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Topic: Bottle 'o Tamoxifen

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Nov 26, 2007 01:02PM - edited Nov 15, 2017 11:59AM 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 12, 2020 02:04PM lala1 wrote:

Definitely keep up with the movement. And water, water, water! Tamoxifen is very dehydrating so you have to drink more water than usual. Also try adding a good turmeric supplement. It must have the black pepper in it. I took Gaia turmeric for years and recently swapped to Bio Schwartz. I like them both and usually just get whichever is in stock and/or cheaper. Here's how my doctor told me to take it: take 1 capsule a day for a month and if it works keep doing that. If not, take 2 capsules a day for a month. If that works, continue with 2 for another month then wean down to 1 and see if it continues to work. If 2 doesn't work then turmeric probably won't help you. It doesn't help everyone but when it does, it really works!! My doctor also had me take ginger, fish oil with at least 900mg of EPA/DHA. I take the Vitamin Shoppe extra strength brand that has 990mg I believe. He also put me on magnesium. At his recommendation, I take magnesium glycinate. I found the KAL brand to work the best. Once I got on this regimen, most of my aches and pains faded away so I was able to get through my 5 years.

In addition to these suggestions, I will say that at the recommendation of a worker in the Vitamin Shoppe I started taking olive leaf extract capsules. I was struggling with lots of colds after my surgeries which I usually never get. I started OLE about 6 years ago and haven't had one cold since! I totally swear by that stuff!

To top off my list I take a baby aspirin twice a week to help keep blood clots away (which is an SE of Tamoxifen). I only do 2 times a week because daily made me bruise badly and my doctor feels this dose works just as well. And lastly I take a multivitamin...one with as low a dose of Vitamin E as I could find as my MO feel E is slightly estrogenic.

So there's the list! Hope this helps!

PS--Try not to worry too much about the weight right now. My MO told me that most of his patients gain about 40lbs in the first year with Tamoxifen and usually in the second year about half will come off. I gained about 15 (so he was happy) and none came off till I got off Tamoxifen. And even then it took another year for it to suddenly start to go and another 6 months to get back to pre BC weight. So just be patient and give yourself a break.

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: 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 Prophylactic ovary removal
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Jun 13, 2020 12:35PM BlueGirlRedState wrote:

wulfgirl4 - SEs and what works to alleviate vary so much with each person Not taking tamoxfen now, but when I did, did not experience joint issues or weight gain with tamoxifen, but did get very painful calf cramps, which seemed to happen almost randomly. Could go for days with no problems, then WHAM! - when active, when sitting, when stretching. Magnesium, staying hydrated, staying active, stretching all seemed to help. There are lots of formulations of magnesium. Acupuncture, yoga, Quigong might also help. An ND/Functional Medicine might also have recommendations.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

2019 Right Axilla, ER+. Ibrance and brand name Arimidex started Sept 2019. Fatigue with Ibrance and low blood counts, and occasional mouth sores. Joint issues and hair thinning with Arimidex. Tumor shrunk from 2.5 cm Sept 2019 to 7mm April 2020.

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Jun 14, 2020 11:51PM jjpope1 wrote:

I have been on T since Jan, last chemo was October. Started with swelling in my hands/feet and neuropathy almost 2 months ago and it’s hell. They’ve got my on gabapentin 600 mg 3x’s a day. Not lymphedema, just had bloodwork (came back good) and waiting on echocardiogram. She said I if all comes back ok she thinks it’s coming from T, My hands and feet feel like they’re going to but and the burning feels like ice stuck my hands in a grease fire. Has anyone else had this problem? I’m to the point I’m about to stop taking T and see what happens because I can’t continue with this pain anymore.

