FEMARA

MargoChanning

marijen - thanks for posting this interesting article. My previous MO that I'd been with for 4 years since diagnosis, used to do CTC tests on every visit every 4 months. Now I'm with an HMO (employer insurance changed) and although the new MO says he might be able to get permission to do the CTC test it may be difficult to get it approved since it's not in the guidelines. I'm pushing him to get it approved; it provided me with some semblance of stability to know there were no markers showing up. Since I will likely not continue with Letrozole past 5 years when I finish later this year, I will want to have some kind of test other than a mammogram, in which I have little faith, to tell me my status.

marijen

You could drop off the article with a note requesting the test

marijen

BB if one says she will do it I would take her up on that! Just leave a message and ask her to order it. They have done the two CA- tests and they were normal and they have done the CEA for me, out of range but stable. The CEA unfortunately will measure other things, MO told me even if I lived with a smoker. Or some inflammation somewhere in the body. Since it's out of range I get it every three months. I'm going to ask her for the CTC in two months. BS told me it can come back false negative or false positive but.... it would still set a baseline. And there is a study that says it can catch CTC's 11 months before symptoms shows up. I won't say what I think about him

windingshores

Marijen thanks so much for the article. Just in time for my appointment tomorrow with my oncologist. One hospital did CTC's for me two years ago but my current one doesn't do them. I will ask. 

marijen

The more we ask for things the morecommon it will be for them to consider. Let me know how the tests turn out.

Anonymous

I've never had CTCs done and last year they would have helped me keep from this situation. I will ask for them. Marijen said, "The more we ask for things the more common it will be for them to consider. " and it is so true.

marijen

BB check the symptoms for parathyroid and see if you have any. Since when does calcium run high? Do you take supplements? I'm not convinced you have a good PCP. Look at Chisandy's post at AI and Walkin Away, she says most BC patients are treated for bone loss, bisphosphonates

marijen

They tell me I'm complicated too. Anyways, I am reading What Doctors Won't Tell You About Breast Cancer. You van get at Amazon Kindle for $8. Well worth it

ChiSandy

My MO doesn’t check CTCs in early-stage breast cancer, period—only if there is a high suspicion of recurrence or mets, or they’ve already occurred.

Ozoner

Hi all. I just had retinal images made at the eye doctor's, and my right eye has the beginning of macular edema, which she sees in patients who take Tamoxifen. We will "wait and see" with follow-up images yearly, or more often if I have symptoms. She said that worsening could thicken the tissue and cause vision problems. I'm very glad I found her, because my previous ophthalmologist never mentioned it

marijen

my opthamologist said Letrozole can cause edema (swelling) at the back of the eyes. I don't want to wait and see. Once things go wrong treatment if any is worse, like surgery. My eyes are too important. I have hundreds of floatersp but still have healthy eyes and can see through. The brain has a way of learning to ignore the floaters at least until they cannot be ignored any longer. Recently all I've I'm hearing is how bad Tamoxifen is. JM.02

marijen

I was on Letrozole. Letrozole is supposed to be the most effective AI. You could do a search such as "compare aromatse inhibitors" and see what you come up with.

marijen

HapB there are other topics. AI and blurry eyes, Femara and vision problems. AI and recurrence.

This was posted here, you can read back a few pages

This is posted at Femara and vision problem
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC32058...

marijen

It hasn't stopped growth but it did start thinning so I take 5000mcg Biotin everyday. It made a big difference

stellamaris

awesome! We started our journey in similar timeframe and u r an inspiration for me. 😃

marijen

whoops I posted this at Walking Away.

7 minutes ago marijen wrote:

No, I had all my hair but right about dx I started losing before the biotin. I started Letrozole right after dx too. You just have to try it and see. If your hair is real short you can rub cod liver oil into your scalp it's supposed to grow hair, eyebrows and lashes. Don't get it in your eyes but not dangerous. Some people take it internally.

There's a chemo drug that can make you go bald for life, but not AI.

Thank you stellamaris

Ozoner

When I messaged my MO last year that I was seeing floaters and flashes, he got me an appt that day at an ophthalmologist. The eye doc found nothing wrong w my retinas but said he could see a few floaters that would be normal for a woman my age.

The woman doc at America's Best yesterday showed me a light dotting on the image, which could be an early sign of edema. She was familiar with this Tamoxifen SE, and her advice was to report any vision changes and to get yearly retinal images. She also answered questions about my family history.

She said the surface of the macula area was almost like cellophane, which could eventually thicken. I should report any vision problems.

