FEMARA
Comments
-
Not unless they come up with something different.
0 -
I think you should check with the ladies like you. You might need it more. I havn't followed that group. And you might be younger? I see you are fairly new at dx so there's a lot to learn.
0 -
Sorry HapB, so what did you do the first two times? Were you on AI and it recurred? You must know how bad Tamoxifen is? Why do you say if the AI doesn't work? I'm willing to listen or you can PM me.
0 -
HapB - of course it doesn't hurt to try. If you're going to try then do the Letrozole, it's the most effective.
So do you take all the good stuff? Like VitD3, calcium, magnesium, K2, melatonin, DIM? What about surgery? Did you have it yet? It's hard to follow everyone's situation.
0 -
Have you heard the one that retirement is created to free our time for doctor's appointments? So what do you want to do. You had radiation, did that go ok? What does your doctor want you to do?
0 -
I hesitate to ask this question because I don't want to scare anyone but has anybody had trouble with their nails? I think I'm going to lose my thumb nail. The skin all around the nail is very tender especially at the end of my thumb. The nail has also turned yellow and is thicker. Don't know if it's the letrozole or the Ibrance that I've been on for 1 1/2 years or both.
0 -
I don't know about Ibrance. I have vertical lines on all my nails now. I'm sure it's from estrogen depletion
0 -
The only way I can keep my fingernails is to keep polish on them. It adds a layer of strength to my nails, which are so thin and weak. Weekly manicures would stress my nails so I get SNS manicures every 3 weeks and have to remind the manicurist to be gentle with those drills.
I'm taking Femara for treatment. Not as a preventive. I really don't know how those of you taking it as a preventive stand it! Even though my life depends on it, the side effects are so bad, I can only take it every other day. And even then, I have to take "vacations" of a couple of weeks every now and then. My cancer has been stable for over a year. So, everyone is different, but no one should feel guilty about not taking it. If your cancer returns, you can take an AI then. I'm happy I had 3 years after my initial diagnosis with no Tamoxifen or AI.
0 -
Tarheel Michelle, I didn't know who you were until tonight although I've noticed your name. I just watched your video over at MBC awareness. You are amazing. Thank you for coming here and sharing about Femara. You've made a difference. I was looking at your first dx and you didn't take an AI then? Anyways when I saw your dx I got very worried. Although I am glad that I have stopped the letrozole due to the SEs. Would love to hear more of your story. Thanks.
0 -
Bossomblues...So sorry you are suffering. Just my opinion but I definitely do not think 3 weeks is long enough to see if it was the Femera. I personally would give it a lot longer. Unfortunately some SEs of aromatase inhibitors can be permanent, especially joint issues. Hope that is not the case for you. Good luck and keep us posted.
0 -
Good morning dtad and BB, thanks for your insights. There was a post at Christian ladies about a doctor who basically said messing with hormones is a bad idea and it would take a year for everything to right itself. And then there is the unknown tissue damage we can't see. Damage to heart, lungs, brain, bones, immune system. Sometimes I wonder if the docs have ever even thought about his stuff. So if it's a good doctor it might be a better idea to just enlighten them.
0 -
HapB I think you are right about that. I don't think the doctors want to acknowledge the worst side effects as the AI is sometimes all they have to offer. And if the side affect IS listed it can be dumbdowned as in the case of blurry eyes - means a lot more than we suspect. And it could be the doctors don't warn of side effects for several reasons, one being it is suggestive, and two we would be more likely to say NO. Then what. The Letrozole generic is over $500 a month retail. Some body is getting that money, I'm not sure how it works.
0 -
HapB -- you are correct, there is a lot of anecdotal evidence of the side-effects, but unless there is a report to the FDA, it may not get noticed. That means for you ladies who are suffering from severe side effects, it may be good to report them. Here is a link to their form Link for reporting side-effects to FDA The only way for researchers to identify the frequency is through a retrospective analysis of patient records. That means they read back and find the common threads. This often only happens at major research institutions. Your doctor also can report side-effects... but if you are labeled "nervous" or something else, you may not be taken seriously.
0 -
HapB- HI- I also take Zometa infusions. Did they have you get clearance from your dentist? I also advice if you can to take Benedryl before and after treatment and be well hydrated and ask them to run it for a half hour. The first infusion affects some people( not everyone) and the Benedryl and water does help.
