FEMARA
Comments
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Bossomblues....they never prescribe a lower dose because there are no studies to back it up. I think what you are asking is there anyway to test our hormone levels. Of course there is but most MOs don't do it. They wait to see if you have a recurrence to see if it is working! A little crazy. Naturopathic docs do test hormone levels and prescribe accordingly. Good luck to all
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I asked a senior MO and the Seattle Cancer Center Alliance about testing hormone levels and the lowering the letrozol to the dose that zero's out the blood test. She said that the hormone tests are not sensitive enough to pick up very small amounts of estrogen that can still drive the cancer. She also said the letrozol has other modes of action so if you reduce the dose you lose that effect.
This lady was not a person who thinks outside the box. I definitely wanted out of the box and made that clear. Her prime goal on all the questions I asked was to put me back in the box. Many people do lower doses of letrozol and naturopathic docs do prescribe differently. But that is the answer you get from someone who goes by the book.
>Z<
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Zarovka, that fits with what I have been told by several docs, including an orthopedist (for bad back and impending osteoporosis) and an onc, who both do think outside the box. I was also told that hormone levels fluctuate a lot, so any reading you take could be off. Naturopaths claim they can accurately judge hormone levels with a saliva test, but the science to back the claim apparently just isn't there.
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I've had this discussion with my MO after my PCP ordered blood work to test my estrogen levels. Estrogen levels in the blood can be very different and usually much lower than estrogen produced within cancer cells, so doctors will tell you that the blood plasma levels are meaningless and that there is no way of knowing if AIs work on your cancer cells until they stop working. NEVERTHELESS, I think blood work does show if the AI is doing its job at lowering estrogen levels and also if you may have some residual ovarian function after menopause. When I first went on Letrozole (generic), my PCP tested blood estrogen levels after about 3 months. The estradiol and estrone were still in the normal range, meaning either the drug was not working for me or that my ovaries were still producing small amounts of estrogen. Before having my ovaries removed, which was recommended by my gyn, I decided to switch to brand name Femara. After just 2weeks, I retested my estradiol (I ordered this myself through Life Extension - the ultra sensitive estradiol test costs $75. They send you the order and LabCorp does the blood test) and it came back showing about 90% reduction in estradiol compared to the previous test. I can't say if the Femara is working on any tumor cells still floating around in my body, but it makes me more comfortable knowing that it is at least lowering estradiol in my blood, and that my aromatase enzyme is not somehow mutated to become resistant to the AI. I don't know what this says about the generic form of Letrozole that I took initially. Maybe I just got a bad batch?0
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zorovka...the issue isn't picking up trace levels of estrogen. The issue is trying to figure out if the drug is working. We should at least try to see if our levels are moving in the right direction! Not just wait to see if we have a recurrence. IIMO MOs just do not know enough about female hormones. I also agree with everything grandmaX had to say. Good luck to all.
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Hello all -
I just came over looking for info about skin problems. TammyM43 I also have what I assume (maybe incorrectly) is acne! How did you get to the dermatitis dx? Is this a known SE for Femara? It's making me nuts!!
Barb
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Hi all! I just took my first Femara this morning. I'm on my second month of Zoladex and go for number three next week. I'm going to push to have my ovaries and tubes taken out as I'm doing pretty well with chemical menopause. Although, I did notice an increase in acne as well but from Zoladex? I hope it doesn't worsen on Femara. Question: how long is it before you start noticing side effects, if any, from the Femara? Thank you!
~Amy
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Re estrogen levels, when I (as a stage iv patient) asked my onc about checking my levels, she said there is no correlation between blood hormone levels and survival when using the aromatase inhibitors. It sounds crazy, but she's no slouch. The frustrating answer is no, we don't have a way to tell if the drug is working to ward off mets for a particular woman. We do have statistics that say that as a group, those who took it had better survival than those who didn't. Crazy making, no?
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I just know that for me I will keep taking the pill. I consider all side effects better than increasing the risk of the cancer returning. Just sayin' Love, Jean
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That makes sense to me, Jean!
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ShetlandPony....I don't really understand what your doctor is saying. How could there be no correlation when the purpose of anti hormones is to reduce our estrogen levels as low as possible. I also don't understand how they would know that when most docs don't check our levels. Just really confusing. Good luck to all navigating this disease.
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Dtad - Estrogen levels MAY not matter much when you are on Faslodex/Fulvestrant or other drugs that block or disable estrogen receptors. I am not on fulvestrant, so I am not sure. But if you are on a drug that specifically blocks hormone production like letrozol (or as I like to call it F@#kin' Letrozol), the blood estrogen levels need to be zero. The problem is that even if the blood levels are zero there still may be enough estrogen around to trigger cancer growth. The cells evolve to be more efficient in using the tiny amounts of estrogen still available. That is why Faslodex is the second line for ERPR+. It knocks out the estrogen receptors so it matters less ho much estrogen is out and about.
>Z<
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The cancer cells can evolve and mutate so they don't need estrogen at all
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i am curious - I thought the AI didn't stop estrogen production, it just prevents the estrogen from getting thru the receptor?
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zarovka...interesting post. My issue is we should at least be able to detect that our levels are moving in the right direction!