Dx 3/13/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/0 nodes, ER+/PR+, HER2- (FISH)
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Jun 15, 2020 05:42PM wulfgirl4 wrote:

Hi jjpope1,

I've been on Tamoxifen since Feb., last chemo was Jan. I feel swollen, too. I'm on gabapentin 600mg 2x/day but they said I could go up to 3x. I have a mild case of Lymphedema in my right arm (I didn't know there is a blood test for that???) I experience the burning feeling in my arm that has L. I thought it was nerve damage or lymphedema... idk. I just feel like this is my life now. :(

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jun 15, 2020 05:46PM - edited Jun 15, 2020 05:47PM by wulfgirl4

lala1,

Thank you so much for the info. It seems like I'm also really tired. I sleep well at night but end up sleeping in and then needing a nap later in the afternoon. I have to drag myself around to get my 10K steps. I also seem to lack motivation to do almost anything.... almost like depression... but these two things didn't hit me until now... and I've been on Tamoxifen for 4 months now.

Do you know if any of those supplements help w/ fatigue & depression?

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jun 15, 2020 08:18PM lala1 wrote:

I haven't dealt with depression but definitely had the fatigue. I'm one of those people who NEVER naps. It makes me feel groggy the rest of the day and then I don't sleep at night. But after having my surgeries and starting on Tamoxifen, I couldn't get enough of napping. My dad is a doctor (retired now) who was very successful surgeon in his day. He told me when I was first diagnosed to be prepared for the fatigue. It's his opinion that the surgeries take way more out of us than our doctors will say. He told me that for each surgery I had to be prepared for 6-9 months of ongoing fatigue! And he was right. It wasn't till I was a year out from my last surgery that I even felt close to normal again. And the Tamoxifen doesn't help. It didn't really affect me till I got to about 8 months in and then it was not fun! The only thing that helped me was exercise. Even when I really didn't want to do it, I would still go to the gym. Many times, if I was really tired, I would just do a yoga class or swim in the warm water pool but I forced myself to do something and it helped. Dad really feels that the best way to get all the anesthesia and it's after effects out of the body is through sweat. So that's what I did and by year 2 I was pretty good to go! I would think it would help depression too but I also think you need to tell your doctor about both and see what their recommendations are.

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: 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 Prophylactic ovary removal
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Jun 16, 2020 01:01AM runor wrote:

Jjpope, as far as I know there is no blood test to check for lymphedema. In fact, if lymphedema is a potential problem, you are not supposed to get injections or blood tests on the bad arm, because it can flare the lymphedema. Do not anger the nodes! From everything I've read the burning and pain is more likely to be from the chemo and not the tamoxifen. It seems tamoxifen is connected to a general, overall, creaky, achy, muscle crampy sort of feeling. But not acute, sharp pains in the extremities. 

I have my annual oncologist visit (it will be by phone due to covid this year) and I don't like to sound like a whiner, but the level of creaky is no longer funny. Getting up out of a chair, off the sofa, kneeling down and getting up, squatting and getting up... I'm like a praying mantis unfolding in sections, very slowly. I wake up in the morning with my arm bent up under my head, under the pillow and I try to bring my arm down and nope, guess not, it seems stuck up there, that shoulder joint is not going to move, so I guess I spend all day with my elbow on my ear. Hard to get your bra on that way. I know I'm old and out of shape but the decline in my physical ability cannot be this fast just because of age. It makes no sense. I used to be able to do the splits! Now I have to strategize how I'm going to get my shoes on!

I do have to note, just to be balanced, that my hair has stopped falling out. It's not growing back. I don't think. I still think my hairline has receded. But it's not all over the floor and in the tub like it used to be. I take 10mg every day. I was taking 10 mg most days and 20 mg twice a week, but I dialed it back to 10mg every day. Is this the reason my hair stopped falling out? I can't say for sure. But I'm still seized up like the Tin Man waiting for a can of oil and that seems to be getting worse. But another good thing...I noticed that for the first time since mid 2016, my boob doesn't hurt anymore. My boob hurt before cancer, hurt during the surgeries, hurt after radiation and hurt 24/7 for all of 2017, 2018 , 2019 and start of 2020. Then it quit hurting. It came as a revelation when I noticed, hey, my boob doesn't hurt anymore! I think that is due to the extreme, strenuous activity of spring cleaning the property, which including picking up, cutting, loading, re-cutting and burning truckloads of debris. For months. It's like bound up, tied up, constricted chest muscle and scar tissue got torn loose. It hurt when I was working like that but now? I have no pain. It's amazing!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 16, 2020 04:06AM Rah2464 wrote:

