Ibrance and Letrozole: Newly Diagnosed Treatment

Posted by sharonyb4000 @sharonyb4000, Sep 30, 2021

Hello,
My name is Sharon, I am 56 years old, and I have recently been diagnose with IDC Breast cancer the has spread to my lymph nodes and metastasized to various areas (Rib, sternum, spine, and iliac bone). Apparently I am one of the 6% of women who receive this type of diagnosed with no previous cancer diagnosis. I was completely overwhelmed when I received these diagnoses from all the scans, tests, and biopsies. So now I am learning how to live with an advanced diagnoses and my oncologist started me on Letrozole and Ibrance to slow the progression of my cancer. Does anyone have experience with this treatment?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

@joanner

I tool Letrazole for 4 years after receiving all of my tax for Her2+ (chemo and radiation). I think it’s an added bonus to help prevent recurrence bit decided not to finish the 5th year. The prevention stats are minimal in terms of 4 and 5 years and I could no longer stand how I felt on that medication. Gained weight, incredible fatigue that prevented me from exercising, and chronic muscle, joint, bone pain. I take a lot of vitamins now and eat plant based diet. I have so much more energy and can exercise, etc. I feel like It’s much better for me to be physically active and reduce weight which can contribute to cancer and use diet and vitamins rather than feel like I’m 20 years older. I’m 69 and wish western medical approaches emphasized diet and vitamins over these other drugs. Their IS a lot of research that does prove it helps.

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Since I'm trying (hard) to improve diet and at least make one of meals every day 100% plant based, did you feel any differently after switching to that eating plan? I've generally paid attention to nutrition, albeit casually so and have the world's worst sweet tooth, so I'm not expecting anything miraculous if I can follow a 100% organic, whole food/plant-based diet but I'm sure it can't hurt me. And I'm for anything that might better-help support the immune system.

I also am a volunteer in South Florida's Mounts Botanical Garden so am surrounded by people growing rare fruits and great vegetables. And the Hippocrates Institute, formerly headquartered in Boston, is nearby so I've heard a lot of stories of people getting serious about clean foods and, in many cases, also rebuilding health. [And I've seen family pets' health improved by careful nutrition. And can disregard any placebo effect to account for that.]

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@joanner

I tool Letrazole for 4 years after receiving all of my tax for Her2+ (chemo and radiation). I think it’s an added bonus to help prevent recurrence bit decided not to finish the 5th year. The prevention stats are minimal in terms of 4 and 5 years and I could no longer stand how I felt on that medication. Gained weight, incredible fatigue that prevented me from exercising, and chronic muscle, joint, bone pain. I take a lot of vitamins now and eat plant based diet. I have so much more energy and can exercise, etc. I feel like It’s much better for me to be physically active and reduce weight which can contribute to cancer and use diet and vitamins rather than feel like I’m 20 years older. I’m 69 and wish western medical approaches emphasized diet and vitamins over these other drugs. Their IS a lot of research that does prove it helps.

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I agree. I had a partial mastectomy in February and after researching all the info on the anti-estrogens and radiation, I decided not to take them because I did not want to live with the debilitating side effects. I am working with a Naturopath, doing the supplements, vitamins, veggie diet, exercise and taking Viscosan shots ( a derivative of mistletoe that has been used in Europe for over 30 years to fight cancer). So far I have no side effects except turning a bit orange from all the carrot juice! lol A number of good books out there, one is; Chris Beat Cancer. Gives a lot of information about the more natural treatments. I think it is a very personal decision and you need to do what you feel is right for you and what you believe will help. Good luck to all.

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@callalloo

That last sentence of mine should read ..."the 'average risk of recurrence [for estrogen positive breast cancer] is currently thought to be REDUCED by ~45%, over 5 years, for women taking anti-hormone therapy."

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You have to be careful with looking at the percentages and know whether they are telling you the "absolute" percentage or the "relative" percentage. You need to ask that question.
For instance, in my age group, if I do not have radiation there is a 6% chance of me having the cancer return - which means there is a 94% chance it won't! That is the ABSOLUTE percentage. If I have the radiation it reduces the chance of me getting the cancer back to 3%.
Now when the oncologist was telling me about the anastrozole, she said if I took it, it would reduce my chances of getting the cancer back by 50% because if you compare the 6% chance to the 3% chance - that is a 50% reduction, but it is the RELATIVE percentage - in other words, 6% compared to 3%. BUT the absolute value is that without the anti-hormone therapy or radiation I had a 94 % chance of getting it back, and with the therapies, I had a 97% chance of getting it back. For a 3% chance, it was not worth it to me to brave the side effects.

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Make sure you ask if they are giving you the "Relative" percentage, or the "Absolute" percentage.

For my age group I have approximately (depending on the article you read) 6% chance of the cancer returning if I don't do the radiation and anti-hormone therapies. That means I have a 94% chance of it not returning.

If I take the therapies I have a 3% chance of the cancer returning. That means I would have a 97% chance that it would not return. These are the "Absolute" percentages.

My oncologist told me that if I took the therapies, it would improve my chances of not getting the cancer back by 50% -- because comparing 6% to 3% is a 50% reduction. That is the "Relative" percentage. But looking at the glass half full -- I have a 94% chance with no therapy and a 97% chance with the therapies and all their side effects. So my decision was no therapies.