I also have ridges on my nails now and I never had chemo. I am thinking it is from estrogen depletion. I remember my grandmother having these ridges, maybe it also hereditary?
I started on Tamoxifen( pre-menopausal) was put into surgical menopause- bucked changing to an AI for a year- finally started on Armidex was on it for 3 months and I ached so badly it ruined my dream trip to Alaska- GRRR- Was taken off a month and started on Letrozole( Femara) my joint pain was so much better but my BP went crazy and my Cholesterol went up. My bones also thinned so 10 months later back on Tamoxifen again. Went for my appointment Sept 1 with my Oncologist my BP was up and I was suffering from anxiety and insomnia. I was put on Effexor and was taken off Tamoxifen until Dec. I am getting a 2nd opinion this Thur and hoping I am put back on something. I have been on these meds for 4 years combined.
They are saying 10 years now?
0 -
Your grandma was how old? Maybe just another symptom of old age and less estrogen, like wrinkles?
0 -
HapB you can go to interactions at www.drugs.com and put in all your meds and save (if you sign in) and voila - it will show you any alerts, high, med, low. automatically. And I try to not encourage the docs to give me more meds. Death from doctor/hospital error is right up there with the big 7, i.e. a lot of people die from treatments and/or screw ups.
0 -
So sorry HapB. I think it's not only the mixture but as the body gets older it really can't take everything being ingested. We have to be more sensitive to when we feel overload.
0 -
I had a Zometa infusion last week and did some research beforehand about how to mitigate side effects. Here's what I learned: zometa causes a proinflammatory reaction that can feel like you have the flu - achey, fever, headache, nausea, etc. Studies show that taking Tylenol (acetaminophen) before the infusion and for a couple days after will reduce the severity of any side effects. Also, be sure to drink a LOT of water before and after the infusion to flush the excess from your system. It is excreted through your kidneys and can cause damage if your kidneys are impaired, so have your BUN and creatinine levels checked beforehand. Don't take ibuprofen as this can compound any kidney problems. I was expecting the worst, but followed the advice above and had zero side effects. I will be getting another infusion in 6 months and will be a lot less nervous about it next time around!
Edited to remove the word "anti inflammatory"
0 -
Tylenol is not an anti-inflammatory and it is not a nsaid. This mistake is made often. Tylenol is for pain.
Tylenol (acetaminophen) is not anti-inflammatory
Acetaminophen is an analgesic and an antipyretic drug. It's not an NSAID. In other words, it's not an anti-inflammatory drug. It does not help reduce swelling or inflammation. Instead, acetaminophen works by blocking your brain from releasing substances that cause the feeling of pain. It relieves minor aches and pains
0 -
I was on Ibrance / Femara and had a rough time. Now dealing with an enlarged heart and pulmonary hypertension that could be drug induced or could be from lupus, which I have. EDITED :::: Cardiologist said the scare was due to a false positive - I do not have either. What a he L L of a week, and now I am going to live through that since heart is good. Pulmonologist today, they rushed me in instead of to an ER, very nice to be taken care of... Breathlessness seems to be a combination of so much including Xeloda, due to the week it started being it's worst. We are tweaking everything now, the tx have gotten me thus far and the onc is hopeful and pretty sure I am stable and perhaps very clear of cancer lump node masses or even singular. And yes, Femara is part of my story, it did help.
Perviously posted this - and that is why the links leading to this answer...... I wonder if anyone has heard of personal experiences where either of these caused enlarged heart / cardiomyopathy - cardiomegaly ? Or Faslodex or Arimidex or Xeloda, if you know.
I do know no matter what Femara is not a drug I would revisit. I did better on Arimidex and it was hard too.
For the hair / nails. Biotin supplements. Inexpensive. Doubling up on the recommendations has not hurt me at all.
0 -
HapB We are all unique remember.
0 -
Bluebird I just recently posted some studies on AI affecting the heart and the lungs and the immune system. I'll see if I can find them. Maybe at AI and Walking Away.
0 -
I just got a look at my toenails, they too have vertical lines.
0 -
Marijen - I will watch for your link or info here then. Thank you.
