FEMARA

marijen

Did you tell your doctor? Maybe you could discuss stopping for six weeks to see if there are improvements? Maybe your symptoms are age related

peacestrength

Yes, my mo knows and says it's a side affect of Femara...I'm young so it's not age related:) Iwas diagnosed with stage 3 and not an option to stop taking at this point.

SusanRachel

Discuss with your MO if application of a local estrogen to the urethral opening is an option. The opening is small, so you shouldn't have much systemic absorption and the AI will clean up any estrogen that tries to sneak in.

MargoChanning

I agree you should see a gynecologist-this sounds like urogenital atrophy which comes with age and estrogen deprivation. It can't be remedied with OTC products. Vaginal estrogen has been approved for BC patients; talk to your doctors.

ChiSandy

Marijen, your MO doesn't believe that fillers can affect different people in different ways? Does she think allergies, lactose intolerance, dye & metal sensitivities and gluten intolerance (not just celiac) are hoaxes? Fillers & binders, depending on mfr., include all these things plus talc. I have a friend so sensitive to corn that she has to take most of her meds in liquid form because of cornstarch and corn-sugar binders.

Maybe it’s time to switch MOs.

stellamaris

Peacestrength, I had significant urgency/frequency issues when I started letrozole 1.5 years ago. Also hair thinning. It has started to diminish over the last 6 months, and now I feel like it is stabilizing. My worst SE is hot pins and needles that wake me up every night. And hot flash. Actually, not so much flashes as just hot, all the time. My face flushes and I get very red cheeks.

Bliss58

Had an eye exam yesterday and dr. says I have thinning retinas in both eyes. She's referring me to a retina specialist for laser sealing to ensure they won't detach. Great. It's always something isn't it? Has anyone had this procedure? She didn't note this last year and I've now been on Letrozole for a year, so I'm guessing this may be attributable to its use.

marijen

So BJS did the doctor say what causes it? Are you myopic? Diabetic? I just did a search. Didn't know the retina is so thin to begin with. Have you looked it up for yourself? When I find a good description I'll post it.

Heidihill

No idea about thinning retinas even though I most likely have them. I did have posterior vitreous detachment with bleeding which had to be re-attached with a laser device in order to protect my retina. Is that the same as sealing? I didnt ask questions as I barely could see anything. First one eye went, switched to Tamoxifen from Femara, then the other eye, switched to Arimidex. The two operations were the most painful procedures. Unbelievable but many doctors here dont believe in anesthesia. My vision returned to normal and I have had eye exams (not with the same doctor) which indicate all is well. Good luck with your procedures, BJS.

Heidihill

If you have recently had a vitreous detachment, watch carefully for symptoms of retinal detachment, such as flashes of light, a shower of dots and a pitch-black curtain entering and moving across your vision in any direction. If you have any of these symptoms, especially if you have more than one symptom at the same time, see your eye doctor or go the nearest emergency room immediately.

From http://columbiaeye.org/eye-library/vitreous-detachment

I might have had a retinal detachment as well as I had all three symptoms at the same time. 

grandma3X

Cholesterol test results just came back. All in the normal range

1.5 years under my belt, 3.5 to go.....

marijen

It would be nice if there was a chart that showed how many recurrences or percentae of recurrence for all the years taking into account age, stage, grade, and whatever. Five years or ten years are arbitrary numbers. If you recurr in year four you won't get to year five. If you recurr in year six, then five years was a waste or just prolongation. When I started I was told two years, now it's five. Why is five a magic number? I don't think so. I think it depends on all the variables. As one person said size doesn't fit all. And what about reducing dosage or taking every other day. There was a study showing it made no difference. If you are handling the sides BB then you might as well keep going right? Are you handling the sides. Sorry I can't remember what you've said about that

AnnieMF

I am very interested in reducing my dosage. As you stated Marijen, one size does not fit all. I am 5'2" and weigh about 125 (give or take a few, depending on the day). I am taking the same dose as someone who is 5'10" and weighs more than I do. Am I being overdosed? I have horrid hand pain....24/7. Trigger thumb and ring fingers on both hands....and all-over joint pain....hands swollen to the point I can no longer wear my wedding rings. I've tried cortozone shots, physical therapy and acupuncture. Nothing has worked. I was on Letrozole for a year, and then switched to Aromosin to see if it would help....it didn't. I started having trigger thumb about 3 months after I started the Letrozole. I see my MO in early September and I want to talk to her about possibly reducing the dose. I was just extremely curious if anyone with bad SE has tried reducing the dose. Is it still effective? Also curious if weight/height might have anything to do with SE.