Not perfect news, but what a relief to talk to someone who didn't summarily dismiss my concerns.

TKDBOB

Anyone experiencing coughing after starting FEMARA

TKDBOB

I can tell you that floaters are common and nothing to worry about, I have had them for a few years now and eventually you won't even notice they are there.

marijen

Reposting

Vitreous Detachment

What is a vitreous detachment?

A vitreous detachment is a condition in which a part of the eye called the vitreous shrinks and separates from the retina. The vitreous is a gel-like substance that fills the inside of the eye ball. The retina is a light-sensitive area at the back of the eye. A vitreous detachment is also known as a posterior vitreous detachment.

In most cases, a vitreous detachment alone does not harm vision and requires no treatment.

What causes a vitreous detachment?

In normal eyes, the vitreous is attached to the surface of the retina through millions of tiny, intertwined fibers. As we age, the vitreous slowly shrinks, and these fibers pull on the retina's surface. If the fibers break, the vitreous can shrink further and separate from the retina, causing a vitreous detachment.

Who is at risk for a vitreous detachment?

A vitreous detachment is a common condition that usually affects people over age 50.

People who are nearsighted are at increased risk for vitreous detachment earlier in life. Those who have a vitreous detachment in one eye are likely to have one in the other eye, but this might not happen until years later.

What are the symptoms of a vitreous detachment?

One of the main symptoms of vitreous detachment is presence of floaters. As the vitreous shrinks, it becomes stringy. These strands can cast tiny shadows on the retina. These shadows are floaters. Floaters can look like little "cobwebs" or specks that seem to float about in your field of vision. If you try to look at them, they seem to quickly dart out of the way.

People with vitreous detachment might have a small but sudden increase in the number of floaters. This increase can come with flashes of light (lightning streaks) in your peripheral (side) vision. Most people with vitreous detachment will not notice any symptoms. Or, if they do, the symptoms are only annoying and do not interfere with their daily lives.

How does vitreous detachment affect vision?

A vitreous detachment does not harm vision on its own. But in some cases, the fibers can pull so hard on the retina that they create a macular hole, or a retinal tear that leads to a retinal detachment. These are serious conditions. Without treatment, a macular hole or detached retina can lead to permanent vision loss in the affected eye. If you have any of the symptoms above, see your eye doctor right away. Early treatment can help prevent vision loss from a macular hole or retinal detachment.

Can vitreous detachment lead to retinal detachment?

Sometimes. Retinal detachment happens when any part of the retina, the eye's light-sensitive tissue, is lifted or pulled from its normal position at the back wall of the eye. This can happen directly after a vitreous detachment.

When the vitreous detaches from the retina, it is much like an address label being peeled off of an envelope. Sometimes, the label comes off cleanly, but other times, it tears some of the underlying envelope in the process. If the vitreous tears the retina when it detaches, the tear can worsen into a retinal detachment.

Normally, it takes three months after a person's first floater for the vitreous to completely detach. If you have a floater for the first time, you should see your eye doctor regularly during the months following so that he or she can make sure you don't have a retinal detachment.

If a retinal detachment is caught early, it can usually be treated with laser treatment in the eye doctor's office. If the retinal detachment goes untreated for too long (sometimes for only a few days), a much more serious surgery such as vitrectomy or scleral buckle might be required.

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.

Ozoner

Thank you, Marijen!

I'm well over 50 and have seen floaters in the past. I only got worried when I noticed them on Exemestane. That was last October and I had two checkups.

Thanks to your information, I realize that the slight changes and in my eye are not a cause for great alarm, but if I see a shower of dots or any other warning sign, I'll go to the ophthalmologist immediately.

After my mother's cataract surgery, she developed a macular hole and had surgery. She was a heavy smoker and was experiencing early dementia, so her recovery wasn't that successful, which was disturbing for those who loved her. She lived to be 90, but her vision in that eye was limited.

The checkup I had this week wasn't from an ophthalmologist, but I'll be seeing him for a follow up. Thank you for your comforting and informative post.

marijen

More than welcome Ozoner, our eyes are precious. It's irresponsible to throw out general statements like not to worry. That's what our doctors do! Any changes in the eyes and one should go to the doctor or ER immediately depending. A few days can be too late. People have to educate themselves too, doctors are way too busy for a full explanation in a 15 min. appt.