Runor so glad to hear the scar tissue is finally released on that boob! It can definitely take a while can't it? I have experienced the same thing after two years of massage therapy, yoga, stretching blah blah, the farm work has really helped me loosen up. Now if that would work on my joints when I first get up. Really laughed at your analogy of a praying mantis that describes it perfectly.

I had my annual Onc visit yesterday and told her that the last month on T has been, in a word, brutal. I have no idea why all of a sudden I had such an aggressive uptick in side effects. I have always had the hot flashes muscle cramps leg pain and fatigue but not on this level. I told her it had left me at about a 30% functional level when I needed full steam for spring farm work.

I had started a new refill of T but the pill markings and supplier were the same so unless the manufacturer put too much active ingredient in that lot no clue there. It has been really hot here so maybe I am extra dehydrated. Or maybe I am finally transitioning into menopause. So lots of bloodwork to see if anything like that shows. The other thing she wants me to try is to go to 10 mg pills twice a day. She said that by taking the pills twice a day, it reduces your one time peak medicine concentration , while still giving you the consistent low range concentration that is supposed to be protective. So still trying to do the 20 mg dose. I did request that she run the Oncotype RSPC calculator on me because I want more granular detail on my specific risk profile. But yikes! I hope we can get this "trend" in side effects to subside.

Dx 5/23/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 6/27/2018 Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 7/27/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 17, 2020 04:44PM BlueGirlRedState wrote:

jjpope1 - I think lymphedema is diagnosed by measuring the affected limb in several places and comparing it with the unaffected. If the affected is more than xx cm larger, than lymphedema is suspected. Everyone says no cure, but only managed. The sooner diagnosed and treated, the bettter. Ask your DR after referral for a lymphedema therapist. You might want to consult with DR and make sure it is not something else. Also check with insurance, somethings may or may not be covered. I've heard that impedence can also be used to measure. I wear a sleeve and glove, and have recently started using a "pump" at home. Self massage also helps. Swelling has gone way down since I first saw therapist, but is still there, and sometimes goes up or down between visits.

Self massage https://www.youtube.com/watch?v=sS_WzAdfcSk&feature=youtu.be

https://www.mayoclinic.org/diseases-conditions/lymphedema/symptoms-causes/syc-20374682

https://www.stepup-speakout.org/

wulfgirl4 - Fatigue sucks. Diet/Nutrition and staying hydrated. Stretch. Always do at least something, and push harder on days when you feel better. When I took tamoxifen (I'm now on Ibrance and Arimidex) it did not notice fatigue, but SEs are different for everyone. The lockdowns with COVID might also be contributing to your overall wellness and feelings, even if you are not directly affected.



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Jun 19, 2020 06:36AM wulfgirl4 wrote:

lala1

Thank you for sharing your dad’s perspective on this. I believe him. I’ve had to push myself every day to stay active. Trying so hard to be patient with myself. I just want my body back. But you’ve given me hope that it WILL happen.... in time. 😊

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jun 19, 2020 07:07AM edj3 wrote:

lala1 my dad is also a retired MD! And his advice to me was around the radiation treatment--he said all his patients who had radiation were flat out exhausted and that it lingered. His exact quote was "it really takes the starch out of you."

Inwardly I scoffed (was going through radiation this time last year when he told me that) but holy smokes he was right. I'm normally the Energizer Bunny but not last year. Between the lumpectomy (which was fine, recovered very quickly from that) and then the radiation, I didn't feel like myself energy-wise until the end of December.

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 19, 2020 09:35PM wulfgirl4 wrote:

BlueGirlRedState

Thank you! Pushing on.... good days and bad days and like you said, PUSH harder on the good days! Thank you!