marijen

There is a link here on dosing regimen, go back to Aug. 1, here. Recently I read that testing estrogen levels is difficult because they fluctuate during the day. But maybe those of us that have more pain, have decreased estrogen too much with the AIs. Or our bodies didn't make as much to begin with. This is a guess. However. Now I read that the longer we are on it the sides can get worse so wouldn't that reflect less estrogen as time goes on? And/or the body is so decreased it is craving more. One doctor said it is foolish to mess with hormones.. I'll buy that. We have estrogen receptors in all parts of our bodies, including the brain Or the pain could be from demineralization of the bones. Some of us had weaker bones and joints to begin with. You can go to Topic: Aromatase Inhibitors Walking Away for more information.

marijen

You could try decreasing on your own BB, rather than going off completely. As an experiment

AnnieMF

Marijen, thanks for the link back on August 1st. Don't know how I missed that. It's a bummer that the SEs are, apparently, not reduced when reducing the dosage. I'm glad I asked here. Very discouraged that as an ER+ it sounds like we will have to be on the AI's for a long-long time. I guess hand pain is my new normal. If I have to stay on AI's I think I am going to switch back to Letrozole. The Aromosin really made me gain weight.

marijen

You're welcome. I wouldn't take one study for total truth. It may be it differs if we just try it ourselves. Can always ask the MOs

marijen

Yes when we are suffering that's when we know it's working! Nice guy. Maybe it was working too good. I bet we all don't have one size fits all estrogen levels

KBeee

My first MO treated me that way. His trip out the door was his last one for me. He's my ex-MO, best decision I've made.

Those with hand pain, consider being evaluated for carpal tunnel. I have seen it in several friends who've been on AIs

Bliss58

Thanks, marijen and HeidiHill for your input on my retinal thinning. The retinas haven't detached and that's what the eye dr. wants to avoid by "sealing" them. I'm not diabetic, but I am myopic. She said my astigmatism had gotten quite a bit worse, so maybe that has something to do with it. I asked her if it could be caused by medication, and said she didn't think so; maybe it's not the Letrozole. I'll quiz the retinal specialist more when I see him 8/31. Heidihill, I think the procedure you describe sounds like maybe it's what my doc called "sealing," at least it's done with a laser, but if it was painful for you, then I know to ask him about anesthesia!

marijen

BJS take the study link with you on the AI and vision problems.

And if I have to get the surgery I will make sure I get anesthesia too!

So just to be clear, the vitreous can detach from the retina and the retina can detach and tear. I don't know what the retina detaches from? The macula

Bliss58

Thanks, marijen, I will. In researching detached retina, I only found: When the retina detaches, it is lifted or pulled from its normal position. I also found that retina thinning is called lattice degeneration, and I do remember her saying the word lattice, but missed the degeneration part, and when I asked what she said, she told me I had thinning retinas. Here's what I found on it: "Lattice degeneration is a retina condition in which the retinal tissue is abnormally thin and the blood vessels have a "lattice-like" appearance due to fibrosis.

Lattice degeneration lesions, usually localized, appear as round/oval or linear patches in the far peripheral retina.

The typical lattice degeneration patient is over 25 years of age and may be myopic (nearsighted). It is typically found in both eyes. Estimates are that 8 to 11 percent of the population has peripheral retinal changes that are categorized as lattice degeneration.

Lattice does not typically cause symptoms, but if symptoms occur, they include photopsia, or flashing lights in the patient's peripheral (side) vision.

Many vitreo-retinal physicians associate lattice with higher risk of retinal detachment. Retinal holes can occur in the lesions and tractional retinal tears can develop in rare cases."

marijen

Here's a link I had - it shows a detached retina and other images. Forgot I had this link:

http://www.goodhopeeyeclinic.org.uk/pvd.htm#dr

marijen

It would really be great if there was someone here with an understanding of chemistry who would go to www.dailymed.com, pull up Letrozole, and analyze all the inactive ingredients so that we would know which manufacturer would be best torequest for our prescriptions. Woo! That's a long sentence.

windingshores

My oncologist at a major cancer center okayed me taking half a pill per day. I take the brand name because I have immediate reactions to every generic I have tried.

