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Topic: Has anyone quit or reduced dosage of the hormonal therapy?

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Jul 21, 2019 11:02AM - edited Jul 21, 2019 11:03AM by sumomo

sumomo wrote:

I am considering to quit, after taking Tamoxifen for a year, Letrozole for three months, then Exemestane for a month. Side effects, especially joint pains and fatigue, get worse and worse and have come to the point to make me think if I should quit. Or, would there be any option of reducing dosage, like taking every other day?

If anyone has been through the same situation, I would appreciate any comment. Thank you!

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Posts 211 - 220 (220 total)

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Oct 16, 2020 01:59PM KCKCKT5 wrote:

I know this isn't a hormone question, but is there screening anyone of your ONCOLOGIST doing? Scan's or Blood work etc...

Thanks~

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Oct 16, 2020 02:08PM Whatjusthappened wrote:

KCKCKT5, mine only does routine blood work, such as blood count, metabolic profile, lipid profile, etc. Also bone density scans. He only orders other tests if there is a concern or complaint.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Oct 16, 2020 02:39PM Beesie wrote:

KCK,

Read here:

Topic: Standard care post-treatment https://community.breastcancer.org/forum/72/topics/877612?page=1#post_5590109
“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 16, 2020 05:23PM BlueGirlRedState wrote:

KCKCKT5 - when I was only doing hormonal therapy it seems like there was no screening of any kind, and I always felt frustrated. Just very cursory exams. I was told imaging posed a risk of radiation, and there are no blood tests for cancer screening. 15 months ago I went into urgent care with a very swollen arm, opposite side from where sentinal nodes removed, initial thoughts were clotting. No clot found, referred back to oncologist. Afger a couple of horrible months of scans and biopsies, DX came back as a new tumor in R-axilla. With Ibrance blood checks every month to make sure I am tolerating it. CT scans every 3-4 months to evaluate effectiveness of Ibrance. This is the 3rd BC for me.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

6/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.

8/2019 CT, Breast/chest, neck/thyroid ultra sound

9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for) Taking Ibrance and Arimidex


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Oct 16, 2020 06:01PM Whatjusthappened wrote:

BlueGirlRedState, was your cancer in the opposite axilla thought to be a recurrence or a new primary?

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Oct 17, 2020 05:10PM BlueGirlRedState wrote:

WhatJust Happened - Oncologist thought each cancer was a new cancer rather than a recurrence. But I have my doubts.

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Oct 18, 2020 08:29AM Whatjusthappened wrote:

BlueGirlRedState, thank you for posting your experience. I always find it incredible when someone gets a new BC after a MX, especially on the contralateral side. A recurrence I can see because of the change of lymphatic drainage after surgery and/or radiation.

The reason I have a heightened interest in this right now is that I just had an ultrasound of a lump in my left axilla, which is the opposite side of my BC. I'm still waiting to hear those results.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)
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Oct 19, 2020 10:37AM BlueGirlRedState wrote:

Several of us have posted that we are on lower doses than 125 mg, usually because of low blood counts, other SEs, just not tolerating it. I have seen similar comments on AI and Tamoxifen. Have DRs discussed how well lower doses are tracked? If I interpret this abstract on Ibrance correctly, it sounds as if lower dose (at least during the initial cycles) is associated a shorter progression-free time. Any thoughts? I will post this link on Ibrance site, since several have commented that they are on lower doses than the standard 125 mg. Recently my DR also lowered my dose saying that studies showed there was no difference in 125 mg vs 100 mg.

https://www.practiceupdate.com/c/104218/67/13/?els...

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Oct 19, 2020 10:40AM BlueGirlRedState wrote:

WhatJustHappened - my thoughts are with you, and hoping the lump is not cancer.

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Oct 20, 2020 09:49PM Whatjusthappened wrote:

Thank you BlueGirlRedState. I'm now waiting on the office to schedule a biopsy. I'd forgotten how much this waiting sucks.

BRCA2 positive; multifocal LCIS/ILC found after sugery Dx 2/1/2019, LCIS/ILC, Right, 4cm, Stage IB, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/22/2019 Mastectomy: Right; Prophylactic mastectomy: Left Radiation Therapy 4/23/2019 External: Lymph nodes, Chest wall Surgery 6/17/2019 Prophylactic ovary removal Surgery Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy Arimidex (anastrozole)

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