Topic: Pros and Cons of Tamoxifen

Forum: "Middle Age" 40-60(ish) Years Old With Breast Cancer — Meet others in this age-range who share similar life issues.

Posted on: Dec 28, 2017 11:51AM

Posted on: Dec 28, 2017 11:51AM

llwilson wrote:

I have read and read and read and would love to get someone's opinion on not taking to TAmoxifen. I'm 56, ER+, but my OncaType is 9 and I have just finished my radiation and feel great! I was low risk to begin with and the cancer was very contained. The side effects of Tamoxifen are absolutely terrifying for me. After finally surviving, being happy again, why would I torture my body to lower the risk of reoccurrence. I read someone say they'd rather lose their breasts than their hair. I feel like I finally have my life again, I can start getting the weight off and hiking again. All the possible side effects sounds like it will make life much worse. Looking for someone that is similar age group.

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Dec 29, 2017 08:07PM edwards750 wrote:

It’s an individual decision to take or not. I did take Tamoxifen for 5 years. Oncotype score was 11. I am 6 years out. So far no cognitive decline. I was unwilling to play Russian Roulette even with the side effects. Frankly I was scared not to. Having said I didn’t suffer with some of the side effects others have.

Joint pain, difficulty concentrating sometimes and sleeplessness were the only issues I had with the drug.

To each her own. Your body, your life.

Diane

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Dec 30, 2017 04:47PM - edited Dec 30, 2017 06:05PM by BarredOwl

Hi Faithonfire:

Your profile shows Stage IIIC disease. It looks like you received some sort of "neoadjuvant" (pre-surgical) drug therapy regimen that included Tamoxifen (a form of endocrine therapy) and possibly other drug(s). In another post, you mentioned "armadol and tamoxifen." To my knowledge, "Armadol" is not the same as "Anastrozole (Trade Name ARIMIDEX)." Please ask your doctor.

Note that the test described above (OncotypeDX for invasive disease) is not recommended for use in patients with Stage IIIC disease, because it has only been validated in patients with earlier stages of breast cancer.

In addition, the graph and related studies that I linked to above did not include any patients with Stage IIIC disease (and none of the patients received neoadjuvant therapy), so the results do not apply to your particular situation.

There are other studies of various drug treatments that would have included patients with Stage IIIC disease and that inform current understanding of the potential risk reduction benefit of various systemic drugs treatments in such patients. If after surgery, your Medical Oncologist recommends continuing endocrine therapy in your case, you should not hesitate to request information about the potential "absolute benefit" of the specific drug regimen in your case (after all other treatments), and the incidence of severe side effects with that regimen, to better understand your risk/benefit profile from such treatment.

Note that if a person has had both ovaries removed (e.g., by bilateral oophorectomy or by bilateral-salpingo oophorectomy (removal of both ovaries and the Fallopian tubes)), then they are considered to be "post-menopausal" under NCCN guidelines for the purpose of endocrine therapy, and formally have the option of using a regimen containing an aromatase inhibitor.

Best,

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Dec 31, 2017 03:37AM Faithonfire wrote:

Dear Barred,

The initial paperwork I have for my first batch of treatments listed it as armadex and it was all pre surgery treatment so far. My tumors were hard to find and the stage 3c paperwork must have been before last 2 biopsies on my right came back and they weren't official tumors on the right breast yet so those results didn't change treatment choice but did amend it to stage 3 a with pre cancer clusters indicating same need for double mastectomy once my genetics report showed I was a braca 2 with unidentified mutation.

I have 2 cousins one slightly younger the other just over 50 currently in chemotherapy for breast cancer awaiting their results from free genetic tests now. Several other members of our family have had breast cancer in the past 5 years and the genetic tests were not covered by insurance at that time.

it was a strange Christmas gift but seeing the insurance company eat crow to get them was priceless to all of us for generations yet to come finally!

We all have lots to learn about what we are going through and the ovary issue is one of our biggest concerns on both sides of the fertility issue so thank you for sharing your information!

Hormone therapy is a hot topic for our family too and the information we are finding on the subject is making our choices easier to debate until it's time to start.

I have surgery January 9 and will find out if radiation is needed or if I had a complete response as indicated.

Best of luck to everyone for the new year

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Dec 31, 2017 02:57PM - edited Dec 31, 2017 02:57PM by BarredOwl

Hi Faithonfire:

Sending my wishes to you for smooth sailing in your upcoming surgery and for the best possible pathology results.

🍀

BarredOwl

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
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Jan 1, 2018 08:26PM beach2beach wrote:

Im 51, taking Tamoxifen, 4months now. I switched to taking it in the evening. I know some who split the dose. Side effects for me are incredible dryness in my sinuses and my lips and some dizziness. So far very doable for me. Good luck with the surgery

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy; Mastectomy (Left); Mastectomy (Right); Reconstruction (Left); Reconstruction (Right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 4, 2018 12:50AM ML1209 wrote:

Faithonfire- My MO told me to take Claritin on days 1 thru 5 to help with the bone pain. I was already taking it daily for allergies, so just continued to do so. No pain whatsover with the Neulasta. I don't believe it is a rumor. One of my nures said that their Neulasta drug rep actually told them to tell all patients to do this. Very thankful it worked!