I thought I would post info from Novartis' drug insert concerning dosage:

 Pharmacodynamics

In postmenopausal patients with advanced
breast cancer, daily doses of 0.1 mg to 5 mg Femara (letrozole) suppress plasma
concentrations of estradiol, estrone, and estrone sulfate by 75% to 95% from
baseline with maximal suppression achieved within two-three days. Suppression
is dose-related, with doses of 0.5 mg and higher giving many values of estrone
and estrone sulfate that were below the limit of detection in the assays.
Estrogen suppression was maintained throughout treatment in all patients
treated at 0.5 mg or higher.

Letrozole is highly specific in inhibiting
aromatase activity. There is no impairment of adrenal steroidogenesis. No
clinically-relevant changes were found in the plasma concentrations of
cortisol, aldosterone, 11-deoxycortisol, 17-hydroxy-progesterone, ACTH or in
plasma renin activity among postmenopausal patients treated with a daily dose
of Femara 0.1 mg to 5 mg. The ACTH stimulation test performed after 6 and 12
weeks of treatment with daily doses of 0.1, 0.25, 0.5, 1, 2.5, and 5 mg did not
indicate any attenuation of aldosterone or cortisol production. Glucocorticoid
or mineralocorticoid supplementation is, therefore, not necessary.

No changes were noted in plasma
concentrations of androgens (androstenedione and testosterone) among healthy
postmenopausal women after 0.1, 0.5, and 2.5 mg single doses of Femara or in
plasma concentrations of androstenedione among postmenopausal patients treated
with daily doses of 0.1 mg to 5 mg. This indicates that the blockade of
estrogen biosynthesis does not lead to accumulation of androgenic precursors.
Plasma levels of LH and FSH were not affected by letrozole in patients, nor was
thyroid function as evaluated by TSH levels, T3 uptake, and T4 levels.

Absorption and Distribution: Letrozole is rapidly and completely absorbed from the
gastrointestinal tract and absorption is not affected by food. It is
metabolized slowly to an inactive metabolite whose glucuronide conjugate is
excreted renally, representing the major clearance pathway. About 90% of
radiolabeled letrozole is recovered in urine. Letrozole’s terminal elimination
half-life is about 2 days and steady-state plasma concentration after daily 2.5
mg dosing is reached in 2-6 weeks. Plasma concentrations at steady state are 1.5
to 2 times higher than predicted from the concentrations measured after a
single dose, indicating a slight non-linearity in the pharmacokinetics of
letrozole upon daily administration of 2.5 mg. These steady-state levels are
maintained over extended periods, however, and continuous accumulation of
letrozole does not occur. Letrozole is weakly protein bound and has a large
volume of distribution (approximately 1.9 L/kg).

windingshores

My oncologist at a major cancer center okayed me taking half a pill per day. I take the brand name because I have immediate reactions to every generic I have tried.

I thought I would post info from Novartis' drug insert concerning dosage:

 Pharmacodynamics

In postmenopausal patients with advanced
breast cancer, daily doses of 0.1 mg to 5 mg Femara (letrozole) suppress plasma
concentrations of estradiol, estrone, and estrone sulfate by 75% to 95% from
baseline with maximal suppression achieved within two-three days. Suppression
is dose-related, with doses of 0.5 mg and higher giving many values of estrone
and estrone sulfate that were below the limit of detection in the assays.
Estrogen suppression was maintained throughout treatment in all patients
treated at 0.5 mg or higher.

Letrozole is highly specific in inhibiting
aromatase activity. There is no impairment of adrenal steroidogenesis. No
clinically-relevant changes were found in the plasma concentrations of
cortisol, aldosterone, 11-deoxycortisol, 17-hydroxy-progesterone, ACTH or in
plasma renin activity among postmenopausal patients treated with a daily dose
of Femara 0.1 mg to 5 mg. The ACTH stimulation test performed after 6 and 12
weeks of treatment with daily doses of 0.1, 0.25, 0.5, 1, 2.5, and 5 mg did not
indicate any attenuation of aldosterone or cortisol production. Glucocorticoid
or mineralocorticoid supplementation is, therefore, not necessary.

