Topic: "Roll Call" for those who've stopped Hormonal Therapy early

Forum: Hormonal Therapy - Before, During, and After — This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Nov 4, 2022 10:32PM - edited Nov 16, 2022 07:21AM by oldladyblue

Posted on: Nov 4, 2022 10:32PM - edited Nov 16, 2022 07:21AM by oldladyblue

oldladyblue wrote:

If you quit or reduced hormone therapy and don't mind sharing future status at least once a year, could you share concisely current cancer status (no evidence of disease, metastisis, new breast cancer) or other health facts? This will give an easy to follow thread of results of quitting. It is such a gut wrenching decision to quit. I am haunted by it still. What do you think? Would you sign up?

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Nov 10, 2022 01:38PM - edited Nov 10, 2022 01:57PM by onehumpedcamel

I did full five years of Tamoxifen, then started on Letrozole. After six months, my hand joints started to be painful and stiff, then feet, then knees. Had to wait a fewmonths to see the oncologist. He took me off, and I am no longer on any cancer medication, since two months ago. Joints are as bad as ever, but at least not getting worse anymore. Been NED since before Tamoxifen

Dx 11/2015, DCIS/IDC, Right, 1cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 11/2015, DCIS/IDC/IDC: Cribriform, Right, <1cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 12/16/2015 Lymph node removal; Mastectomy; Mastectomy (Right) Hormonal Therapy 7/24/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 10/1/2021 Femara (letrozole) Chemotherapy AC + T (Taxol)
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Nov 10, 2022 07:02PM abigailj wrote:

62 at diagnosis, IDC in one breast and ILC in the other…had BMX with immediate DIEP recon June 2020. Oncotype 6 on IDC side and 11 on ILC side. ER+/PR+ HER2- No chemo, no rads. 3 months anastrazole prior to my surgery which was delayed due to COVID. MO said 3% risk with the pills and 6% without. Made decision not to take them after surgery. I guess time will tell.

Dx 1/2020, ILC/IDC, Both breasts, 2cm, Stage IB, ER+/PR+, HER2- Surgery 6/23/2020 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left): DIEP flap, SIEA flap; Reconstruction (Right): DIEP flap, SIEA flap Surgery 6/23/2020 Mastectomy (Left): Nipple Sparing, Skin Sparing; Mastectomy (Right): Nipple Sparing, Skin Sparing; Reconstruction (Left): DIEP flap; Reconstruction (Right): DIEP flap
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Nov 10, 2022 09:47PM inthesage2 wrote:

Molliefish, someone can correct me if I'm wrong, but the whole game of taking these hormone drugs and/or chemo has more to do with distant recurrence, not breast recurrence specifically. I believe I read that Tamoxifen is supposed to also prevent breast recurrence about 40%, but the actual 3% gain overall that is quoted has to do with distant.

Surgery 10/1/2021 Lumpectomy (Left) Radiation Therapy 11/1/2021 Whole breast: Left breast Chemotherapy 1/14/2022 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 26, 2022 02:29AM oldladyblue wrote:

Hi Inthesage2, would you mind posting your status concisely and coming back yearly to share your check up results? I wanted a "small post" thread of "statistics" from women who didn't mind sharing future status to keep things "scrollable" as the thread hopefully grew. In my own case, even when pressed, my doctors couldn't give me their exact prediction statistics, just that I "had" to take AIs to be safe. I'm going to PM you if that's OK.

Surgery 7/1/2021 Lumpectomy (Left); Lymph node removal (Left): Sentinel Chemotherapy 10/8/2021 Other Radiation Therapy 1/4/2022 Whole breast: Left breast, Lymph nodes Hormonal Therapy 3/10/2022 Arimidex (anastrozole) Dx IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2-
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Nov 26, 2022 09:00PM buzzbomb wrote:

quick but exciting update. I stopped tamoxifen a little over five weeks ago after a frightening rise in blood glucose despite a very low carb diet. Research showed that womaen over 65 have a 20% increase in rates of type two diabetes. now, five weeks on, and daily glucose monitoring I am thrilled to see my numbers back to where they were….

I have worked very hard at this, going carb free (not an easy feat) and limiting my eating window. Next week I may try adding some carbs back…

I am so excited by these numbers. The side effects of diabetes are no joke

Dx 12/5/2021, translation missing: en.models.diagnosis.shorthand.type.i/translation missing: en.models.diagnosis.shorthand.type.d/translation missing: en.models.diagnosis.shorthand.type.c/IDC/DCIS, Left, Stage 0, Grade 2, ER+/PR+, HER2- Surgery 3/9/2022 Lumpectomy; Lumpectomy (Left) Dx DCIS/IDC, Left, <1, Stage 0, ER+/PR+, HER2- Radiation Therapy
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Nov 29, 2022 09:40PM inthesage2 wrote:

I just talked with one of my oncologists, the one who specializes in breast cancer. Since I cannot take tamoxifen and do not want to take AIs (and had an ocotype of 33) he recommended I do Faslodex or I could do Evista. I have to speak with my primary oncologist about this since Faslodex is a monthly injectable and usually given to women with metastatic breast cancer. It's all frightening really in terms of side effects. I see an ND oncologist next week for another opinion.

