FEMARA
Comments
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Yes, sorry windingshores, did not mean to offer any advice contradicting your Onc. The only reason we suspected the letrozole was because I went off the Ibrance for about 10 days before the letrozole and no change. Then when I quite the Letrozole, about 4 weeks now, the enzymes started coming down and the heart rate and breathing got better. My liver doctor said something about the half life of Lerozole being about 27 days to totally get out of my system. Another words no one really knows which one was messing with my system (unfortunately) as now I have to switch entirely even though it seemed to be working on the cancer......good luck april with the new med. May it work for many years!
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I haven''t talked to my oncologist about this yet, and will see her in a couple of weeks. It was a cardiology nurse practitioner who made the comment about staying on Femara and treating the AFib. Given the fact that some of your symptoms are actually listed as side effects of Ibrance, I would suspect that rather than letrozole, but I don't know the half life of Ibrance. my AFib is episodic- two episodes in three months, but they do tend to pick up. I don't see any research or sites or studies that mention AFib with Femara, though the hormonals do have "cardiovascular effects" mainly through changes in lipids, but I think that is a slower process, not sure.
It seems as if it is not possible to tell which med caused the side effects when you withdraw, because of residual meds and effects. But going onto one at a time would tell you. I guess you are going on Faslodex and Ibrance now, with Faslodex in place of letrozole. If the problem recurs I guess you will have to go off the meds and then try one at a time, with the most important one first-?
If it turns out that my oncologist knows very well that Femara has this side effect, I will decide what to do, stay on it, or go on Tamoxiifen, or some other approach. Right now the Femara makes me feel safer.
Good luck with your treatment and thanks for the help. I really appreciate it.
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April, I hope it works as well for you as it did for me. I have been on Femara about 2 years and it was much kinder than Aromasin. I found I have to take Femara in the morning and my statin at night or I get joint/muscle pain. But that vastly decreased once I made that change. Let us know how it goes.
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Windingshores, won't your doctor try you on some other AI or tamoxifen and see if the a-fib goes away? Or have you tried those? This does seem like a bad side effect to have to live with.
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I doubt it is a side effect of Femara. That is why I posted in the first place. If anyone else has developed AFib on any AI I would like to hear about it. There is really no reason to think it is from Femara: no research that I can find. I am sure my doctor would do tamoxifen or some other AI if I asked, but that is not what I want right now. This is just preliminary research of a sort.
I tried anastrozole generic and had trouble with fillers, the letrozole generic and had trouble with fillers, and have been on brand name Femara.
I am willing to put up with quite a lot to stay on it, so even if someone told me that Femara DOES cause AFib I would have to really think about what to do. But again, I doubt it is the culprit.
Reclast, that is another story, and I am avoiding that. But have few other options because I react to so many meds. Reclast HAS been tied to AFib.
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Good luck getting it figured out, windingshores.
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How do you determine the SE was fillers rather than just the listed SE that can come with AIs? I have a lot of SEs but trying to figure out what to say to MO in terms of the generic I'm on
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For what it's worth----I have aortic stenosis and this year have to get a new aortic valve. I've been stress tested, numerous echocardiograms, ekgs, etc. Never has my femara been brought up as a problem. My cardiologist and oncologist do talk to each other. I have to watch myself for chest pain, irregular heartbeat, etc.
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Went to my dentist a couple of weeks ago. He confirmed that the cancer treatments/chemo will cause tooth problems, and could lead to tooth loss. Yikes! My teeth haven't changed color, but I've had bacterial issues and will have that procedure where they scrape under the gum line and use antibiotics to clear it up. Start in a few weeks (waiting for new year's new dental insurance). Also had my first tooth abscess. I've always been diligent about my tooth care, but am even more so now!