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Stellamaris - AIs inhibit production of estrogen in post menopausal women. After menopause, ovaries stop making estrogen but it can still be made by aromatase, which converts other hormones like testosterone into estrogen. So the aromitase inhibitors (AIs) block this activity and greatly reduce the amount of estrogen produced by cancer cells or anywhere else in our body. Tamoxifen, on the other hand, blocks the estrogen receptor on cancer cells without affecting estrogen production.
Dtad - I agree! It was reassuring to know that my estradiol was below the limit of quantification when I had it measured. I understand that cancer cells can work around this and find other ways to grow without estrogen, but having this confirmation that the AI was doing what it was supposed to be doing helped put me at ease - especially after the first time I had it tested and found out that the generic brand I was on had no real effect on my estrogen levels.
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I have to admit, over the past week I have been a lurker; however, now #*%& is getting real! If my GYN can work me into his schedule, I will be having bilateral ovaries and tubes removed next week and then starting Femara. I think my biggest concern is the emotional/hormonal effect of estrogen depletion. Just eight weeks ago I had a beautiful baby girl (induced at 37 weeks following 6 rounds of ACF) and I feel like I am just now starting to get over the pregnancy hormones. Now I'm looking at no estrogen and the side-effects of the same. Anyone mind sharing how they responded to this hormonal shift immediately after starting Femara and then on down the road?
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HC
I had an oophtectomy very close to chemo and then went on AI. My body had severe side effects ask your MO if they are willing to let you have the shot foe menopause for 6 months ? I think I would have been more successful and not has so much trauma had I given this a chance especially just having had a baby
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Wow! Hikerchic that sounds a bit extreme to me. Have you gotten a second opinion? Did your IDC shrink at all with the chemo? What is the hurry? Is it in your nodes? Are you ok with not having more children
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thank you for the clarification, Grandma3x
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Evidently I have a very "aggressive and nasty" Grade 3. My mass showed no response to chemo and I had 10 out of 18 nodes positive, so the MO believes I need the AI and Lupron or oophorectomy. I'm afraid of the side effects.of Lupron as well as recurrence. On CT I have two lung nodules and one liver nodule so having an MRI to further delineate. It's not an easy decision as to which route to pursue. I just know I want to be around for my baby girl.
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You never know what the sides will be like unless you try the Lupron. Everyone is different with every drug. Will you be having biopsies on your lung nodules and liver? You are right, it's not an easy decision. I'm hoping others will help you out - there's probably a better forum for you.
Here's two links
http://www.breastcancer.org/treatment/surgery/prop...
http://www.breastcancer.org/treatment/hormonal/ovary_removal
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Hikerchic, I had the ooph to allow me to go on an AI. I prepared mentally, and although it was rough, I got through it. You just have to keep firmly in mind that the rollercoaster IS temporary. That said, I had a total fog for about 6 weeks. It was like a depression, of the lethargic kind. I simply could not be arsed to do anything at all. Music helped. Moving helped. At about week 5, I decided that if it didn't lift soon, I would go see a shrink and get some anti-depressants, but then it started lifting. The good news is that once you get through the adjustment period, there are also some upsides to not having all those blasted hormones around.
About the acne, one cause of adult acne is excess testosterone. AIs prevent naturally occurring testosterone from being turned into estrogen. So, it makes sense that acne could be an SE for some. I had adult acne in my 20s, so I suppose my body may already be a bit hyper-active with the testosterone.
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Hikerchic. Perhaps your MO could consider next generation genetic tumor testing such as Foundation One on the tumor since chemo did not have much effect. It'll help give other options.
I had oophorectomy snd did not have too much trouble. You may have more mood swing because of pregnancy hormones and such. I recovered quickly from it and hot flashes are no worse for me than during chemo. I have done pretty well on Letrozole too.
Hoping you are settling in and enjoying your sweet baby. Sorry you've had to deal with so much.Keep us posted.
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according to my BS she says, your own body can make its own estrogen from your fat cells, so there is no way around it, if your body signals you need estrogen, the body can make it regardless. Do the A 1s inhibit this process? Might be a good question for the researchers ? Or if anyone got a better explanation i am game. So far SE not so bad for me
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Well the way around it is to keep your BMI within the normal range. Easier said than done I know. Also realize the anti hormones makes this difficult. Good luck to all...
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has anyone on femera had blood sodium depletion problems. Primary care says restrict fluids but I'm wondering if estrogen has anything to do with it. I'm already so dry everywhere skin, hair, vaginal area etc. restricting fluids?
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@Jerseygirl927, the body needs aromatase to make estrogen. So as long as you're taking an AI, the fat cells will be unable to make any estrogen.
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amylsp is that a definite? Cause yes i take the femara faithfulliy, but was told body can still make its own estrogen from fat cells in body. Thats from the srurgeon. Any studies to back that up
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Hi Jerseygirl - yes, that's definite Your BS was probably referring to the fact that most estrogen is produced by the ovaries, but after menopause the fat cells can still produce estrogen. The way they make it - using an enzyme called aromatase- is different from how the ovaries do it, so post menopausal women can take AIs to stop production. Nevertheless, as dtad said, maintaining a low BMI helps. 0