Diagnosed age 48, Oncotype 35 Dx 11/2016, IDC, Right, 2cm, Grade 3, 0/4 nodes, ER+/PR+, HER2- Chemotherapy 12/29/2016 Surgery 5/23/2017 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 7/10/2017 Whole breast: Breast Chemotherapy AC + T (Taxotere) Hormonal Therapy Arimidex (anastrozole)
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Jan 4, 2018 02:57AM Faithonfire wrote:

Thank you Barred, and everyone

So glad to hear it helped! I was told about it in time for my last 2 neulasta shots and it was a remarkable difference with Claritin in my system.

I'm still loosing weight so I am doing my best to get anything I can eat to stick before surgery but I'm still pretty nervous about having surgery so it's a daily battle for me to stay strong.

I had a very hard time during the holidays because my husband and children would not send me a single pic or respond in any positive way during my treatments. They did not take the news of my diagnosis well at all and won't talk to me after seeing me without hair. I have never been away from any of them this long before and now they blame me for abandoning them. I can't understand it. I just hope time will help them realize why it could not wait one day.

I'm just so dissapointed in my husband I don't know how to handle his reaction. I have done my best and can only heal myself and pray he makes it all up to me. I know I am only fooling myself, but I won't give up

Dx 6/25/2017, IDC, Both breasts, Stage IIIC, ER+, HER2- Chemotherapy 7/14/2017 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide), Doxil (doxorubicin), Methotrexate (Amethopterin, Mexate, Folex), Taxol (paclitaxel), Taxotere (docetaxel) Chemotherapy 9/2/2017 AC + T (Taxol) Surgery 1/9/2018 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 1/9/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left, Right; Reconstruction (left): Nipple reconstruction, Tissue expander placement; Reconstruction (right): Nipple reconstruction, Tissue expander placement
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Jan 5, 2018 05:08AM jaymeb wrote:

Hi Ladies

This is my first time posting to this forum. I'm usually on the Stage 2 sisters one. I had a unilateral mascectomy with 13 lymph nodes removed. One was positive. So, stage 2A with a 1cm tumor. I had an onco score of 14, and my onco said no chemo. I had 28 radiation treatments. I am premenopausal, and have been on tamoxifen for since April 2017. Was diagnosed in Feb 2017. It seems I see so many women with a similar diagnosis that do chemo. Due to my positive lymph node, I thought I would. However my onco said chemo would only help by 2%. So tamoxifen will be my saving grace, and I have not missed one dose, and don't plan on missing at all. My phone goes off everyday at 6:00 to remind me. I hate the hot and cold flashes. Also, my appetite has increased a lot, therefore weight gain. I hate that, but I will take it to lower my chance of distant reoccurance. Has anyone on tamoxifen, or any other hormone therapy gained weight? Is that normal? Did anyone skip chemo with one positive node? Sorry this is such a long post. Isn't breast cancer so much fun? Sighhhh😂😂😂.
Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2-, Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 1/13 nodes, ER+/PR+, HER2-, Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 5, 2018 05:35AM jaymeb wrote:

Faithonfire


I just read your post. Oh my god!!!! I can't believe it. Are you, and your husband under the same roof with the kids? How old are your children? I'm 48, and divorced with a 14 year old daughter. It was hard on her, and in the beginning, she was standoffish. Was not expecting that. She leaned more on her dad than me. As time went on, and the dust settled, I got my daughter back. She just did not know how to handle it. My mother and brother have been my support, and eventually my daughter. Cancer is also so impactful on our loved ones. However, they need to be very supportive of you. Your husband should be taking care of you. As the marriage vows go, in sickness, and in health. My ex husband and I get along very well, and he has been there for me. Have you and your husband communicated, and told him how you feel? I've read on other forums where cancer has split families apart. It astounds me. It just seems something this serious would bring our loved ones closer. I hope you all will work this out. What about counseling? I hope I'm not being offensive, I want things to get better for you, your husband, and your children. Support is so important with what we have all gone through.

Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, ER+/PR+, HER2-, Dx 2/15/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 1/13 nodes, ER+/PR+, HER2-, Surgery 3/29/2017 Lymph node removal: Underarm/Axillary; Mastectomy: Left Hormonal Therapy 4/22/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 7/17/2017 Whole breast: Breast, Lymph nodes, Chest wall
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Jan 5, 2018 07:28AM pupmom wrote:

Jaymed, my stats are almost the same as yours, except I had 2 positive nodes. Oncotype 14 and tumor 1 cm. I had no chemo and am doing fine 6 years later. When the doctors explained the Oncotype Test results, it was obvious I was more likely to die from chemo than without it. That's the amazing thing about this test. We early stagers are spared the SEs of chemo, which wouldn't benefit us anyway, and potentially really harm us. Wanted to add that the tamoxifen hot flashes and weight gain get better after awhile. I rarely have a hot flash anymore, and when I do they are very mild. Nothing like what I experienced at the beginning. Best wishes!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-

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