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Well, though Femara is on OptumRx’s formulary, United Healthcare (even on my platinum Choice Plus PPO) will cover only the generic. OptumRx also says it is impossible to specify a particular generic mfr. (i.e. Teva), as they use whoever sells to them most cheaply in bulk at any given time (and all the generic other meds I’ve gotten through them have been Mylan, Sun or Roxane). Same story at Humana Enhanced Medicare Part D. Cheapest for generic is the outpatient pharm. at Kellogg, but they stock only the Roxane-made letrozole. My local indie ordered 30 Teva for me, at a buck a pill, and it’ll be ready Monday (and still covered by United as I don’t hit Medicare till Jan. 1). My indie charges $700 per mo. for Femara, so Costco’s $2100 for 90 days, while outrageous, is not unusual. Meanwhile, DH said we could go out-of-pocket up to $400/mo. for brand name Femara, as some of my other branded meds have gone or are soon going generic. Found a reputable online Canadian pharmacy (his patients use it, faxing it his scrips) that charges $550 for 90 days of UK-sourced (Novartis UK) Femaraand $670 for Canadian-sourced. So he wrote a scrip and I’m faxing it in. Will try the Femara first, and stay on it if tolerable. Keeping the Teva on hand just in case.
I’ve had thinning hair the past couple of years. When straight via keratin therapy, it looks finer & thinner; when just washed, blow-dried and ironed it looks a bit fuller. Will probably get custom extensions via my stylist; if a wig is necessary, Chrysalis (a local wig salon only for cancer patients) says that they’ll work with me even if it’s because of AI and not chemo--will need a “cranial prosthesis” Rx from my MO. My nails have been weak and splitting for years, so that’s why I get gel manis. Will soon need them more than ever. The SE of letrozole that most bothers me is possible dry cough, similar to the kind that forced me off the cheaper ACE inhibitors and on to ARBs for my hypertension. For a singer, cough is a dealbreaker. My PCP is not worried about elevated LDL because my Framingham score is otherwise low, arteries clear, and I’ve never had a cardiovascular event. But he’s at odds w/my MO re bone drugs for my osteopenia--he considers mine mild and manageable by exercise and calcium/mag/D3, and says it could turn my GERD into Barrett’s esophagitis that is precancerous (and esoph. cancer is an inevitable, fast and ugly way to go); my MO wants to talk bisphosphonates, but my DDS is also dead set against them as I have some bone loss from gum disease. Dr. Favus at U of C (aka the Bone Whisperer) says “doing nothing is not an option.” Oy. Might end up on Prolia injections.
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ChiSandy I do know women who are doing exercise and nutrition for osteopenia. You could look into calcitonin, or strontium (used in Europe availlable as supplements in a different form here). Prolia is often saved for when things are more severe, as is Forteo. IV biphosphanates avoid teh esophageal issues but not the dental ones. I have severe osteoporosis and am really between a rock and a hard place due to reactions to some of these meds.
I have reactions which are immediate to some ingredients. Side effects are over a longer period of time, or, at least, not immediate. That is a distinction I make anyway. I can tell it's fillers because I don't have the same reaction to the brand name in the first 10 minutes.
I am nervous because I go on Medicare in May.
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Suersis, are you saying that you began taking Femara long after you had atrial fibrillation so there is no connection?
I have also had IV diltiazem after they got my blood pressure up with IV fluids. I have had symptoms with both my episodes, with heart rate 180, bp under 70, shortness of breath and chest pain. On a day to day basis I cannot take beta blockers or diltiazem due to low blood pressure (they gave me digozin to take as needed).
But my episodes started after the date I began Femara. I don't think there is a connection, but I mainly wanted to know if anyone else had AFib they knew or suspected was caused by an AI.
It sounds like the AFib suffered by you and your sister is not caused by Femara.
Best wished for you in your treatment and thank you for answering.
It gets so we have to choose the least bad course of action rather than the best, and go for the best chance we have of time and relative well-being. I choose Femara for cancer as long as cardiac symptoms are not dangerous. If they are "merely" scary, I think I would still stick with Femara unless they are actuallylife-threatening.
