FEMARA
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Hello All,
We understand that this is a very sensitive issue, and we don't want hurt feelings here. We are all in this together - each person struggling to make the best and most informed decision for her/his life. There is not a blanket right or wrong answer. The decision is extremely individual! We hope we this can be a safe place to share your individual experiences, stick together and support one another, judgement free.
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I discussed hormone testing with several docs. They all said that it is difficult, because hormone levels fluctuate throughout the day. You can get a general idea, but to track changes in hormones over time is very inexact because of the fluctuations.
As far as fear ruling decisions, I tend to agree with Honey Beaw. Having cancer is scary. The disease is scary, and the treatments are scary as well. Each treatment decision has pros and cons, but none is without the cons. So whatever we do, it is a balancing act and it is difficult. I think it is very easy to be overwhelmed by fear. For sure it happened to me at times. I imagine it happens to many of us. Still, in the end, it is important, I think, to strive to make decisions on the evidence and not out of fear. In this aspect (as well as others), my surgeon was very good about taking my concerns seriously and talking through the options. He didn't ignore my fears, but helped me work through them.
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honeybeaw....it's just semantics. Using a word like unacceptable when discussing others choices is judgmental. We are all trying to avoid that. We want to support each other. Good luck to all.
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hapB, yes, of course the stats, factors etc. differ greatly from one individual to another
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HapB if only the doctors knew that.
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Hi Everyone,
I was on Tamoxifen for over two years but had my ovaries surgically removed in March 2015 so after a year of bucking the change I was put on Arimidex. After a three months I got extreme hip pain that I got where I could not get out of the tub so my MO put me on Femara. On Femara(was on 6 months) my BP/ and Cholesterol went up along with my bones decreased some from my DEXA scan I had two years prior,but I am thinking Menopause may be responsible for some of that. I was put back on Tamoxifen as my MO told me quality of live was important that that 80 percent of younger women went of AI's. I told her I was not comfortable being on nothing so was put back on Tamoxifen, which I have minimal side effects.
My new MO says that Femara is better for post-menopausal women than Tamoxifen so wants to start me back on it in a few months and since I am on year 4 he wants me on it for the next 6 years. He says we can treat the side effects.
Has anyone else had problems with BP and Cholesterol going up and bones thinning on Femara? I am already receiving Zometa infusions because of a favorable trial that says it helps keep cancer from going to the bones. Even on Zometa my bones did thin but not to the point of Osteoporosis or Osteopenia, but me being put into surgical menopause could be the blame for that.
Can Cholesterol be treated while on Femara? My prior MO told me that Femara could cause it to go up and that meds may not work. She said the same about the BP. It is so frustrating to have two doctors with such varying ideas and opinions. UGHHHH!!
Thank you
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From Web MD
Infrequent side effects of letrozole:
- Broken BoneSevere
- Decreased Calcification Or Density Of BoneSevere
- Heart AttackSevere
- High Blood PressureSevere
- OsteoporosisSevere
- The FluSevere
- Trouble BreathingSevere
- ArthritisLess Severe
- BackacheLess Severe
- Bleeding Not Related To Menstrual PeriodLess Severe
- Bone PainLess Severe
- Breast TendernessLess Severe
- Chest PainLess Severe
- Chronic Trouble SleepingLess Severe
- ConstipationLess Severe
- CoughLess Severe
- DepressionLess Severe
- DiarrheaLess Severe
- DrowsinessLess Severe
- Feeling AnxiousLess Severe
- Fluid Retention In The Legs, Feet, Arms Or HandsLess Severe
- Hair LossLess Severe
- ItchingLess Severe
- Low EnergyLess Severe
- Muscle Or Bone PainLess Severe
- Muscle PainLess Severe
- Pain In Arms Or LegsLess Severe
- RashLess Severe
- Stomach CrampsLess Severe
- Throwing UpLess Severe
- Vulvovaginal DrynessLess Severe
- Weight LossLess Severe
Rare side effects of letrozole:
- Abnormal Liver Function TestsSevere
- Decreased White Blood CellsSevere
- Erythema MultiformeSevere
- Giant HivesSevere
- HepatitisSevere
- Hypersensitivity Drug ReactionSevere
- Life Threatening Allergic ReactionSevere
- Obstruction Of A Blood Vessel By A Blood ClotSevere
- Ovarian CystSevere
- Overgrowth Of The Uterine LiningSevere
- Stevens-Johnson SyndromeSevere
- StrokeSevere
- Toxic Epidermal NecrolysisSevere
- Abnormal Sensations Of The SkinLess Severe
- Blurred VisionLess Severe
- Carpal Tunnel SyndromeLess Severe
- CataractsLess Severe
- Discharge From The VaginaLess Severe
- Dry MouthLess Severe
- Dry SkinLess Severe
- Heart Throbbing Or PoundingLess Severe
- HivesLess Severe
- Loss Of AppetiteLess Severe
- Loss Of MemoryLess Severe
- NervousLess Severe
- Taste ProblemsLess Severe
- Trigger FingerLess Severe
- Urinary Tract InfectionLess Severe
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Marijen -- got a link for that list? Flu? Seriously? I am calling BS on that. Influenza is caused by influenza virus/es, not by properly handled medicine.
