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 02:02PM - edited Nov 15, 2017 12:59PM by moderators

Posted on: Nov 26, 2007 02:02PM - edited Nov 15, 2017 12:59PM 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-
Log in to post a reply

Page 3069 of 3,071 (30,705 results)

Log in to post a reply

Oct 20, 2021 12:10PM KateHanni wrote:

I just picked up two things from onco/pharma. One bottle of Tamoxifen and one bottle of letrozole. I'm so fatigued and out of sorts right now I'm not going to trial either one until I can lower my blood pressure and the swelling in my legs which is freakishly swollen. I feel like I can't catch a break. Anyone have any thoughts?

The fatigue I'm feeling is the same fatigue I felt before my lumpectomy. I hope this is just something unrelated to cancer but this is a weird feeling fatigue and I'm concerned that it might mean there is cancer somewhere else in my body.


Dx 1/25/2021, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2-, Radiation Therapy 4/18/2021 Radiation Therapy 4/18/2021 Multi-catheter: Breast Hormonal Therapy 5/30/2021 Arimidex (anastrozole), Aromasin (exemestane) Surgery
Log in to post a reply

Oct 20, 2021 01:00PM pamep wrote:

I started tamoxifen last week. I am easing into it trying to determine side effects and best way and time to take it. My MO agreed to let me take 10mg rather than 20mg, given my physical size, my cancer's specifics, and my reluctance due to the very serious side effects this drug can have albeit low percentage. (oh those BC percentages...) I chose tamoxifen over the AI's because of the AI's negative effects on bone density and brain and heart health.

Side effects showed up the third day as nausea, headache, and brain fog. So far I have found that taking the pill with food in the late afternoon or early evening is best for me. That reduced the nausea and lessens the drug's affect on my daily activities. Doctors say side effects decrease with time, and at this dose I am finding them bearable at this early point.

It seems to be treatment by trial and error by individual under an MO's guidance. If this drug doesn't work for me, I will try one or more of the AI's and go from there.

KateHanni: I think we all worry about cancer in the body since there is no cure. We just have to try our best and advocate for our care.

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast Hormonal Therapy 3/1/2022 Arimidex (anastrozole) Hormonal Therapy 3/1/2022 Arimidex (anastrozole)
Log in to post a reply

Oct 20, 2021 03:15PM daughterofbarb wrote:

PamEP, Like you, I was very hesitant to start tamoxifen and my MO fully supported my suggestion of a lower dose. I’ve been on 5 mg daily, every morning for about three and a half weeks now. Can’t be certain because they are so mild, but the only SE so far are possibly some night sweats (though I’ve always been a warm sleeper) and brain fog (buthard to say it’s from the tamoxifen given this new reality I’m dealing with). Trying to work up the courage to increase to 10 mg daily, which I’ll split into two doses. Have you asked your MO about splitting your dose?

Dx @ 46, Oncotype DX Score = 7, Nipple Sparing Double Mx, Tamox @ 5mg daily Surgery 7/15/2021 Lymph node removal (Right); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Left) Surgery 8/1/2021 Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Hormonal Therapy 9/1/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/16/2021 Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Surgery 4/25/2022 Reconstruction (Left): Fat grafting, Silicone implant, Silicone textured implant; Reconstruction (Right): Fat grafting, Silicone implant, Silicone textured implant
Log in to post a reply

Oct 20, 2021 04:37PM pamep wrote:

DaughterOfB: If my MO had his way I would be splitting the standard 20 mg in two 10's per day. Actually, I have been splitting the pills for my trial and error. I find the 5 mg gives the brain fog, which is its most disconcerting daily SE. So rather than having two brain fogs each day, I am going to work up my will to try a 10 mg in the early evening and see how that goes. From your post it sounds like your MO wants you on 10mg per day. The point is to get to a certain level in the blood and keep a certain bias. Apparently the half life of the drug is 4 to 7 days after a steady state is reached. Above that level, there isn't any extra benefit but there is higher risk and general SE's.: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4053098/ https://breast360.org/news/2020/07/31/could-i-try-a-lower-dose-tamoxifen/ What is truly frustrating is that there has never been a clinical study to determine the minimal effective dose for invasive breast cancer vs prevention.

There has been some precaution about splitting the tablets but it seems mostly to apply to caregivers. I swallow the split with a surrounding soft food but I wonder if it might be safer to take the 10 mg pill as is.

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast Hormonal Therapy 3/1/2022 Arimidex (anastrozole) Hormonal Therapy 3/1/2022 Arimidex (anastrozole)
Log in to post a reply

Oct 20, 2021 04:58PM daughterofbarb wrote:

Thanks for the links, PamEP. I hadn’t seen the second one. Unfortunately it seems all the studies on lower doses relate to noninvasive BC.

My MO is actually completely supportive of me taking only 5mg a day. I am the one who is considering bumping up to 10mg if I can bear the side effects. I think having a supportive MO who actually listens makes a huge difference. Of course as a medical professional he recommended that I take the full 20mg, but given the fact that I was leaning towards foregoing tamoxifen all together, he has no objection to my doing 5mg daily. I’ll probably try 10mg daily after my exchange surgery in November. Hope your side effects continue to be mild and improve!

Dx @ 46, Oncotype DX Score = 7, Nipple Sparing Double Mx, Tamox @ 5mg daily Surgery 7/15/2021 Lymph node removal (Right); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Left) Surgery 8/1/2021 Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Hormonal Therapy 9/1/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/16/2021 Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Surgery 4/25/2022 Reconstruction (Left): Fat grafting, Silicone implant, Silicone textured implant; Reconstruction (Right): Fat grafting, Silicone implant, Silicone textured implant
Log in to post a reply

Oct 21, 2021 11:18AM pamep wrote:

Kaycee: Just to let you know that I took the 10mg yesterday with little side effect. Small brain fog and headache. I wonder if breaking the pill causes an increase in nausea. I will probably alternate between 5mg and 10mg for a while. Good luck to you!