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jun 30, 2020 01:57PM - edited Jun 30, 2020 02:01PM by Cricketdog

Hello! I've now been on Tamoxifen for almost 4 weeks. I eased into it with 10 mg a day, taken right before bed, after I experienced horrible insomnia the first time I took the medication. After days with 1-2 hours of sleep, I started taking a Benadryl along with it, which knocks me out. I called the MO to be sure it's OK to take the Benadryl and the nurse said it was OK but that maybe melatonin would be better. I'm going to pick some up this afternoon. The insomnia is still there. My brain feels like it is disconnected most of the time. I am mixing up dates and names and can't seem to form intelligible sentences. It is worse in the morning. I don't want to blame it on lack of sleep -- it feels different than that and is more noticeable in the morning. My shoulders, knees and neck are quite stiff and I have joint pain, almost arthritic. My vision declined severely -- the first few weeks, I couldn't see clearly after waking up and I have a red rash-like ring around half my iris that comes and goes. I will see the MO in 3 weeks. I am hoping I can hold out until then. I just don't see myself taking this medication for five years. I work in a very high pressure position where being on top of things mentally is a requirement. My staff is amazing and very understanding, as is my boss but I don't know if they completely understand the implications of this for me. I have been playing tennis 5-6 days a week with the hope it helps. The only benefit is the loss of hunger pangs. I've lost about 6 pounds by mostly skipping dinner and not snacking during the day. And I'm having vivid dreams that I remember when I wake up in the morning - they are happy dreams. I need them. I honestly feel like telling the MO that I'd rather do chemo again than do 5 years of tamoxifen.

I should add that it's been a stressful few months. The first week after my last chemo treatment, we got hit with tennis ball sized hail. Over $40,000 damage to the house. Four weeks later, lightning hit the house, nailing an A/C unit, two TVs, two internet routers, two cable boxes, internal wiring, and a desk phone I use for working from home. I'm over it all.

Dx 10/2019, ILC/IDC, Left, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 12/11/2019 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/12/2020 Whole-breast: Breast, Lymph nodes Chemotherapy 2/13/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jun 30, 2020 10:28PM runor wrote:

Cricketdog, tamox seems to hit everyone a little differently, with some symptoms coming on stronger, lasting longer, or fading quicker than other people. However...do not fool around waiting to talk to your MO about your eye! Tamoxifen can is rare circumstances be very toxic to your eyes! Go to an eye doc and tell them you are new to tamoxifen and tell them this red rash in your eyeball is new and have them investigate. Eyes heal very well if there is a problem, but they also go south really quick if you don't stay on top of it. So please do not wait. This comes from someone who has lugged her hub to an emergency room with various eye injuries and inflammations many, many times over the year. The man simply cannot keep a chunk of steel out of his eye if there's any way he can possibly stab it in there!  Have your eye looked at as soon as you can and not by your onc but by an eye expert!

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 1, 2020 08:29AM Sugar77 wrote:

Hello everyone, I’m new to this thread. I’m starting tamoxifen in the next week or so and just picked up my prescription yesterday. It’s for 20mg once a day. I’m sure this has been discussed umpteen times in this forum but I’m wondering what time of the day is best to take it. Morning, dinner time, or before bed?

Surgery 9/24/2009 Lumpectomy: Right Dx 10/27/2009, IDC, Right, <1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2- Chemotherapy 12/6/2009 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 12/5/2019, IDC, Right, 3cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/26/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 4/2/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Jul 1, 2020 09:44AM Beaverntx wrote:

Sugar, time of day is what time works for you. My pharmacist advised taking with my evening meal and that has worked for me. She was particularly adamant about taking it with a meal. Probably the most important part is to take it at a time when you won't forget to do so. I use a pill case to help as a reminder for my prescriptions and supplements.


Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 1, 2020 10:24AM Lewhy wrote:

Hi Cricketdog and Sugar,

I have been on Tamoxifen since 2/14/2018. I started taking it in the morning and was nauseous so I switched to bedtime. I have hot flashes and joint/bone pain but they seem to come and go in intensity. I can now pretty much go back to sleep after the hot flash hits. I have two to three per night which is not bad.