Long story short - our family has the gene characteristic MTHFR C6677T. Common enough and sometimes nothing happens to you. You need no folic acid, use methylfolate that absorbs and B12. Easy tweak if you know what and how and how much. But we also are swamped with autoimmune issues - hypothyroid esp. I also have lupus, scleroderma perhaps, hypermobility of joints with toughest bring the left hip where it pops out daily, ouch. And now the pulmonary hypertension which is supposedly causing the enlarged heart, rheumatologist thinks. But tests are needed to be sure and at what degree.
I am looking at what if this was caused by one of the chemo drugs or the hormone targeted drugs. Just in case. I need to know before I continue on anything at all. Have done a lot of research and more each day.
So thanks again.
0 -
Oh I had this already -
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5328027/ autoimmune
https://www.sciencedaily.com/releases/2010/12/101209101350.htm heart
http://www.breastcancer.org/research-news/20101210 heart
http://www.buzzle.com/articles/low-estrogen-side-effects.html heart
Estrogen Deficiency Symptoms
Scarcity of estrogen leads to hormone imbalance and exhibits several symptoms.
Women may suffer from irritability and stomach problems like bloating, gas, discomfort, etc.
Insufficient supply of estrogen from the glands can cause osteoarthritis, leading to joint pain, swelling and stiffness of joints.
Women with decreased estrogen production can suffer from short-term memory failure or poor memory.
Low levels of estrogen can result in infertility, lack of menstruation, irregular periods, lack of ovulation, etc.
Decreased estrogen levels mainly result in bone loss. Women are likely to develop osteoporosis due to scarcity of estrogen.
Decreased sex drive, painful intercourse, vaginal dryness, itching sensation in the vagina are the main side effects of reduced flow of estrogen.
Low estrogen side effects in men include thin bones, as estrogen is responsible for good bone mineral density and strong bones.
Scarcity of estrogen can cause low blood pressure, excessive fatigue, thinning of tissues, lethargy on light exertion, depression, mood changes, thin hair, headaches, lower back pain, insomnia, etc.
Menopause symptoms like dry skin, hot flashes, night sweats, vaginal dryness, bladder infections, fatigue are experienced by women who have estrogen deficiency. Young women with low estrogen are likely to experience an early menopause.
Depleted estrogen levels can result in increased LDL (bad cholesterol) and decreased HDL (good cholesterol) which may in turn lead to obesity and heart diseases.
Estrogen deficiency can lead to rapid pulse rate, increased risk of heart attack, stroke and bone fractures. Women with lower than normal levels of estrogen may suffer from panic attacks and low self esteem.
Read more at Buzzle: http://www.buzzle.com/articles/low-estrogen-side-effects.htmlThere are probably more and better articles but these are the ones I've already found.
FYI Tamoxifen is for premenopausal women and IS NOT an Aromatase Inhibitor but may cause some of the same problems.
0 -
0
-
This one might require a sign-in to Medscape - email plus password, that's all. It's a great medical website so worth the trouble.
Extended AI Use and CV events...
0 -
Ndgrrl, you had thinning bones even though you're taking Zometa? I've been on Zometa for almost two years now. Before I began, the MO ordered a baseline dexa scan which was normal. After being on it for a year, I asked about another dexa scan, but the MO said I should be fine because that's why I'm getting Zometa. She was concerned if the insurance would pay, but relented and ordered one. Again it was normal, and the insurance paid.
HapB, the dentist clearance for Zometa is because of the potential for osteonecrosis of the jaw (ONJ). There is more potential for the ONJ to occur if necessary dental work is performed after one starts Zometa, so it's essential to have any major dental work, e.g. root canals, crowns, tooth extractions, etc., done beforehand. I also hydrate well before, during and after an infusion to help my kidneys. My center also does an automatic fluid flush afterwards, and I insist on the half-hour infusion. To date, I haven't had any problems with SEs.
0 -
I am in the coverage gap for Medicare (donut hole). I have been unable to take generics due to an immediate reaction that is both neurological and respirator. The brand name is fine. But insurance doesn't offer any recourse for someone who is unable to take generics. My payment for Femara for the three months' supply is $720! Does anyone else have this problem? I hate to say it but right now that is an entire month's income for me!!
0 -
In the donut hole at $3700, out at $4950. In the donut hole you pay for 40% of brand drugs and 51% for generic. The insurance pays 10% and the rest is discounted. To stay out of the donal hole you have to watch the total costs year to date and cut back on any real expensive drugs if possible.
0