Just a note that depending on what articles you research the numbers can change a bit, but you still need to be aware of the difference between the "Relative" and "Absolute" percentage values. Just FYI.

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@shortie0650

You have to be careful with looking at the percentages and know whether they are telling you the "absolute" percentage or the "relative" percentage. You need to ask that question.
For instance, in my age group, if I do not have radiation there is a 6% chance of me having the cancer return - which means there is a 94% chance it won't! That is the ABSOLUTE percentage. If I have the radiation it reduces the chance of me getting the cancer back to 3%.
Now when the oncologist was telling me about the anastrozole, she said if I took it, it would reduce my chances of getting the cancer back by 50% because if you compare the 6% chance to the 3% chance - that is a 50% reduction, but it is the RELATIVE percentage - in other words, 6% compared to 3%. BUT the absolute value is that without the anti-hormone therapy or radiation I had a 94 % chance of getting it back, and with the therapies, I had a 97% chance of getting it back. For a 3% chance, it was not worth it to me to brave the side effects.

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Maybe you could share this information on a new thread about oncotype testing. Maybe this current thread about using oncotype to decide on treatment could be expanded with all of this information.
https://connect.mayoclinic.org/discussion/oncotype-result/?pg=2#chv4-comment-stream-header
Have you taken Ibrance and letrozole combo or another combo for metastatic breast cancer? What challenges have you had from this drug combination?

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@shortie0650

You have to be careful with looking at the percentages and know whether they are telling you the "absolute" percentage or the "relative" percentage. You need to ask that question.
For instance, in my age group, if I do not have radiation there is a 6% chance of me having the cancer return - which means there is a 94% chance it won't! That is the ABSOLUTE percentage. If I have the radiation it reduces the chance of me getting the cancer back to 3%.
Now when the oncologist was telling me about the anastrozole, she said if I took it, it would reduce my chances of getting the cancer back by 50% because if you compare the 6% chance to the 3% chance - that is a 50% reduction, but it is the RELATIVE percentage - in other words, 6% compared to 3%. BUT the absolute value is that without the anti-hormone therapy or radiation I had a 94 % chance of getting it back, and with the therapies, I had a 97% chance of getting it back. For a 3% chance, it was not worth it to me to brave the side effects.

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I work with statistics and have not seen the word 'absolute' used with respect to any cancer risk or expected outcomes in general. Or used for macro statistics at all.. So I think, but am not certain, that you are differentiating between thr industry mean (average) reduction, what you're terming "absolute", versus any one individual's actual likely reduction benefit (what you refer to as relative)?

At any rate, I tried to find data that delineated the mean (the average), the mode and the median for the purported reduction benefit for taking an aromatase inhibitor as those would be more valuable than the mean/average. Since the mean blends a large population of people with vastly different genetics, health profiles, nutrition, access to healthcare choices, etc. And one's own likely benefit can be greater or less.

I've not seen any hard data of recurrence risk rates by age, by cancer tumor profile, though I know that there are some rough estimates. The problem with breast cancer among older women is that there is so little quality data in part because there has historically been little to no real screening for breast cancer among women over 60-65 until relatively recently.

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@auntieoakley

Maybe you could share this information on a new thread about oncotype testing. Maybe this current thread about using oncotype to decide on treatment could be expanded with all of this information.
https://connect.mayoclinic.org/discussion/oncotype-result/?pg=2#chv4-comment-stream-header
Have you taken Ibrance and letrozole combo or another combo for metastatic breast cancer? What challenges have you had from this drug combination?

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Chris, there are a lot of posts about the gene testing, the OncotypeDX being the most frequent one for estrogen-positive breast cancer. And there are misconceptions about it that are still out there, including among doctors according to an article I cited, with URL, on a thread. If a moderator can move those to a separate thread, the information would be in one place for anyone wanting to understand why the test is used and how to interpret the results when it is.

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@callalloo

Chris, there are a lot of posts about the gene testing, the OncotypeDX being the most frequent one for estrogen-positive breast cancer. And there are misconceptions about it that are still out there, including among doctors according to an article I cited, with URL, on a thread. If a moderator can move those to a separate thread, the information would be in one place for anyone wanting to understand why the test is used and how to interpret the results when it is.

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I understand that there are many tests. My point was that the conversation about these tests seems to be repeated in many threads where it really isn’t relevant to the topic of the thread. Maybe you could start a new thread about the available genetic tests, and keep that conversation going there. There are other folks who are taking part in those conversations so it should be relatively lively, as well as making space in other threads for on topic conversation.

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This thread is about Ibrance and Letrozole, which are prescribed for metastatic breast cancer. @shortie0650 do you have stage 4?

There are other threads about the decision to take anti-estrogen drugs, where most posts are stage 1. (I always wish people would try the meds. Forums tend to scare people away from them entirely.)

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@auntieoakley

I understand that there are many tests. My point was that the conversation about these tests seems to be repeated in many threads where it really isn’t relevant to the topic of the thread. Maybe you could start a new thread about the available genetic tests, and keep that conversation going there. There are other folks who are taking part in those conversations so it should be relatively lively, as well as making space in other threads for on topic conversation.

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I don't know the other gene tests so will let someone else give it a try ;-). There is one thread that has Oncotype in the title but seemingly little activity. And others ask new posters on non-Oncotype threads if they've had the test. Et, voila, the Oncotype stuff becomes part of that thread then. But I get your point.

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