yet the fda requires them to put the statement about BC patients in the prescribing information as is. But when you understand the detailed science behind how intrarosa actually works, the extent of the localization (meaning yourenot getting clinically significant increases of DHEA, E1 or E2 in the bloodstream that can be detected by standard laboratory testing), and the processes involved in vaginal atrophy occurring, you begin to understand why GYNs who don't write estrogen creams/pills for ER+ BC patients are willing to write intrarosa. It's not a guarantee, but I'm betting we will see the BC precaution/warning removed at some point from intrarosa.
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I now remember why I stopped taking Femara almost a year ago. I thought it was when I was taking it at bedtime, but I'm taking it late morning and the side effect of only sleeping 4 to 5 hours and waking up feeling jittery with tingling arms and racing mind has kicked in again. Can't go back to sleep. I just ordered some CDB oil. My friend who has had insomnia forever said she's finally getting a good night's sleep. I'll try anything including going off AIs if it means better quality of life.0
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Thank you everyone for your responses. When my mom started femara about a year ago she was so tired during the day and she was taking it in the AM. I had her switch to nighttime which has helped her. I started last night l. But will switch my times if it makes it so I can’t sleep. I will also get calixum and vitamin D.0
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Lula73 Thank you so much for your detailed explanation, I understand what you're saying now.
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moody- No problem! I feel your pain on the brain fog. It’s like my brain doesn’t process things the same way anymore and i have a hard time finding my words and losing my train of thought mid-sentence. Regardless of brain fog, alot of this can be so confusing especially if you don't have a background in pharmacy or healthcare. That's part of the beauty of these forums - we can ask, comment, share and help each other on this journey. The fda dictates that the medication manufacturers word things in I swear the worst possible way for a non-medical person to understand. For instance, they will dictate that a medication has to have something along the lines of, '...the human relevance of xyz condition seen in rodents cannot be ruled out in humans and the relevance of these results as it applies to humans is unknown. It is unknown if humans will develop xyz condition, and patients should be counseled to be vigilant in identifying the following symptoms and report them to their dr' (inevitably, common things like headache, sore throat, hoarseness, etc are on the list; all of which occur during cold/flu season in fall/winter and during pollen season in spring/fall.
A non medical person would read it and freak out and likely never take the med and complain to their friends that their dr was trying to kill them because the drug company couldn't even rule the risk out in humans!
A medical person would read it and say, 'of course developing xyz condition couldn't be completely ruled out in humans - you can't make everyone on the planet take the medication. The xyz condition developed in some of the rodents (usually 5-maybe 200 rodents total are used in rodent trials) but 0 humans have developed xyz condition out of the 1,000s of who took it for X number of months/years in clinical trials and post marketing timeframes. No problem!'
Anyway, I hope the intrarosa works for you. Let know how it goes. I heard it may even have an extra benefit that would make it the equivalent of a female viagra. Now wouldn't that be something!
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Hi! Since starting Letrozole in Feb. my liver enzymes have increased. Not crazy high but AST 52 ALT 96. My MO doesn’t seem concerned. Just had scans in Feb and liver was fine. Still worries me. Ive gained about 25lbs and feel so bloated all the time. Trying so hard not to freak out
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lesagesj - I started letrozole at the same time you did. I won't be tested until July so don't know if my liver enzymes have been affected or not. But I have not had bad side effects that I know of except achy hands. I am coping with that but liver changes would get my attention like it has yours. Sometimes apparently it makes a difference who the manufacturer of the generic is. Mine is made by Neva. Maybe if you continue to have weight gain and other SE's that bother you, your MO would change your prescription to specify another generic manufacturer or the brand name med Femara. Just a thought. Polly
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I got a letter in the mail that our new insurance company, Cigna, decided to deny the claim for some of my bloodwork as it was deemed not medically necessary based on my diagnosis. Then they listed my cancer diagnosis so it’s not like there was a mistake . It’s not like I stubbed my freaking toe or I had a hangnail. Bloodwork is a necessary evil for many years for Cancer patients. It’s just so frustrating. Dh brought the letter to his HR Person at work. She said she has been hearing a lot of this since they switched but said she will look into it for us.
Im stunned. How does Cigna think my MO can take care of me if they won’t cover all of the labs? What’s next? Will they deny my twice yearly mammos?
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Hello ladies, I just started taking letrozole (generic) a little over a month ago (5 weeks).
If you have joint or bone pain as your main SE can you tell me when it started? Just this week I started experiencing a good deal of it, and I thought it would take a while before it would show up.
I was premenopausal before chemo, but chemo put me in chemopause. After that we decided to keep me there with Lupron shots and start with AI. My main symptoms of menopause were hot flashes, but bone and joint pain just started a week or two ago, and it's getting worse.
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I started Femara on Jan 1st, 2018 but I already had joint pain from the loss of estrogen due to my hysterectomy in July 2017. So Femara has incrementally increased the joint pain, but not by a lot. It was about 2 months into Femara that I noticed being creakier. I notice it most when standing after sitting. Daily stretching and exercise helps me, as does weight training. When I skip exercise or walking, I feel more joint pain the next day.
Hope this helps!
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Elevated liver enzymes- very common with anti-hormonals. All the anti hormonals can cause liver toxicity so it’s important to make sure you’re staying hydrated and drinking 6-8 glasses of water a day.
Joint pain- yes the symptoms can show up even within the first few doses. Curcumin supplements and using/exercising the joints can help tremendously. They are a result of no/very little estrogen for the most part but can also be caused by the fillers used in different manufacturers pills. If curcumin and exercising the joints doesn’t get the pain to a bearable level you might want to ask yo switch manufacturers (you may have to get your prescription filled at a different pharmacy). If that doesn’t help then perhaps switching brands would help.
