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 03:02PM - edited Nov 15, 2017 01:59PM by moderators

Posted on: Nov 26, 2007 03:02PM - edited Nov 15, 2017 01:59PM 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 19, 2021 02:03AM runor wrote:

Momwriter, my onc has offered to switch me to an AI and so far I have declined because at least I know the side effects I deal with and don't want different ones. I don't consider bone density loss a side effect, I consider that a medical problem and at least tamoxifen, despite its many miseries, protects against bone density loss. But I thought I was on tamox for 5 years and now the oncologist is making it sound like he's thinking about 10 years......

Which brings me to Princess Buttercup (best name ever! As you wish!). I have decided not to have a hysterectomy, which is a complete turnaround from early April when I was screaming RIP IT OUT, RIP IT ALL OUT!!!!  But it turns out there is nothing wrong with my uterus. Not one, single thing. The gynecologist said there was no medical reason to recommend a hysterectomy. Unlike you, I was not having pain or back ache or on and off bleeding. I had none of that. Just that one time when the flood gates opened and basically a hemorrhage with blood clots occurred. It was like someone opened up the faucet and 16 or so hours later, abruptly shut it off. The bleeding did not drizzle off slowly over a day or two. It stopped. Abruptly and completely. Weirdest damn thing. So the pathology said there was no sign of hyperplasia or anything. I waited for the results of the pap (which took way longer to get back) thinking if there was some weird stuff going on with my cervix cells, then I'd have the whole works taken out. Nope. Cervix normal as ever. 

I talked it over with my regular doc who said I should have a hysterectomy when I need one. When I have a solid reason to have one. If the mental worry is more than I want to deal with, the threat that tamoxifen could give me uterine cancer, then he would say go ahead and take it out. But if the worry is not going to overwhelm me he said I should save that surgery for another day. If I get rid of the unterus and have other problems, I'll be mad. If I keep it and get cancer, I'll be mad. But if onc says he wants to keep me on tamox for another 5 years I might have to reconsider this.

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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Jun 19, 2021 03:12AM veeder14 wrote:

Hi Runor,

Did your ONC tell you why 10 yrs of Tamoxifen might be recommended?What is the criteria they are using? Just wondering if your tumor is being retested or something

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Jun 20, 2021 02:35PM runor wrote:

Veeder, no. Onc said nothing specific. It was very odd. When I was talking to him and said I only had a year and a bit to go before I was done, his response was "yeah, well, maybe, we'll see, we can discuss that at a later date..."  It was the first I had heard any mention that I was heading for more years of hormonals. My Oncotype recurrence risk was based on 5 years of tamoxifen, I believe. My score was 11. I do not believe my tumour is being retested. If it is, no one has said anything to me about it.


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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Jun 21, 2021 03:48AM veeder14 wrote:

Hi Runor,

That’s interesting. I don’t think I even had an oncotype test on my tumor. I’ll have to as

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy; Lumpectomy (Left); Lymph node removal Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Jun 21, 2021 12:01PM princessbuttercup wrote:

Runor, I hear you on not wanting unnecessary surgery. For me the hysterectomy solved a lot of problems, not the least of which were frequent UTIs. So many issues, and my pathology report felt like validation that none of this was all in my head.

I think the important thing is to have doctors who listen and take our concerns seriously.

Also, it seems like many women have been hearing a new plan for tamoxifen and AIs recently. My plan just went from 5 yrs to 10, based on some recent research (according to my MO). Working on adjusting my attitude towards this…

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/5/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/21/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 5/1/2018 Whole breast: Breast Hormonal Therapy 6/11/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 11/1/2021 Aromasin (exemestane) Hormonal Therapy Femara (letrozole)
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Jun 21, 2021 07:20PM runor wrote:

PrincessB, I think if a woman needs this surgery, they need it. All the ladies I spoke to who ended up with problems after the surgery still felt it was well worth it because the problems they had BEFORE were much worse. If I ever feel that the old uterus is going rogue on me, I will yank it. 

Today I am feeling like someone sucked all my energy out. Dragging my ass around here, hardly keep me eyes open. Doesn't help that I can't sleep for more than 12 minutes before a hot flash wakes me up to whip the covers off and, 5 minutes later, pull them back on again. Another 5 years of this? Good god. I know that I will feel vulnerable and at risk when I no longer take tamoxifen. But I also know that month I was off it I felt so much better! Pisses me off! Ever since cancer it's like everything is a bargain. I'll take tamox to not get cancer but the cost is feeling like shit. I'll quit tamox to feel better but the cost is I might get cancer. I'll stay on to keep breast cancer away but ooops, giving myself uterine cancer. Go off to save uterus from cancer and too bad, breast cancer can come back to get you. I want to get OFF the train track as the train barrels down on me but it seems all I can do is wiggle off to one side and lose only a part of me (an arm or a leg, a hand or a foot) but there is no way to get free of this damn ever present threat. Forgive me. I am having a very pouty day today. 