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast Hormonal Therapy 3/1/2022 Arimidex (anastrozole) Hormonal Therapy 3/1/2022 Arimidex (anastrozole)
Log in to post a reply

Oct 21, 2021 11:21AM lala1 wrote:

Just my two cents as far as SEs when starting Tamoxifen.....brain fog is also a VERY common side effect of surgery. My dad is a surgeon and he warned me that the brain fog from anesthesia can often last as much as a year. He's seen people struggle with for even longer, albeit rarely. So don't be too quick to blame it on the Tamoxifen. Also, I found Tamoxifen to be very dehydrating. It was only after I started drinking lots (and I do mean lots!) of water, which I learned about on these boards, that I realized just how bad it was for me. All the nausea and dizziness went away after I upped my water intake. Both of those SEs are also SEs of dehydration.

And one last thing...I dealt with terrible burping for a few years after being diagnosed. In retrospect, I realized that it was about the same time I went to see a holistic doctor about various SEs from Tamoxifen. He recommended turmeric (which I honestly can't say enough good things about as far as helping with my joint pain from Tamoxifen) but he also recommended a couple of other supplements which I happily took. It took years before it occurred to me to see if the supplements might be causing the burping and through experimentation I found that stopping my ginger and fish oil did the trick! Who would have thought? I know fish oil can cause "fishy" burps but it doesn't tend to just cause excessive burping. And ginger is known to settle your stomach so the 2 I thought least likely to be the culprit actually were. And when I casually mentioned this story to my doctor at my next well visit, he said that he wished I had told him about my issue with burping because he would have told me that fish oil and ginger are known "muscle relaxers" and they have a tendency to relax that part of your stomach ( I think it's the epiglottis) that helps keep air down! So moral to that story is if you're having issues, talk to your doctor and ask questions here. You never know!

Mentor smooth round high profile memory gel implants 600cc (Left); Allergan 10 Moderate Profile 120cc (Right) ; Oncotype 15 Dx 11/27/2012, IDC, 2cm, Stage IIA, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 12/12/2012 Mastectomy; Mastectomy (Left) Hormonal Therapy 1/31/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/25/2013 Reconstruction (Left): Silicone implant Surgery 6/24/2014 Reconstruction (Left): Nipple reconstruction Surgery 1/19/2015
Log in to post a reply

Oct 21, 2021 01:02PM princessbuttercup wrote:

KateHanni-

I was tired for months after radiation. It was the hardest part of my treatment so far, even harder than chemo. A friend of mine who is a radiologist told me that they don't like to tell people how difficult it will be in advance, because they might not come back for treatment. Maybe your tiredness partly comes from having had radiation so recently?

I will also say that when I first started Letrozole, I felt great for several months. The side effects didn't kick in for a while. Letrozole is hard for me, but tamoxifen was worse. Then again, one of my friends sailed through 10 years of tamoxifen, no issues at all. I think every person is different, and you mostly hear about the problems here.

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 11/1/2021 Aromasin (exemestane) Hormonal Therapy Femara (letrozole)
Log in to post a reply

Oct 21, 2021 04:33PM pamep wrote:

lala1: Yes, dehydration might be the reason behind the headaches and brain fog. These two side effects come up about a half and hour after taking the pill. Yesterday I drank a number of cups of tea (maybe ginger and lemon, or turmeric and ginger) and side effects were minimal. Thanks for the tip!

So far I am finding tamoxifen very tolerable. I am hoping that it does not cause any musculoskeletal issues, which I understand are more prevalent with the AI's. We all react differently to these hormone drugs and have to try them out to see if we can adhere to the program.

Dx 7/26/2021, IDC, Right, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-, IHC Surgery 8/6/2021 Lumpectomy; Lumpectomy (Right); Lymph node removal Hormonal Therapy 10/15/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 10/27/2021 Whole breast: Breast Hormonal Therapy 3/1/2022 Arimidex (anastrozole) Hormonal Therapy 3/1/2022 Arimidex (anastrozole)
Log in to post a reply

Oct 21, 2021 06:28PM daughterofbarb wrote:

Glad to hear, PamEP. I’m holding off on increasing mine until I’m on leave from work after my exchange surgery. Rather not have any severe brain for or other SEs affect my work.

lala1, yes on the dehydration! Thanks for mentioning that. I wake up parched in the middle of the night sometimes. I really need to up my water intake.

Dx @ 46, Oncotype DX Score = 7, Nipple Sparing Double Mx, Tamox @ 5mg daily Surgery 7/15/2021 Lymph node removal (Right); Mastectomy (Left): Nipple Sparing; Mastectomy (Right): Nipple Sparing; Prophylactic mastectomy (Left) Surgery 8/1/2021 Reconstruction (Left): Tissue Expander; Reconstruction (Right): Tissue Expander Hormonal Therapy 9/1/2021 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/16/2021 Reconstruction (Left): Silicone implant, Silicone textured implant; Reconstruction (Right): Silicone implant, Silicone textured implant Surgery 4/25/2022 Reconstruction (Left): Fat grafting, Silicone implant, Silicone textured implant; Reconstruction (Right): Fat grafting, Silicone implant, Silicone textured implant

Page 3069 of 3,071 (30,705 results)

Scroll to top button