Letrozole and checking estrogen levels

Posted by 2r3b @2r3b, Sep 3, 2022

I have been taking Letrozole for 6 months. Is there a test (ideally a test that is sensitive and can indicate if the AI is actually working) that can check my estrogen levels? The only Estradiol test I have had was one that was checked just to confirm "menopausal status" a few months after removal of ovaries. However, this test was not very sensitive as it was not sent to a special lab and the results were received in just a few hours. I would have anticipated a lower number, but my Oncologist indicated that it was not a very sensitive assay. I would just like another potential test option that is more sensitive/comprehensive if possible.

Thank you for any thoughts!

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@californiazebra

@windyshores My question here is, if 20% of the standard dose is enough to make estradiol levels undetectable, why are we all taking the full dose? Higher dose means more side effects. I feel like I'm missing something here. Is there more to that? Is something different about the 20% vs. 100% dose outcome? Thanks for elaborating if you can.

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Hi….I wondered the same thing about the full dose vs a smaller dose. I’ve looked up some studies that show taking Letrozole every other day is pretty much the same and helps reduce the toxicity of side effects. There are some women already doing this with the blessings of their oncos. The latest article was in Pubnet. Planning on asking to go that route.

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@windyshores

@cherziggy many of us tolerated these meds pretty well. I hope you will at least try 🙂 And in my experience the body adjusted so I think it is good to give it a little time before deciding whether to stay on. Just my opinion.

@californiazebra I don't know why side effects would be different at 100% versus 20% dose. I just don't understand but a doc could explain. To me, if the AI is effective, that means it has reduced estrogen below detectable levels. Side effects would be from the estrogen suppression, no matter what the dose. So wouldn't side effects be the same at all levels of medication, if it was working?

My doc did say we can take them alternate days- I never did. The doc mentioned reducing side effects this way but I would love to know what the mechanism for that would be, since estrogen suppression is the cause of side effects, presumably.

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@windyshores Thanks for the response. You make a good common sense point about the side effects being caused by the result rather than the med. None is none as far as estrogen is concerned. I see another comment after this about the reduced dose causing less side effects so I guess I need to do some research. Like your earlier comment though, it would probably make me nervous to reduce the dose. If it ain’t broke don’t fix it.

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@mandy75

Hi….I wondered the same thing about the full dose vs a smaller dose. I’ve looked up some studies that show taking Letrozole every other day is pretty much the same and helps reduce the toxicity of side effects. There are some women already doing this with the blessings of their oncos. The latest article was in Pubnet. Planning on asking to go that route.

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@mandy75 I would love to see any studies. My doc told me I could alternate days but I never did. I totally believe effectiveness is the same (given that 20% is effective and half life allows for that in the day not taken). But I would like to see a study showing that side effects are less.

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@windyshores

@mandy75 I would love to see any studies. My doc told me I could alternate days but I never did. I totally believe effectiveness is the same (given that 20% is effective and half life allows for that in the day not taken). But I would like to see a study showing that side effects are less.

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4740217/

There are more studies out there that I’ve read. I’ve just googled Letrozole every other day and lost myself in the rabbit hole. This will be my next discussion with onco. Hope this helps!

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@semurrey

Hi @ssalget - I hope you are correct but I only read studies with its effects on pre menopausal breast cancer - see below link - small sampling but it did study post menopausal women and showed no significant impact on the ratio. How much do you take?

https://pubmed.ncbi.nlm.nih.gov/15623462/

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I take 200 mg. I also take 250 mg of grape seed extract.

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@mandy75 if you read the study, it says that effectiveness between 1mg and 2.5mg w/different dosing intervals was (mostly similar) but so were the side effects. Which makes sense to me. That is why I continued on the daily dose for 5 years.

From the study you linked: on side effects/Q of L
"The results of the quality-of-life responses at the end of letrozole intervention are summarized in Table 4. For the mental and physical domains of the SF-36 tool, no differences were observed in the proportion of women who experienced worsened, stable, and improved QoL scores among the treatment groups. For MENQOL assessment, the majority of study participants did not experience a clinically meaningful change in the QoL scores within the psychosocial, physical, or sexual domains. No differences were observed in the proportion of women who had worsened, stable, or improved QoL scores among the dose groups for each domain assessed in MENQOL.?

ps on effectiveness:
"In this double-blind, randomized clinical trial of high-risk postmenopausal women, effective estrogen suppression was demonstrated across all dosing regimens of letrozole: 2.5 mg daily, 2.5 mg Q-MWF, 1 mg Q-MWF, 0.25 mg Q-MWF. Following 24 weeks of treatment, estrogen suppression averaging between 75 – 78% and 86 – 93% from baseline, was observed for serum E2 and E1 levels, respectively. The extent of estrogen suppression with low and intermittent letrozole doses was non-inferior to the standard daily dose. Estrogen suppression in the standard dose arm was observed six weeks following drug discontinuation, with E2 and E1 levels suppressed by 29% and 40% from baseline, respectively. The recuperation of estrogen levels 6 weeks after letrozole discontinuation occurred in all treatment arms with a trend favoring dose-dependency."