I can see myself taking tamox part time for another 5 years. I can see my onc being unhappy about that. He is already unhappy that I only take 60% of the suggested dose and have since the beginning. It might work for me to take 10 mg twice a week for another 5 years? No one has ever done the studies to see if that might help. I'll be a study! A cohort of one! But man...I really don't want to feel like this another 5 years.

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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Jun 23, 2021 11:48AM b-a-p wrote:

HI Everyone,


I restarted Tamoxifen 3 weeks ago. I was on it 2 years ago for 5 months before being switched to an AI as my ovaries were removed. I had a recurrence and now on a chemo break as all is stable. We've restarted tamoxifen and I'm super tired. I have less energy than when I was on Chemo ( surprisingly). Just wondering if anyone has had the same experience. I get a little nervous because I was super tired right before re-diagnosis which I assumed was met related. I only had a scan 3 weeks ago which was really good so I'm trying to tell myself it's the tamoxifen lol. I'm sleeping decently but I'm just zonked.

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 23, 2021 02:22PM runor wrote:

B-A-P  fatigue is a known side effect. I have had them all. But it seems they come and go in waves. So, what bothers me for a few weeks will eventually ease off to be replaced by some new annoyance until that eases off and something else becomes more annoyingly noticeable. BUt the other thing...when I went through my recent cancer scare in April, I was exhausted. EXHAUSTED! I usually never go to bed before midnight, and if I do climb into bed at midnight Hub asks me what's wrong. But when I was stressed and freaked out and terrified I was utterly worn out by end of day. I would go to bed at 9 and crash like I'd been working hard field labour all day. So I think sometimes mental exhaustion shows up in our bodies. Maybe you held it together to get through what you needed and now that you're in a stable place, now that you can let your guard down a little bit, your body is saying IT'S TIME TO BE TIRED! So...rest. If it's that, then you will be able to sleep it off in a few days and feel better for it. If it's tamoxifen, let's hope it eases off and something else, like hair loss, constipation, stiff joints and weight gain in the middle come along to annoy you. Hang in there!

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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Jun 23, 2021 04:38PM momwriter wrote:

Runor,

I will bring up the part-time/lower dose idea with my MO. I'm thinking even, one year on, one year off, or lower doses. I'm just starting this break after 8 years on Tamoxifen and I feel my body really needs it. I'm so excited although it's only been 5 doses that I've missed so far.

And I agree, hard to know what's the side effect of the drug and other things. That's why I'm anxious for this break. But I don't want to be unprotected. Bad thing about my dx is that there is no definitive literature on effect/duration of tamoxifen or any hormonal therapy on Her2+ . I'm definitely in the higher risk category, with multiple micromets in my lymph nodes (3) and LVI and nasty stuff in my tumor. If I'd have had just 2 micromets I'd be considered lower risk. Very gray area.

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 23, 2021 05:48PM runor wrote:

Momwriter, to be clear my onc never gave me his blessing to take the dosage that I do. In fact his last communication with my regular doc said maybe I should switch to an AI so that I would 'take the full recommended dose".  Pffft, yeah right. 

Even at 60% of the regular weekly dose, I have had all the side effects. Up to and including an epic event of bleeding after 4 years of no periods. While the pathology said this behaviour is in keeping with the 'known effects of tamoxifen'... there seems to be no actual changes in my uterus. So, this report is, as you have said, kind of a gray area. No one really knows why my uterus decided to turn itself inside out and bleed like mad. But now it seems fine. Go figure.

Do not expect your onc's blessing. If your onc is honest he/she will say that the best, lowest dose was NEVER studied, because it wasn't. We take 20mg because it was the dose most women could tolerate, NOT because it was an effective dose. Tamoxifen still has a very high non-compliance rate. It comes with a serious set of often miserable effects. Women quit taking it. You'd think they'd figure out how much people need to be protected. But no. No profit in that research so it will never be done. 

I hope you feel better on your break. It took me a while to realize that I sure did! No more waking up at night to pee! No leg cramps! No groaning and creaking when I got up off the sofa. But beware.... it makes going back on all that much harder. I really, REALLY stared at that pill a long time, feeling cornered and mad at the decisions I was faced with, before I swallowed the damn thing.

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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