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.

Personally, for me Letrozole was not good. I was on this drug alone for about 1.5 yrs and it give me terrible joint pain and very dry everything - took about 6-8 months before things leveled out - and then after about 1 yr, the arthritis in my hands went crazy, causing trigger finger in most fingers and have since had surgery on both hands. i ended up stopping Letrozole against drs orders as i felt so bad. While my 'risk level' is low, its not zero so i am taking a chance and I worry every day of my decision. If my risk level was high, i would have continued because what other choice do we have?

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Profile picture for sunflower3100 @sunflower3100

Having MBC moves you into a new tribe...This tribe does not have to be physically monitored. Your disease is considered wide spread and you doctor will monitor tumor response with blood tests and scans. If you feel growth or see something that make you feel suspicious that the cancer is responding negatively to treatment tell him you would like him to check...otherwise don't feel like you are not being monitored...you are...you are just in a new tribe and your cancer is monitored differently. We are the warriors not just the survivors.

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Thank you @sunflower3100! I appreciate your response. In the meantime, I asked my oncologist if I could get an ultrasound to check if my original tumor has shrunk or not -in the hopes of getting some good news- and she said no. Then I received a call from the hospital to schedule for a mammogram, and I said no.
In another thread, a lady wrote about meeting people with MBC who lived 5-20 years. Off I go to find it...

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Profile picture for eku @eku

I have MBC and I'm on verzenio and anastrozole. My Dr doesn't check for the size of my breast tumor. Is it common with MBC folks? Should I request that?

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Having MBC moves you into a new tribe...This tribe does not have to be physically monitored. Your disease is considered wide spread and you doctor will monitor tumor response with blood tests and scans. If you feel growth or see something that make you feel suspicious that the cancer is responding negatively to treatment tell him you would like him to check...otherwise don't feel like you are not being monitored...you are...you are just in a new tribe and your cancer is monitored differently. We are the warriors not just the survivors.

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Profile picture for joiful @joiful

Not sure where I fit into this. I am 79 years old. In April, I was diagnosed with IDC in my right breast and ILC in my left breast. Had bilateral lumpectomies in early July. As well as capsulectomies and reconstruction at the same time. Yesterday I completed the last of five consecutive radiation treatments. My oncologist suggested I start Letrozole Nov 1, allowing my body some healing time. I begin a PT regime next week, with the hope that additional exercise will offset the possible tiredness and bone loss side effects, as well as possible depression. I think the positives of Letrozole (keeping cancer at bay and keeping me alive!!) will/do outweigh the possible side effects. I usually walk 2.5 - 5 miles a day, most days. Strength training will aid this - I hope! Does anyone have experience with Letrozole that they're willing to share?

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I’m 72 now, breast cancer at 26, MBC at 60, and was on Letrozole for 10 years keeping cancer at bay. I asked to “Take a break” as the neuropathy and bone pain was really getting to me.
A scan 3 months later showed that the localized tumor in my sternum had spread to my liver — oncologist put me right back on Letrozole. A full PET scan done a month later showed metastasis to spine and ribs.
So, off the Letrozole and now on Ibrance pills and and Fasodex and Xgeva infusions once a month.
It was tough getting started: the neuropathy came back with a vengeance and every other side effect at least once. But my energy is coming back, I walk at least 2 miles a day. I’m dealing with the neuropathy using better daily foot care and a good pair of flexible sole shoes and good fitting orthotics.
I was also put on Gabapentin ramping up to a higher dose, not sure yet if it’s doing any good for the feet
I was glad to hear from other 70+ gals. We’re all different but our struggles unite us and there are a myriad new effective treatments with fewer side affects.
Carry On!

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Profile picture for patclem @patclem

Sorry about your diagnosis. Prayers for you. My diagnosis was HER2 breast cancer. Underwent chemo, after about 6 weeks underwent lumpectomy, then after about 3-4 weeks started on IV infusion of medication to keep cancer from recurring. Unfortunately, I had to quit the treatment due to extreme neuropathy. Now they want me start Letrozole, which I have yet to start taking due to side effects. Still on the fence about it.

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Not everyone has side effects. I’m in month 8 of Anastrozole, was afraid of side effects too. I have no obvious side effects beyond mild joint discomfort which immediately resolved with stretching and exercise. It’s a daily pill so it can be stopped at any time if side effects are too difficult.