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Here you go Icietla - https://www.webmd.com/drugs/2/drug-4297/letrozole-...
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That is boozarre! Hahahahahhahahhahhahahhahhahahahhaahahhahhahahahahhahahhahhahhahhahahahhahhahahahahahhhahha
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Thank you for the howler. Hhahahahhahahahhahahahahahahahahhahahahhahahahahhahahahhahaahahahahahhahhhahhhhahahaaahahhaha
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The only thing I can think of is the flu is listed because someone reported that it caused the flu. Icietla you can always call the FDA and ask, or WebMD. Maybe it's due to lowered immune system, there is a study I posted somewhere about femara and the immune system.
HapB I told my MO I can no longer take the Letrozole, the final straw was the eye problems. So what did she do? She offered me Tamoxifen and Arimidex. I said you have anything else? : ) and she said no. You would think then that because I can't take anything that lowers my estrogen anymore than it is, that offering two more drugs that do the same thing just doesn't make sense and I think that it would be fair to follow me a little more closely since I can't take it, such as tumor markers. I never got a Ki67, oncotype score, mammoprint, etc.I have no idea what my recurrence percent is - their 'machine' is broken for the last year??? All I'm going to get is a bilateral mammo in six months. Unless I have symptoms. And I had an occult primary tumor. Sigh. At least my heart doctor understood today, he said it's still a mental heaviness and worry even when I am NED. That was sweet.
PS my BP was fine on Letrozole. Glucose a little up. Cholesterol fine. Bone density bad. Pain off the chart but only after two years.
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HapB, I am sorry to learn of your having those problems. I hope you will feel much better. Do your Doctors think the Femara is the cause of your recent troubles?
I was laughing at that WebMD claim that Letrozole causes influenza. Influenza Virus would have to be listed as an active ingredient.
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Yes, melatonin, progesterone, DIM, berberine, calcium D glucarate,come to mind. Berberine acts like metformin, Dtad knows better than I Have you been to the Alternative treatment topics?
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HapB at medical news today there are all kinds of treatments in the works. I hope they come up with something better soon. You had a lumpectomy right? I don’t see it listed. Statins are supposed to be good too but again there are side effects. And now they are saying Soy ‘may’ help. My one node had only 3mm of cancer. BS said that meant thousands of cancer cells. Just FYI
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HapB. Have you tried an anti-anxiety drug along with a BP med to get your BP down? Mine went up on Femara and I was put on BP meds, kept creeping up, and then I was put back on Tamoxifen and it spiked and I ended in the ER. My MO put me on Effexor and it calmed me and my BP is doing ok now with just a low dose BP med. Effexor also helps with Hot flashes. I am on the lowest dose and so far so good
Marijean. Holy moly moly what a list of side effects. I see where carpel tunnel is listed. While on Armidex and Femara my ring finger went numb. I saw my MO, GP, PT, Chiropractor where I had acupuncture, ultrasound therapy, muscle relaxers, exercises, ice therapy,and then moved on to neck and spine MRI and EMG, then I saw a hand surgeon, more PT, steroid shot in the wrist and an unsuccessful surgery in which I got a bad infection. New surgeon for a 2nd opinion repeat of EMG(those really are nasty) and nothing helped until a few months after I was put back on Tamoxifen and it vanished. Ring finger came back to life. My MO insisted that Femara could not cause that. Hmmmmmm
Marijean you said a new study says Statins would help? Help keep cancer away or just control the side effect of high cholesterol?
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Hi everyone...IMO flu listed as a SE is due to compromised immune system.
HapB...I bet you dollars to doughnuts that if you die from a serious SE of an anti hormone such as a heart attack, pulmonary embolism, etc. the cause of death is NOT the drug.
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My issue with docs denying symptoms is it immediately shuts down the conversation. Wouldn't it be more beneficial to have an open discussion about it and maybe come up with some solutions? I understand it is not all docs but IMO its too many of them!
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hi all seems to me that this thread has become a bit dry and run its course ..