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I started femara 5 years ago & felt virtually no side effects until I switched to the generic letrozole after 1 year. The 4 years I have used letrozole I have found that my side effects vary, depending on the manufacturer. Sometimes I have none, sometimes I feel kind of lightheaded. Taking the pill at night helps. If you are able to take the Femara, not the generic, do. I have had almost no bone loss, I walk 45 min/day, gained about 8 lbs, have had very poor hair regrowth since chemo ( but I took taxatere that can cause perm. hair loss and I started femara just as my hair was starting to grow back.) Ive had no joint pain. And it did raise my cholestrol. All in all I think I have gotten off easy, it varies for everyone.
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I was lightheaded when I started Letrozole from Roxane Manufacturer - so I started taking it in the evening. After a few months that dizzy feeling that lasted maybe two hours is gone, I think. I like to take it at night a few hours after I haven't eaten in the hopes that it will have an extra punch and not be slowed down by a full stomach.
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I did read that it is more potent on an empty stomach. I take it in the morning first thing and delay breakfast long enough for it to dissolvve, anyway- if I can.
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I had understood that the absorption was better while taken with food. Time to ask Dr. Google!
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So, Some medications require food in the stomach and gut for the body to absorb them into the bloodstream properly. Letrozole doesn't seem to be one of those since my label says with or without food so it must not matter. I did find this: @ http://howmed.net/pharmacology/factors-affecting-absorption-of-drugs/
7. Dosage Forms
Dosage forms affect the rate and extent of absorption. A drug can be given in the form of tablets, capsules or transdermal packets. Injections may be aqueous or oily. This changes the rate of absorption. Examples include nitroglycerin which when given by sublingual route, disintegrates rapidly but stays for a shorter duration. When it is given orally, it disintegrates slowly and stays for longer duration. When given by transdermal route, the drug can cover an even longer duration.
a. Disintegration:
Disintegration is the breaking up of the dosage form into smaller particles. When rapid is the disintegration, rapid will be the absorption.
b. Dissolution:
After disintegration, the drug dissolves in the gastric juices, which is called dissolution. It is only then that the drug can be absorbed.
When these two processes occur rapidly, the rate of absorption increases.
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Hi, just wanted to weigh in that I have been on letrozole generic for almost 3 years after 2 years of tamoxifen. The letrozole is world's better for me. I have not experienced thinning hair as a side effect but hot flashes/night sweats come and go. I have had joint pain but take SAMe in the morning and try and stay active and that seems to really help. Brain fog is what it is but I'm not sure if that would have happened anyway with menopause. I ask my cancer free older sister and she seems to get it too so who knows.
I am five years out NED and will likely stay on letrozole another 3 years. My sister in law was just diagnosed with bone mets, triple negative after 16 years clear and it breaks my heart. I will do all I can to try and stay NED.
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I have been on Femara for 4 months. 2 days ago I got to my front door and stood there trying to figure out which key would open the lock. I kept looking at the different keys and finally tried one, not knowing for sure. It was the right one. We have lived here for over 25 yrs.. I am praying is not the start of the brain fog. I had it really bad with the arimidex. Aromisin was really bad for joint pain. I really want to stay on Femara. Does this sound familiar to anyone?
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Cwayman650, yes it sounds familiar! Femara/Letrozole cuts off estrogen to every cell In your body, and that includes the brain. Protein helps me with any brainfog, which I've probably had long before Letrozole.
Ellelou, thank you for your research that validates my intuition.
Hipline, I like the hot flash with Letrozole that I didn't get with menopause, it makes me think it'is still working. I get a sweat a few hours after I've taken it, usually after 9pm.
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Hipline--oh that is unhappy news for your SIL. If she is on BCO, she (or you) could go to the bone mets thread in the stage iv section. The ladies there are awesome, knowledgeable about stage iv treatments, and very supportive of each other. I recommend she join. I'm pretty sure there is a triple negative thread too. At the moment, though the bone mets thread is grieving Charlene who passed away last night so although that is our reality it's hard for new people so wait a bit maybe. I was only dx in June.