Bliss58

Optometrist referred me to an ophthalmologist who I saw last week. First dr. was concerned about both my retinas "thinning," thus the referral for possible laser tx. I do have floaters, but they come and go as I blink and I don't really notice them. Ophthalmologist said I do have lattice degeneration in several areas of both eyes, that technically can lead to an increased risk of retinal tear or detachment, but said laser tx is not warranted at this time. Just need to be aware of suddenly having lots more floaters or seeing flashing lights, and in those cases, come in right away. He said most people, and I may be one, will go through life having this condition without it ever seriously affecting the retinas.

HapB, I was on TCHP, and once that ended, it took three months before my hair even started to grow back, and then it grew very slowly. Are you still on Herceptin? I've heard that H can slow growth of hair and it did seem after my year with it was up, that my hair really started to grow faster. I started on Anastrozole six months after chemo ended and at that time, I had hair albeit very little. After seven months on it, and my hair was getting much longer, I was switched to Letrozole because of joint pain. Now my joint pain is better, but I notice my hair is thinning in the front; never noticed that on Anastrozole. I don't notice my hair coming out, but it just seems a lot thinner in front; grows in thickly everywhere else. It's hard to say how one AI might affect you until you try it because SEs can be so different for each person.

marijen

BJS did you discuss with the opthalmologist that you are taking letrozole which decreases your estrogen and ages you faster, including your eyes? And if you did, did he have a clue what letrozole is or was he aware of the studies that have been posted here and a femara and vision problems? You might not qualify for treatment now but he should be made aware, right

Bliss58

Marijen, yes I did discuss the Letrozole with him and he knew what it was. I actually didn't take any studies with me, but that's why he'd like me to follow up with him in future, but for now, he thinks I'm okay with a wait and see approach. He said if I were leaving the country to be a missionary, say in remote Africa, then he'd be more concerned about taking a more proactive approach. Edited to add: the dr. I saw is a retina specialist.

Kicks

My experiences with eye issues -

About 6 yrs ago, I developed cataracts. Eye surgeon said it was because of age (65), light green eyes and years of a lot of outdoor time. June, 2013, was out with Hubby riding around with Hubby on Sat. afternoon when all of a sudden had several large black floater that 'just appeared'. 1 - 2 hrs later the large floaters 'burst' into thousands of 'pinpoint' dots. Sunday they were gone. Mon, an 'oil looking' spot appeared in lower inner right eye. Called my eye clinic and was told to go to the Urgent Care at the Facility. So went there as soon as Hubby could get off to drive me the 45 miles. Dr said he thought retina was detaching and got me an appoint the next morning at the local Eye Institute which turned out to not be a good experience. I had to fight with the Institute the next day when I could no longer see at all out of that eye to get a sent to a Retina Specialist in private practice as their Retina Specialist would not be available for quite some time. I saw Dr H. the next day and he did the gas bubble procedure which seemed to be working but 4 weeks later it re-detached ('oil spot' again) so got into see him that afternoon and it was off to surgery the next day. About a year later the retina in other eye detached (again an 'oil spot') but I was able to get into him within 2 hrs and the gas bubble did work.

TKDBOB - it is true that many people do have floaters for years (as you say you have had) but to make the statement "they are nothing to worry about" is not true at all for everyone all the time. They can be a reason (especially if any changes) to seek immediate care from an Eye Dr.(not an Optician).

Ozoner - Sight is so precious and so delicate! Saying that "the slight changes and in my eye are not a cause for great alarm". I sincerely hope that you do not ever have to realize that you may have lost sight in either eye. I can assure it is nothing I would wish on my 'worst enemy' having been there had I not raised enough 'Hades' to get a great Dr! Oh - you mentioned that your Mom was a big time smoker - I have never smoked in my life.

Momine

As for hair, I have been on letrozole for 6 years by now. I had extensive chemo and lost all my hair, twice, during treatment. The hair grew back, and it is as thick as it was before treatment. So, I may be the odd one out, but it is not a given that letrozole will hurt your hair.

marijen

What am I missing? Women intheir 60s most likely to be dx'd with hormone positive cancer. How come? Don't younger women have more estrogen?

marijen

WEDNESDAY, Aug. 23, 2017 (HealthDay News) -- An inexpensive over-the-counter antioxidant/zinc supplement that may help preserve vision in older people is also cost effective, a new study suggests.

The combo pill has been dubbed the "Age-Related Eye Disease Study (AREDS)" supplement, based on trial in which it was studied previously.

Dr. Aaron Lee, a researcher on the new trial, said his team found AREDS was "greatly cost-effective for the treatment of age-related macular degeneration, specifically in people who have active wet, age-related macular degeneration in one eye and dry in the other." Lee is assistant professor of ophthalmology at the University of Washington in Seattle.