For those who have managed to stay on letrozole ..femara we have to take the good with the bad and certainly dont do the blame game as it will do your head in
Cheers b
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Research News
Statins could be new treatment option in women with oestrogen receptor positive breast cancer BMJ 2016; 353 doi: https://doi.org/10.1136/bmj.i3108 (Published 02 June 2016)Cite this as: BMJ 2016;353:i3108- Zosia Kmietowicz
- Author affiliations
Researchers have called for clinical trials into the effects of statins in women with recurrent breast cancer, after finding that these cancers can make a molecule from cholesterol that mimics oestrogen.
As many as 40 000 women in the United Kingdom have oestrogen receptor (ER) positive breast cancer diagnosed each year, and many are treated after surgery with tamoxifen or aromatase inhibitors to block the effects of oestrogen and to reduce the risk of recurrent disease. But, even after endocrine treatment, around 12 000 women with ER positive breast cancer have a recurrence.
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Just because of their having cancer, cancer patients are at increased risk for abnormal blood clotting. Some cancers are discovered because of abnormal blood clotting being known as a possible sign of cancer.
https://www.stoptheclot.org/faq_blood_clots_cancer.htm
http://blog.dana-farber.org/insight/2014/04/does-cancer-cause-blood-clots/
https://www.ncbi.nlm.nih.gov/pubmed/12407439
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(97)10018-6/fulltext
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Not everyone will have all the side effects listed, some will have issues and some will have none. As a personal choice I felt I had to give it a try and see how it worked for me . I have had no major side effects that I can say are for sure Letrozole and I came real close to not taking it out of fear.
I think as with any medications there are going to be people that do well and ones that can not take it . Everyone has to see what works for them
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Icietla - I always looked at the The Flu in the list as being either 1) the lowered immune system thus more susceptible to getting the flu or any other illness, or 2) flu-like symptoms. When I too Faslodex injections, I would sometimes have flu-like symptoms that were side effects of the injections. I compared the hit to H1N1 for a day or a few hours then gone. It is very real.
Anyway..... HapB - I know the feeling. I feel so ill I cannot stand myself. And I am not on a hormone targeted drug right now. When I was on Femara, it was the worst for me.
Marijen - thanks for the refresher link. Sobering, isn't it. Hormone targeted drugs kept me off chemo for years. But sometimes I wonder if I needed to just go through the chemo right off and be done with all the rest until recurrence. Hindsight is everything.
Lately, I have been considering cancer research and that we are the research as we sit here. But they are not listening to the ones who have anything really negative to report.
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And they just had this story on NBC Nightly News....
Breast Cancer May Return Even 20 Years Later, Study Finds - NBC News
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How did you find those women HapB. Too bad there isn't a Femara Gel. I would try that.
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Oh, I thought maybe you did some kind of search. Thanks.
Here are the CDC coding rules and causes of death:
https://www.cdc.gov/nchs/ppt/nchs2012/li-14_minino...
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hello. I don't know why I took so long to log in on this thread. I am miserable on femara. I am heavy and MO says femara works best for obese women. I'm having all sorts of nasty SE'S but worst is recurrent UTIS I'm having them every 10 to 14days. I see my urologist in a few days, and MO at end of month. I wasn't so "brave" to get thru 3 cancers in the last year to feel like cap now. (Sorry to vent, just curious if anyone has UTI background )
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2fun
I was also having UTIs all the time, one of the NP told me increase my water double and to try PRELIEF, its a OTC acid absorber that takes the acid out of foods before they hit your urinary track , You don't have to take it everyday just when you eat foods high in acid. It has worked really well for me, I have not had a UTI in about 6 mts now
Good luck, hope It gets better for you .
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hi,
Started taking femera Nov. '16. No discernible side effects at first. However, in March, blood test resulted hyper calcemia 10.1, blood test in sept. 10.8, discontinued caltrate D 1200. Blood test in Nov,. calcium back to normal.
During the month of December, extreme sciatica attack resulting in epidural, physical therapy 6wks, in Feb. another epidural for sciatica. Granted, was diagnosed with sciatica in 2010, no epidural, was functioning pretty well. I've also had a cervical disc problem since 1983, no surgery, periodical cervical epidurals, prior to taking femera, last epidural cervical epidural was 15 years ago, a flare up has occurred, cervical epidural in June. Shoulder A/C joint has flared, possible surgery. I am 71 years old, and have some arthritis, but had not been debilitating. Since taking femera, I have experienced an increase in joint pain and stiffness as well.
Was diagnosed with stage 2 breast cancer, 2cm mass, left side, no lymph involvement, decided to have mastectomy to decrease worry of reoccurrence. mamma print recurrence assay rated risk of recurrence low.
I wonder if I should even participate in this treatment exposing myself to these side effects.
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