There are unseen side effects, like potential hyperlipidemia and or mineral bone density loss but again, not everyone has that. I am using mitigating strategies to reduce opportunities for bone loss.

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Sorry about your diagnosis. Prayers for you. My diagnosis was HER2 breast cancer. Underwent chemo, after about 6 weeks underwent lumpectomy, then after about 3-4 weeks started on IV infusion of medication to keep cancer from recurring. Unfortunately, I had to quit the treatment due to extreme neuropathy. Now they want me start Letrozole, which I have yet to start taking due to side effects. Still on the fence about it.

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Profile picture for susie53 @susie53

I am on letrozole and iBrance for mbc as well. I also was diagnosed with mbc with right breast and lining of my lung. I have been on this drug therapy since mid October. My first set of scans after a month show a reduction by half of my breast tumour and the fluid in my pleural has reduced by half. There are some side effects like fatigue and joint aches but I am happy with thereabouts so far. I take calcium and vitamin D supplements . I also had a problem with and count and my oncologist lowered my dosage of iBrance to 100

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I have MBC and I'm on verzenio and anastrozole. My Dr doesn't check for the size of my breast tumor. Is it common with MBC folks? Should I request that?

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I am on letrozole and iBrance for mbc as well. I also was diagnosed with mbc with right breast and lining of my lung. I have been on this drug therapy since mid October. My first set of scans after a month show a reduction by half of my breast tumour and the fluid in my pleural has reduced by half. There are some side effects like fatigue and joint aches but I am happy with thereabouts so far. I take calcium and vitamin D supplements . I also had a problem with and count and my oncologist lowered my dosage of iBrance to 100

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Profile picture for callalloo @callalloo

I included the link so that people can read the whole article and am glad that you did. In a few places the author noted where the results of both drugs v. letrozole and a placebo or letrozole alone "were not statistically significant." I assume that it is that, that points to a lack of clear benefit that led to the headline conclusion.

The authors cited the problem of missing data as you noted. But statistically-valid conclusions cannot be drawn by ignoring missing data in such a study. That would be cherry-picking data or biased outcome.

So they mentioned what they could deduce (which you excerpted) from the incomplete data but nonerheless concluded as stated in the headline. At least that's what I deduce from the seeming discrepancies.

It would be valuable to know the cause of the missing data. E.g., if people dropped out if the study and why. And why it was the missing data was "disproportionate"? One reason people drop our of studies is adverse effects. In such a case, had the people stayed in the study, several of the measure variables would have been negatively affected.

But here's one conclusion from the study and the link again for anyone interested.
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“Overall survival was numerically longer in the palbociclib-plus-letrozole arm, but the results were not statistically significant,” Dr. Finn announced. “The interpretation of overall survival is limited by the large and disproportionate percentage of patients with missing survival data [ie, lost to follow-up or censored] between the treatment arms.”
https://ascopost.com/news/july-2022/no-overall-survival-benefit-reported-with-palbociclibletrozole-in-advanced-breast-cancer/

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I assumed that anyone who reads this particular article also watches the video which puts the conclusion in perspective and restates the benefits of CDK4/6 drugs by multiple measures. And also read the analysis by another doctor, below the article, that critiques the article's conclusion and explains seeming contradictions.

I have reconsidered posting these articles for a few reasons, but the primary one is that anyone else interested in what the American Society of Clinical Oncologists thinks are important developments in the evolving field of cancer research can find these articles on the ASCO Post website for herself. And subscribe to the (free) daily news updates.

Here's the ASCO website:
http://www.ascopost.com

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Profile picture for deluga @deluga

Unfortunately mine is very negative. I'm 81 is pretty good shape (walking and strength training) but I do have peripheral neuropathy in my legs and was scheduled to start radiation in 2 1/2 weeks. Two weeks ago I started Letrozole (took only 2/3 of a pill) and quit after 3 days. Besides an upflair of my neuropathy which was being perfectly controlled, horrible pain in earlobes of all places, pain in jaw, some joint pain which was bearable, but numbness in neck, which has now spread to lips and checks.

But a friend had no side effects. It's very individual.

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Some commenters on these threads have had a good experience by trying a different aromatase inhibitor, or different generics or the brand-name of the drug. It's worth trying a few of these alternatives in case they don't yield the same side effects and I hope you consider doing so. You would still have the option of discontinuing the drug but the peace of mind that you didn't leave a possibly viable option untried.

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