No changes were noted in plasma
concentrations of androgens (androstenedione and testosterone) among healthy
postmenopausal women after 0.1, 0.5, and 2.5 mg single doses of Femara or in
plasma concentrations of androstenedione among postmenopausal patients treated
with daily doses of 0.1 mg to 5 mg. This indicates that the blockade of
estrogen biosynthesis does not lead to accumulation of androgenic precursors.
Plasma levels of LH and FSH were not affected by letrozole in patients, nor was
thyroid function as evaluated by TSH levels, T3 uptake, and T4 levels.

Absorption and Distribution: Letrozole is rapidly and completely absorbed from the
gastrointestinal tract and absorption is not affected by food. It is
metabolized slowly to an inactive metabolite whose glucuronide conjugate is
excreted renally, representing the major clearance pathway. About 90% of
radiolabeled letrozole is recovered in urine. Letrozole’s terminal elimination
half-life is about 2 days and steady-state plasma concentration after daily 2.5
mg dosing is reached in 2-6 weeks. Plasma concentrations at steady state are 1.5
to 2 times higher than predicted from the concentrations measured after a
single dose, indicating a slight non-linearity in the pharmacokinetics of
letrozole upon daily administration of 2.5 mg. These steady-state levels are
maintained over extended periods, however, and continuous accumulation of
letrozole does not occur. Letrozole is weakly protein bound and has a large
volume of distribution (approximately 1.9 L/kg).

windingshores

ps My oncologist said that the reduced dose would possibly reduce side effects, but I don't see how. The estrogen levels will be pretty much the same with 1.25 as with 2.5mg. I do wonder if other effects on the body will lessen.

I found the first year and a half to be okay as long as I walked more than 20 minutes at a time and did Tai Chi. The past year has been more difficult, more pain and fatigue. It makes sense that the effects of low estrogen would be different as time went on, since it is cumulative. Hot flashes are the worst in the beginning. Pain, fatigue and bone density may worse with time.

At the same time, I feel more anxiety about distant recurrences as time goes on. I didn't realize this would happen but it makes sense. I mean, I expected to be okay for a couple of years but as time goes on that expectation diminishes. I don't obsess about it, just realize it is there and it drives me to stay on this drug.

marijen

Thank you windingshores, it's good to know that it doesn't affect the thyroid function. But how do you get the brand Femara, do you get a special price break because of your previous reactions? What you surmised in your third post I agree with. The letrozole may not be cumulative in the body, the decrease in estrogen still continues, would make sense. I feel more anxiety the more I know that's for sure. Having to go through recurrence is not something I want to deal with but may have to, who knows? I've had the same problem, I was OK on the Roxane brand, but they stopped manufacturing after it was bought by West Ward. The first month of Breckenridge (Brec) was OK, but when I went I went back for 60 more pills, is about when my trouble started..... Yesterday I made a list of changes since that first month on and I've begun to wonder if it could be I changed calcium supplements, or my bone density is going down. Now I've been off of it for several weeks and the arthralgia is better. I had some TEVA last year, didn't like that. Other choices are Sun or Accord. I just don't know. I might try to find the link to your Fermara insert and bring it to my MO regarding reduced dosage. Thanks much.

It seems to me that maybe there is a fine line between decreased estrogen and not enough estrogen and that's when the additional pain kicks in? Comments?

windingshores

By reaction I don't mean a side effect. I mean a neuro and respiratory immediate reaction, like an allergy or sensitivity. I was surprised that TEVA also did this because with some meds, only TEVA is okay for me.

I am on Medicare and do not get a price break, but I get an exception to the formulary. I am about to go into the donut hole and don't know how much my next Rx will cost but it will be absurd. I am discussing this with my nurse practioner on Monday.

I think the effects of lack of estrogen on the body worsen with time. It is basically aging us physically and possibly mentally too.  I think the immediate effect of low estrogen is hot flashes, but the other side effects are like aging telescoped so to speak. I was a Polyanna on here about side effects and suggested walking and exercise. But as time goes on, the side effects seem harder to tolerate.

Of course, cancer would be even harder to tolerate.

marijen

Thanks for the extra info clarification. It hurt to move today and I've been off the Brec Letrozole for weeks. I like that - aging telescoped or magnified. How do I get an exception to the formulary

I have a new article about ctc's and dormant cells. Not sure where to post it. Very interesting. I asked my BS for a CTC test two years ago almost. He lied to me, said he would do it, now I realize he never intended to do it. Ok maybe it was overkill, but I don't like them lying to me

http://assets.cureus.com/uploads/case_report/pdf/7...