Topic: Bottle 'o Tamoxifen

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 26, 2007 04:02PM - edited Nov 15, 2017 02:59PM by moderators

Posted on: Nov 26, 2007 04:02PM - edited Nov 15, 2017 02:59PM by moderators

ashaby wrote:

Dear All, (and Layne are you there?)

Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha

Edited by Mods to add content from the main Breastcancer.org site's section on Tamoxifen in Pill Form (Brand Name: Nolvadex): Benefits, Side Effects and More

Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 2, 0/0 nodes, ER+/PR-, HER2-
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Jun 24, 2021 10:42AM b-a-p wrote:

Thanks Runor ,


As far as I remembered last time, I tolerated it well. It was only 5months, but my hot flashes were low and the only big side effect I had was insomnia. Now I sleep, but I don't feel all that rested. While on chemo, like I said, I was blahhh for the first 2 days, and then mainly fine energy wise. So this is kinda crummy. It's very triggering since I was feeling this way prior to recurrence so it always makes me a little more anxious . ugh

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy; Mastectomy (Left); Mastectomy (Right) Radiation Therapy 4/29/2019 Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy 10/1/2021 Ibrance (palbociclib) Dx IDC, Stage IV, metastasized to liver, ER+/PR-, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Hormonal Therapy 10/1/2022 Faslodex (fulvestrant), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 24, 2021 11:19AM trmtab wrote:

My onc wanted me to take 10mg a day, or 70 a week...I started at 1/2 10g pills everyother day, built up to 1/2 a pill everyday, and then added somedays of a full 10mg pill. I stopped at a total of 50mg a week. A full pill M/W/F and 1/2 a pill the other days. I have had this routine for over two years now and it has worked for me and my onc is "okay" with it as all he wanted was 70 and he is getting 50.

Dx 9/2015, DCIS, Left, 1cm, Stage 0, Grade 2, ER+/PR+
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Jun 24, 2021 09:32PM momwriter wrote:

I think I'm enjoying the fantasy that I can go off Tamoxifen because it's been 8 years. But the truth is, for Her2 positive (triple positive), there's no evidence that says 8 years is enough for my pathology. Of course, nothing says 8 years isn't enough time on tamoxifen either, but do I risk it? If I find out the side-effects are tamoxifen related, that information can help me manage them more effectively when I go back on.

It's good hearing how you all are managing tamoxifen in your ways. I will definitely discuss tamoxifen dosage - and maybe see what bloods tests etc she can order to see how my systems are doing. When I was in treatment I was on a study and I got detailed blood tests at every infusion and it was always so informative and interesting and helped me understand the drugs.

BAP I definitely think transitioning onto tamoxifen can make you tired. Let yourself rest! And I get the PTSD. I get PTSD this time of year because it was when I first felt the lump. But I didn't have the appointment until August- because I was going on a big family trip at the end of June/July that I didn't want to miss and didn't want everyone to worry. If I hadn't taken it, and gone in sooner, - cause God knows the whole process took a long time- would I have avoided micromets? Who knows. OF course, I didn't think I had it because it wasn't in my family and I was 47 and not the kind to get breast cancer. Turns out I was wrong.

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/19/2012 Mastectomy; Mastectomy (Left) Surgery 11/5/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary Chemotherapy 12/3/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/22/2013 Herceptin (trastuzumab) Radiation Therapy 5/20/2013 Hormonal Therapy 6/15/2013
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Jun 24, 2021 10:11PM b-a-p wrote:


oh momwriter, sometimes the answers To those questions can never be answered. I ask myself similar questions , and can often shift blame to myself. “What if I pushed them harder for an answer ? What if I didn’t take no for an answer ? “ I was brushed off for two years before demanding a biopsy which led to my diagnosis you see below. I was 30. The ptsd and the frustration are all too real. I try to focus on what is and not what could have been “if only” but I fail at times.

Everything I’m feeling is likely the tamoxifen and I appreciate the input for sure. My last scan was good but had some liver damage from the chemo which is stressful because I found out about it on my own bs my dr. So I have no answers and always worry that something is going on.

Hopefully this is an adjustment period that will taper off eventually.