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@ssalget

Thank you. I was told that I would be seeing the Oncologist every six months, if I was taking the AI. She does a physical exam of the chest area and palpates, I assume looking for lumps? My cancer was lobular which I am told does not organize as a lump, but I have no breast tissue in that area, so I'm not sure what the palpation is for. They offered me exemestane. So far I have chosen not to start taking it. I had a heart attack before they found breast cancer. And my bone scan showed osteopenia. My mother died from falling and fracturing her hip. It was a very long and painful death. I want to avoid that experience if I can, and I want to keep my arteries strong. I have not made an appointment with an integrative or naturopathic oncologist yet. I am looking for one I can afford, and I may have to change my medicare advantage plan.
Hoping for the best for you, as well.

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Hi ssalget:

As your post is from Oct. 2022, were you able to get an Integrative Oncologist? Would they be in place of a Medical Oncologist?
How are your bones and have you started an AI at any point?
What are you doing for bone health?

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@timely

Hi ssalget:

As your post is from Oct. 2022, were you able to get an Integrative Oncologist? Would they be in place of a Medical Oncologist?
How are your bones and have you started an AI at any point?
What are you doing for bone health?

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I have not yet found an Integrative Oncologist. I'm hoping to change my PCP to a doctor at University of Washington Medical that is interested in Integrative Medicine. My current understanding is that a Medical Oncologist will offer help with natural solutions for side effects from the medications. I need to find a practitioner who will take my insurance. I am on Social Security and have a limited income. I have chosen not to take an AI and, after a year, my hands and body are no longer in pain. I am using a number of online breast cancer coaches. Using the supplements I can afford. Eating whole foods, which I did before cancer. Walking. My Medical Oncologist will still see me once a year for screening palpation. I am due for a bone density test this year. I was diagnosed with osteopenia in 2021. I had a heart attack that led to my cancer diagnosis and am leary of taking an AI for that reason, as well. My cardiologist has left U of W medical and I have not been able to get an appointment with a new provider. All in all I am doing well and getting on with living. Working on clearing some emotional trauma and working on forgiveness, staying positive and grateful.

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@ssalget

I have not yet found an Integrative Oncologist. I'm hoping to change my PCP to a doctor at University of Washington Medical that is interested in Integrative Medicine. My current understanding is that a Medical Oncologist will offer help with natural solutions for side effects from the medications. I need to find a practitioner who will take my insurance. I am on Social Security and have a limited income. I have chosen not to take an AI and, after a year, my hands and body are no longer in pain. I am using a number of online breast cancer coaches. Using the supplements I can afford. Eating whole foods, which I did before cancer. Walking. My Medical Oncologist will still see me once a year for screening palpation. I am due for a bone density test this year. I was diagnosed with osteopenia in 2021. I had a heart attack that led to my cancer diagnosis and am leary of taking an AI for that reason, as well. My cardiologist has left U of W medical and I have not been able to get an appointment with a new provider. All in all I am doing well and getting on with living. Working on clearing some emotional trauma and working on forgiveness, staying positive and grateful.

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You sound like you are organized and doing everything that you can to carry on, heal mind, body, and spirit, and go forward.

My medical oncologist cleared all the herbal and other remedies that I was taking and allowed me to continue my asking all except vitamin C during radiation. I could start it again after.

If you wish, you could tell your medical oncologist what you are taking even though you see once a year and they will reply.

Really important to get a cardiologist lined up.
Ask your primary doctor for a list of cardiologists he recommends who are taking patients or get a list from your insurance company.

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@anjalima

I too inquired about having a baseline estrogen level before starting AI. I was told by oncologist that it isn’t necessary because the AI result they are looking for can’t be measured. AI blocks estradiol from converting to estrogen. But I still don’t understand why this ( baseline /change) cannot be measured.

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I agree! How do they know it works if it can’t it be measured?

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