Surgery 10/1/2021 Lumpectomy (Left) Radiation Therapy 11/1/2021 Whole breast: Left breast Chemotherapy 1/14/2022 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 10/1/2022 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 15, 2022 02:40AM dclancy64 wrote:

This is a great topic. I was at my 1 yr out visit with MO on Monday, and told him that I had stopped taking Arimidex after a couple of months due to unremitting hot flashes and hip pain. Side note, I had a severe allergic reaction after my first injection of Zoladex, which really made me wary of all hormonal drugs. I tried tamoxifen and it made me feel like jumping off a bridge into the Mississippi River. At 57, I was still premenopausal so needed to be put in menopause STAT. I ended up having an oophorectomy. Anyhoo…The doc pulled his mask off of his face (first time seeing him without the mask) and very seriously said “You HAVE to take an AI! You're at a very high risk of stage 4 recurrence due to your lymph node involvement." I had 2/4 positive nodes with macro metastasis and chose to not do radiation. I didn't need chemo, Oncotype DX score of 4. He told me that Aromasin was more tolerable, but I'm not convinced, and haven't taken a dose yet. Here's my rationale: I work as a nurse in long term care, so I have the privilege of caring for those in their sunset years, and I have decided that quality of life is far more important quantity. I don't judge anyone on this horrible journey of navigating breast cancer treatment but I know that my decision for now is no meds.

Hormonal Therapy 12/3/2021 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/17/2022 Mastectomy (Left): Simple; Mastectomy (Right): Simple; Prophylactic mastectomy (Right) Surgery 1/17/2022 Mastectomy (Left): Simple; Prophylactic mastectomy (Right) Dx ILC, Left, 4cm, Stage IIB, Grade 2, 2/4 nodes, ER+/PR+, HER2-
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Dec 18, 2022 12:49AM - edited Jan 9, 2023 03:12PM by gigil

One thought I have, as I decided not to take an AI after my initial diagnosis 12 years ago - I was diagnosed stage IV mets to the bone two years ago. I was then forced to take an AI. I have taken Letrozole for two years with minimal side effects. It has recently stopped working and I am now taking Faslodex shots and Ibrance. So far side effects have not been bad. They are certainly less than symptoms of bone metsthroughout my body. My oncotype is 30. I now wonder if had I taken the AI 12 years ago, would I have mets today? My lymph nodes were clear at the time of my lumpectomy.

Dx 5/6/2011, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Targeted Therapy 12/10/2022 Ibrance (palbociclib)
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Dec 18, 2022 10:22AM maggie15 wrote:

Hi Gigil, Did you have chemo? I'm glad the Faslodex and Ibrance are tolerable.

DX 2/15/2021, IDC, Right, 3 cm, stage 2A, ER+/PR+, HER2-
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Dec 18, 2022 05:07PM gailmary wrote:

hi Gigil. Your story is a bit like mine. At 52 dx with IDC with tiny micromets in 2 nodes not requiring chemo. After Radiation was Tamoxifen but depression and leg cramps after 9 months I switched to letrazole. 3 yrs later I stopped it due to fibromyalgia type pain.

Oops. Fast forward to 60 yrs old and my arm was nearly paralyzed with pain from a bone met. Radiation followed with drugs, drugs, drugs and drugs. Ibrance, xgeva and letrezole again with faslodex. All at same time! Pretty tolerable. Onc only wanted me on ibrance 1 yr. Then after 2 yrs I wanted to drop letrezole thinking it was causing insomnia but no pains. Then jaw pain put a halt to xgeva. Still on faslodex with the same 1 stable bone met. 6 yrs now.

What I realized tho is that it's not so much a side effect of the meds leading to side effects. It's actually a lack of estrogen the desired effect. I'm highly ER+. That is what will stop the cancer.

No estrogen is a bit the same as when you approach menopause. Look up perimenopause if your not there yet. It can be nasty. I was told they can treat most any side effect but it's necessary. I suppose i have a new normal taking a few more drugs than I'd like but I feel pretty good. For aches and pains now I would take tumeric/Curamin.

I don't kid myself. If t took the letrezole that 1 extra year, it still would have returned and my chances were like a score of 12.

Gailmary

Dx 11/25/2008, IDC, Left, 2cm, Stage IIA, Grade 1, 2/12 nodes, ER+/PR+, HER2- Dx 4/13/2017, Stage IV, metastasized to bone Radiation Therapy 5/24/2017 Hormonal Therapy Faslodex (fulvestrant), Femara (letrozole)

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