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Ellelou, thanks for the info on the bone mets thread. I have been reading and will send her when the time is right. I wish you all the best - and everyone - in 2016.
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Oh dear, who knows about endocrine resistance?
Endocrine resistance is a major clinical issue that makes advanced breast cancer more difficult to treat. Hormone therapy is generally well tolerated and an easy-to-administer option for breast cancer, with demonstrated benefits in patients whose tumours express hormone receptors (HR), particularly the HR+/HER2- subgroup. The ideal option for patients is to be on one endocrine therapy after another, as long as the disease responds or remains unchanged. "However, unavoidably, resistance develops in almost all advanced patients a median ten months after the first-line hormonal agent is administered, and a much shorter median time after the second- or third-line hormonal agents, eventually driving patients to switch to the more toxic chemotherapy," one of the study authors, Dr. Jungsil Ro, Center for Breast Cancer at the National Cancer Center, Goyang, Korea, said.
Dec.20, 2015
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Marijen, Endocrine resistance--yup--that's why a bunch of us are on Ibrance and anti-estrogen/aromatase inhibitors hoping to get a good run from it. To clarify for those of you who don't know: Ibrance is Pfizer's name for Palbociclib that the article is about. Fulvestrant (or Faslodex by AstraZeneca) is a selective estrogen receptor degrader. Fulvestrant is indicated for the treatment of hormone receptor positive metastatic breast cancer in postmenopausal women with disease progression following anti-estrogen therapy. Letrozole or Femara is a form of hormone therapy known as an aromatase inhibitor
My first tx for stage iv is Ibrance and Femara. When that fails, maybe I do Faslodex instead or in combo with something else. I have a scan in Jan to see if the mets in my spine are shrinking.
Ibrance is the very expensive drug (got a lot of press) that was approved April 2015 and there is a thread here in the stage iv.
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Ellelou, if you fail Femara will your Onc try another Ai first such as Affinitor or Aromasin? Mine said she couldn't since Letrozole elevated my liver enzymes then the other two would do the same. But I have read that Aromasin has a different chemical compound so wonder if anyone else has had a similiar experience? She is starting me on Faslodex today but wonder if I am eliminating one med too soon....
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Artist, truthfully, I have never discussed with my MO what I would take if the Ibrance/Femara combo--jury is still out on that for me--stops working--or when it finally does, since that seems to be the inevitable for most. He just acts like there are other avenues. I have heard that it is good to switch around--not knowledgeable enough here to be specific here but if one drug stops working, start a really different type, don't just take a slight variation, and then you can also circle back to drug combos that you failed before because they can react differently later. Lots of ideas out there and of course everyone is different too.
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Yes, thanks Ellelou, that is what I hope. That I can circle back around to an Ai that gave me trouble the first time. I hope your combo goes for a long time~
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Ellelou, your explanation is great, I'm going to save it for future reference. How on earth do you pay for Ibrance?
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Artist-- I love Tahoe. I grew up in Marin. I'm doing well and the future looks good too. I almost bought a lot in the Soda Springs are to build a cabin a few months back.
Marijen--fortunately I was told of the Pfizer copay program before I heard the 10k a month cost. I have health insurance so I qualify for the copay assistance program. I would pay 250.00 a month without the program. I pay 10 bucks currently. Iknow some on Medicare have had some difficulty getting it covered. I'm not sure what other avenues there are for uninsured folks.
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Elle, If you like a lot of snow Soda Springs is the place! My husband and I met and worked at Sugar Bowl 30 years ago. We were long time skiers but slowly over the years have fizzled out. Now that I have been diagnosed I feel the call of the mountain again but am a little afraid of injuring myself along with all this. Boo! I actually love San Diego and would love to bask in some sun shine in the winter and be able to walk the streets without ice!
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