Thyroid Issues on Ibrance?: I have been... - SHARE Metastatic ...

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Thyroid Issues on Ibrance?

SushiLife profile image
12 Replies

I have been on Ibrance and anastrozle for four years and thank the Lord I am clear. Since the beginning of Ibrance, I have noticed that as the three weeks on nears about week two, my neck/throat begins to be sore. By week three its more definite, but I get relief on week four when I'm off Ibrance. Now, I have developed nodules on my thyroid and onc thinks I may have Hashimoto's or thyroiditis. Biopsy of nodules is clear. Endocronologist suggesting we just remove thyroid and add another few medications - to which I say NO! Anyone else develop any thyroid issues while on Ibrance?

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SushiLife
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12 Replies
Nocillo profile image
Nocillo

I’ve also got nodules on my thyroid, but they haven’t changed size and no apparent effects.

Justme153 profile image
Justme153

From what I was told nodules are very common. Its only a problem if you start showing signs of problems. Like blood work stuff too high or too low can tell a doctor to check specific TSH and other blood tests that arnt usually tested in routine blood work. Did your doctor run these extra blood works ?

Godbeforme profile image
Godbeforme in reply to Justme153

ever since I was diagnosed in 2013, I've been told "numerous nodules on my lungs". then in november of this year, after a petscan, I was told I had a mass on my lungs. a few months later and I developed a cough (probably my cedar allergies) so my gp did an xray and guess what? lungs are clear ... I'm of the opinion that nodules come and go! also, my "lump" was discovered on a routine mammogram 23 years before it became a "tumor" and thought to be harmless. I knew the exact location of it because when you feel a lump in the shower, you never forget the location, no matter how forgetful you are! just my 2 cents! I feel like there's a bit of a "scare them and they'll comply" game played on us. they definitely have a captive audience, bless their hearts! God bless you and Jesus please heal us all, amen!

Justme153 profile image
Justme153 in reply to Godbeforme

Just to be clear i was saying nodules are common in a lot of people on there thyroid. I have no info on nodules on the lungs.

LibraryGeek profile image
LibraryGeek

I had Graves Disease (overactive thyroid) while I was on Ibrance and Letrozole about 4 years ago. The Ibrance was masking the symptoms- I didn’t have weight loss, because this was counteracted by the hormone treatment. My oncologist said that the overactive immunity reaction needed to be suppressed for the Ibrance to work properly. It all corrected itself after a period of thyroid medication and I don’t have to take anything now. I did have nodules on my thyroid as well but the nurse said they had probably been there for a long time. I put loads of weight on once I came off the thyroid meds!

Jackie x

SushiLife profile image
SushiLife in reply to LibraryGeek

Thats a relief to hear your experience! I think the endocrinologist was not that great - just talked about “it’s probably cancer” and “we need to remove the whole thing” even before he got my records of scans and biopsies. I am concerned about another medication so it’s good to know it helped you and you were able to get off of it eventually. ❤️ Prayers and health to you!

LibraryGeek profile image
LibraryGeek in reply to SushiLife

The thyroid medication didn’t cause any problems for me at all. Don’t worry about it x

fancydog profile image
fancydog

Interesting, I'm not yet on Ibrance so I can't speak to that but my 2 cents is don't have your Thyroid removed if at all possible, replacement meds are sooo hard to get right and can have a bad effect on QOL!

viennagirl profile image
viennagirl

I already had Hashimoto's Thyroid disease long before I got mbc. At around age 40 years old I was diagnozed with Hashimoto's. I originally was on Synthroid but got very fuzzy thinking on that medication. I finally talked my doctor into trying me on natural dessicated pig gland thyroid. And the fuzzy thinking cleared up. I take one 60 mg pill per day - usually in the morning. And in the evening after my evening meal I take my Ibrance and Letrozole. I am 80 years old and have been on the Ibrance Letrozole combo for over three years and my scans are clear. I know 80 years of living is a real gift but I still love life and I am very happy and have family I love and so would really love to have many more years. So every time I have a scan I pray for more success. I have had very few side effects from the drugs - mostly thinning hair and numbness in my feet. I think you should just ask your doctor to put you on the natural dessicated thyroid and see how you are doing. Surgery is too drastic in my books. I think it is wise to take your thyroid meds quite a few hours away from your other drugs. I wish you the best success with the thyroid meds. It looks like you are doing well on the cancer meds. Hugs Marlene

SushiLife profile image
SushiLife in reply to viennagirl

A wonderful 80 years! What a happy thing😊😊 thank you for sharing your experience with me and I will talk to my Dr about the natural drug. Hugs and health to you too!

FloridaNYgirl profile image
FloridaNYgirl

I also have Hashimoto's, was diagnosed about 20 years ago. On Synthroid 88mcqs. I take it alone, first thing when I wake up. Take my Letrozole and BP med at least 1/2 hour after that and Ibrance at dinner time. Haven't had any issue/changes in thyroid function or in the nodules that have been present for years. Surgery does seem extreme. Perhaps an adjustment to your meds would work for you. Ask for options. Do you see an Endocrinologist?

SushiLife profile image
SushiLife in reply to FloridaNYgirl

Thanks for sharing your experience. I have seen the endo that remarked how 30-40% of the time nodules are cancerous and we will prob remove your thyroid, which I thought was ridiculous to say that to a cancer patient without even bothering to look at my thyroid biopsy which was clear. Wasn’t impressed, felt like he’s a rubber stamp kind of guy that won’t look at me as a person. I’m looking for a new one. I have had drs that are wonderful and know it’s wise to find those that are willing to listen instead of putting up with the ones who don’t. Glad to know synthroid works well for you abs how you take it.

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