Dx 8/17/2018, IDC, Left, Stage IV, metastasized to liver, ER+/PR+, HER2- Chemotherapy 9/18/2018 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Surgery 2/26/2019 Mastectomy; Mastectomy (Left); Mastectomy (Right) Radiation Therapy 4/29/2019 Whole breast: Breast, Lymph nodes, Chest wall Targeted Therapy 10/1/2021 Ibrance (palbociclib) Dx IDC, Stage IV, metastasized to liver, ER+/PR-, HER2- Chemotherapy Abraxane (albumin-bound or nab-paclitaxel) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Hormonal Therapy 10/1/2022 Faslodex (fulvestrant), Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 24, 2021 10:55PM momwriter wrote:

BAP- Yeah, in my daily life, I generally don't wallow in that PTSD area, or in what could have been, or even in my tamoxifen woes-- I approach my side effects more like a ninja warrior- solving one at a time and they really are generally minor and manageable. But it is so nice to have a place on line to acknowledge those feelings and to pose questions and to share fears when going through a scary scan etc. Thanks for sharing.

Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/19/2012 Mastectomy; Mastectomy (Left) Surgery 11/5/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary Chemotherapy 12/3/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/22/2013 Herceptin (trastuzumab) Radiation Therapy 5/20/2013 Hormonal Therapy 6/15/2013
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Jul 17, 2021 01:17PM momwriter wrote:

Update-

Met with my MO. I have completed 8 years of tam and am on a break for the summer.

She said I have the choice to go on nothing, start an AI,or go back on Tam. She looked back on my pathology which was pretty nasty though she is also optimistic. She recommended against prophylactic MX on my good side. But I'm not convinced.

So "we" decided I would start an AI, Aromasin (exemestane) in September, and if it isn't bad, I will take it for 2 years.I need to do more research and find if the "side effects" like bone density loss are reversible or preventable by something other than drugs with other bad side effects.

One interesting thing of note: She said Dr. Paul Goss (MGH, DF) has been doing some type of studies of alternative dosages of HT-- taking breaks, intermittent use, though I don't know if he's published on this.



Dx 9/2012, IDC, Stage IIB, 3 cm, Grade 3, micromets in 3/7 nodes, ER+,PR+,HER+, Affinity trial Surgery 10/19/2012 Mastectomy; Mastectomy (Left) Surgery 11/5/2012 Lymph node removal; Lymph node removal (Left): Underarm/Axillary Chemotherapy 12/3/2012 Adriamycin (doxorubicin), Taxol (paclitaxel) Targeted Therapy 1/22/2013 Herceptin (trastuzumab) Radiation Therapy 5/20/2013 Hormonal Therapy 6/15/2013
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Sep 4, 2021 08:26PM Teach5 wrote:

I have been on tamoxifen for almost 3 years and have a few side effects but the one that drives me crazy is my dry eyes! Does anyone else have this side effect and if so, what do you take for it?

Thank you so much for any help!

Take care

Dana

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Sep 4, 2021 09:50PM pi-xi wrote:

Teach5, oh, I have DRY eyes! I heat them every night using an eye mask for ten minutes (should do it twice) and use Hylo Gel (drops) several times a day. I find it to be super expensive but it offers relief.

Oncotype 12 Dx 4/7/2016, DCIS, Left, 2cm, Stage 0, Grade 1, ER+/PR+ Surgery 7/11/2016 Mastectomy; Mastectomy (Left); Prophylactic mastectomy; Prophylactic mastectomy (Right); Reconstruction (Left): Silicone implant; Reconstruction (Right): Silicone implant Dx 8/3/2016, DCIS/IDC/IDC: Papillary, Left, 1cm, Grade 2, ER+/PR+, HER2- Hormonal Therapy 9/1/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 7, 2021 08:48PM runor wrote:

By dry eyes, do you mean that when you're outside, no matter what the weather is, they just run and run and run? I have that. Which doesn't sound very dry. Quite the opposite. But my eyes water and water and I can't see what I'm doing because my vision is obscured by tears. Is that dry eye? Or maybe leaky eye? If it's dry eye, oh yeah, got it bad!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 7/5/2017 Whole breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Oct 18, 2021 04:12AM Manal42 wrote:

Thank you for this wonderful thread ...my sister had breast cancer diagnosis couple of years ago ,she is her2 positive too ,from what i have learned her2 positive mostly reccur few yrs after diagnosis , so i believe you shouldn't worry about her2 positivity by now ....my sister is on tamoxifen i would like to benefit from your experience with the drug what time do you usually take it and is it with or without food ....bless u

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