Ibrance and Letrozole: Newly Diagnosed Treatment
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?
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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?
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...
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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4 ReactionsI’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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4 ReactionsNot 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.
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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1 ReactionI 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?
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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1 ReactionI 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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2 ReactionsSome 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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