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faraway, 2 months for me. I am also on lupron. I couldnt figure out which drug it was. I dont know why but I am convinced it is the shot. I am beside myself with bone pain. So afraid it is bone mets. Hot baths help me the most.
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Thanks, gkbuser, Lula and mom-mom. So, nothing out of the ordinary. My MO told me that this joint, bone and muscle pain will get worse but then it will get better. She says she usually sees improvement in SE around 9 - 10 months in. I didn't ask her why it works this way, but I hope she is right.
gkbuser, for me, I didn't see any difference between my chemopause symptoms and what I've experienced after I started Lupron but before I started letrozole. It's the letrozole that's supposed to take our estradiol levels really low, which starts affecting the joints. Until I started it, I had hot flashes and absence of periods, but that was pretty much it.
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thanks faraway.
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Last week I hit one year on AI's. Started with arimedex but was having headaches and have been taking femara for about 7 months. I had arthritis before BC and had been taking chondrodium and glocosin (spell check does't know either of those words) as well as Calcium with Vitamin D. I added generic claritin during chemo and have continued it. I agree with Mom-Mom, exercise has provided the biggest relief for the aching joints. I fired up my fitbit. My goal is 50,000 steps a week and I try to play nine holes of golf and go to stretch and flex class at least twice a week. I also try to remind myself that I am 18 months older than I was at diagnosis. Many of my friends have had hips and knees replaced and I'm still on my original set of each. My hot flashes are manageable but I thought I left them behind 30 years ago!
If you are having trouble with the drug, please talk to your MO. Some of us do better on arimedex and others on femara and I certainly can't see a pattern. What's in the generic (the so-called fillers) also seems to make a difference so when you find a manufacturer that works for you, make certain your pharmacist respects that even if you need your MO to add that to your prescription or to change pharmacies.
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I have been on 3 different AIs in the past 11 months. All of them have caused pain and it's not getting better. Exercise doesn't help, in fact after yoga on Tuesday and a walk on Wednesday, I could barely move on Thursday. I'm frustrated and ready to throw them all out. I'm just so tired of the constant pain. I am trying CDB oil. Took the first dose this evening and it's not helping yet.
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Nancy, I feel for you. I am on a break from my second AI, After the first break from the first AI my symptoms improved significantly after 2 weeks off, and after 3 weeks I felt like myself. I have been off AI #2 now for 2 weeks and I still am having tons of SEs. I see MO in 2 weeks. I am having a hard time working as I need to do PT with developmentally disabled children, run, jump play on the floor and transfer kids in and out of their wheelchairs all day. I have one AI left to try....
BTW Nancy, I am originally from WI too! DS just finihed his first year at MU, and he comes home today!
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Does anyone know, is it possible to get your estrogen level too low? I know from a cancer aspect no, but I mean just from a human body standpoint? We need a certain amount just to function right?
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GK, I too am concerned about the effects of too little estrogen, especially regarding an increased risk of heart disease. When I raised my concern with my MO and my PCP, their response was to consider statin therapy. Really?!? Another medication?!? So frustrating and disappointing.
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Hershey-they recommended a statin because antihormonals can increase cholesterol levels. Increased cholesterol levels can lead to plaques which can lead to CHD. So if you wish to keep your risk of BC coming back by taking an antihormonal then you may have to treat the increased cholesterol SE (if you have elevated cholesterol) with a statin. Not everyone’s cholesterol increases. Even if your cholesterol does increase your HDL to LDL ratio may be high enough to counteract the overall risk of CHD meaning no statin recommended (that’s where I fall , so no statin recommended). Oink the end its about weighing risks and benefits. And the studies have shown the benefit of anti-hormonal therapy outweighs the risk of CHD from low/no estrogen the ant-hormonal causes.
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2FUN, I have had similar results after going off of the AIs when changing to a different one. And it's amazing how ALL the SEs go away. It did take longer when I went off Arimidex. But it was nearly immediate after going off Aromasin. I have a new curious SE on Femara... I have itchy, burning, outer ears, with flaking that looks like dandruff. That started just a few days ago. However, I'm having less hair loss on it than I did with Aromasin. Wish we could find just one GOOD one.
The CBD oil did NOTHING for me last night. Giving it more time.
I graduated from Marquette 45 years ago. I couldn't afford to go today. Enjoy the summer with your son.
Gkbuser it's my understanding that the AIs are supposed to get rid of all the estrogen. I'm pretty sure this is why we have all these side effects. The AIs are doing their job.
HersheyKiss I can't even imagine adding statins to the mix. They cause muscle pain! My MO says that they've found that AIs don't cause elevated cholesterol in the latest studies.
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Nancy, I have heard that it may be necessary to take the CBD for a few weeks before you notice any change in symptoms. A friend of mine is a LMT and she just started trying CBD ointment with some of her clients, and people are having such good results that she cannot keep it in stock!
MU is quite pricey, but DS is there b/c they were very generous in their scholarship offer for him. He worked so hard, and is such a quality human....I think that even more of him after hearing the stories of some of his fellow students!
Hang in there Nancy, I am figuring I will be back on here after I start my AIs again in a few weeks.
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Interesting about statins + antihormonals. I wonder if Oncs are also recommending CoQ10 supplements along with the statins to help with the potential side effects. Statins can lower CoQ10 levels in the body, which can be a issue becuase we need CoQ10 to make energy for our cells (including our heart and our muscle cells).
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