Macular degeneration is a progressive disease that's a major cause of vision loss in older Americans.

The new study suggests the AREDS supplement may delay the need for more expensive treatment of the "wet" form of the illness, especially, Lee said.

Exactly how the supplements work to slow progression of the eye malady isn't known, he added, but "the current formulation of the supplementscontain antioxidants that are thought to be protective of the retina from damage that results in wet age-related macular degeneration."

Still, at least one U.S. eye expert challenged the idea that the AREDS supplement definitively showed a benefit in preventing the disease or its progression.

"Despite this being routine practice among many retinal specialists in the U.S., the benefits remain uncertain," said Dr. Alfred Sommer, professor of ophthalmology at Johns Hopkins University School of Medicine in Baltimore.

According to the American Macular Degeneration Foundation (AMDF), age-related macular degeneration causes damage to the macula, a small spot near the center of the retina. It's the part of the eye needed for sharp, central vision. Over time, vision can become blurry, and eventually patients can lose their eyesight.

The two basic types of macular degeneration are called wet and dry. About 10 percent to 15 percent of the cases of macular degeneration are the wet type.

In wet macular degeneration, blood vessels grow under the retina and macula. These new vessels may bleed and leak fluid, causing the macula to bulge or lift up from its normally flat position, thus distorting or destroying central vision. Vision loss may be rapid and severe.

Approximately 85 percent to 90 percent of the cases of macular degeneration are the dry type. Dry age-related macular degeneration does not involve any leakage of blood. Instead, the macula may deteriorate and waste products from cells in the eye can build up. Loss of vision can occur, according to the AMDF.

The prior AREDS trial showed that the supplements, which combine antioxidant vitamins with zinc and copper, are inexpensive and effective in slowing the progression of age-related macular degeneration.

AREDS supplements are sold under brand names such as PreserVision and Pro-Optic. Costs range from about $25 to $40 for 120 pills -- a two-month supply.

That's a much lower price tag than expensive prescription drugs called anti-VEGF therapies, which are currently used to treat wet macular degeneration. Plus, anti-VEGF drug therapy involves getting a needle in the eye, and the drugs can also have side effects. One possible side effect is an increased risk of inflammation of the inside of the eye, and another possibility is stroke, Lee noted.

So, to calculate the cost-effectiveness of AREDS supplements, Lee and colleagues looked at the use of the supplements in people over 55 years of age.

The AREDS trial had concluded that a daily supplement combining high-dose antioxidants and zinc lowered the risk of developing wet age-related macular degeneration and slowed its progression.

Lee's team looked at two formulas of available supplements.

Formula 1 has high doses of vitamins C and E, beta carotene, zinc and copper. Formula 2 has lutein and zeaxanthin instead of beta carotene.

The researchers used a statistical model with information from the AREDS trial, along with data from more than 90,000 people with macular degeneration in the United Kingdom.

The investigators found that both formulations were cost effective for treating patients with early stage disease, but they were even more cost effective for those with the condition in only one eye.

Over the course of a lifetime, the researchers found that these patients would need nearly eight fewer injections of anti-VEGF therapies into their eye, Lee said.

That could lead to thousands of dollars in savings per patient over time, the British team concluded.

But Sommer, who reviewed the new findings, did have some caveats.

Sommer noted that "it is now, in fact, common practice for ophthalmologists in the U.S. to recommend that their patients who fit this profile take this supplement."

He added, "If one believes the supplement does work in the group in which it appeared to, then the whole issue is cost, since no evidence has ever been reported that shows harm."

But does AREDSactually work?

According to Sommer, no large-scale study has been done to test that out. And the AREDS trial researchers used to tout these supplements was small, so that any positive results might still be a chance occurrence, he noted.

Sommer's conclusion: "Despite this being routine practice among many retinal specialists in the U.S., the benefits remain uncertain."

Therefore, "any analysis of the cost for the benefits are somewhat meaningless when viewed from this perspective," he said.

The study was published Aug. 23 in the British Journal of Ophthalmology.

tangandchris

I'm not sure where to post this question, so here goes. I have not taken Femera since FEB, actually even before that it was hit or miss because of s/e's. I finally threw in towel and stopped and my MO has no idea. I go back in October and wonder what the reaction will be from my doctors when they find out. Will scans be requested you think? Idk, I'm just thinking about stuff and thought I'd throw it out here.