Cricket, I understand what you mean when you say your brain feels disconnected. After starting Tamoxifen I was having fatigue, word finding and memory issues that were so bad I thought I might have had some sort of mets to my brain. I talked to my MO and she suggested an appointment with a neuropsychologist. I spent a day testing with her; math, drawing, problem solving, etc. and it was very helpful. I found out I was having some cognitive issues and I was started on Concerta which has helped me immensely. I was resistant to starting medication but it has helped with the fatigue and I feel like I am back to myself at work! I was also told that women who have had problems with pms are often affected by Tamoxifen more than women who have not had pms issues. I had a hysterectomy because of fibroids when I was in my 40's and could not believe how much better I felt every month! No more crankiness, sadness, food cravings, etc. I never did anything about the pms, thought it was just normal and lived with it.

I still have hot flashes and joint issues but nothing that I cannot handle, and who knows, the joint issues may be my age! Good luck!

Dx 10/18/2017, DCIS, Right, 1cm, Stage 0, Grade 3, ER+/PR+, HER2+ (IHC) Surgery 11/16/2017 Lumpectomy: Right Radiation Therapy 12/27/2017 Whole-breast: Breast Hormonal Therapy 2/14/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery
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Jul 2, 2020 05:49PM scoop wrote:

I've been on tamoxifen for 4 months. Last week I started feeling like swallowing was difficult. Today that escalated into a full on panic attack. Doc says throat looks fine and its just anxiety. I know difficulty swallowing is listed as a side effect of tamoxifen. Has anyone else experienced it? I find it pretty distressing.

Dx 1/2020, IDC, Right, 2cm, Grade 1, ER+/PR+, HER2- Surgery 2/11/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 2, 2020 11:29PM Veeder14 wrote:

Hi Scoop,

Tamoxifen can irritate the stomach and it sure does it for me. I have GERD/Acid Reflux and one of the symptoms can be the feeling like it's difficult to swallow, like the pill or food is getting stuck even without anything physically blocking your throat. I think it's sort of like getting spasms but not sure. I've had it a couple of times but I take medication to protect my stomach/throat from the irritation of the Tamoxifen. I've got 3 1/2 more years to go. Ugh.

When you say your doctor told you that your throat look fine what type of exam was done to check on your throat? I've had several endoscopies where they actually look down your entire throat and it's not pleasant. Why does your doctor think it's anxiety? i would get a second opinion because you don't want to have throat/stomach damage which can easily be prevented with stomach medication. I always remain upright after taking the Tamoxifen because laying down can also irritate the throat/stomach. Let us know what you find out.

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Jul 3, 2020 09:42AM scoop wrote:

Hi Veeder, the doc gave just a quick look into my throat because I was saying I couldn't breathe, so he verified my throat was not actually closing up. I got some anti anxiety drugs which calmed my breathing and went home. My throat still feels funny, but I can't tell if it is because I am hyper focused on it or because it's real.


Are there any over the counter things I could safely try to see if this is stomach related? I see the MO in two weeks, but when I called her office as this escalated she didn't seem to acknowledge any link between tamoxifen and trouble swallowing.

Dx 1/2020, IDC, Right, 2cm, Grade 1, ER+/PR+, HER2- Surgery 2/11/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 4, 2020 02:24AM Veeder14 wrote:

Hi Scoop

You could try the antacid over the counter medications to see if that helps. Take it about an hour before you eat and follow the directions on the package. You can eat non spicy foods, like bland foods, small meals, don’t eat about 3 hours before sleep. You can also ask for a referral to a GI doctor to be evaluated. There are PPI meds that help heal stomach and throat irritation but are prescription. Take the tamoxifen with food if you aren’t already I hope you get this figured out soon.

Dx 1/2/2018, ILC, Left, <1cm, Stage IB, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 1/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 3/8/2018 Hormonal Therapy 2/28/2019 Hormonal Therapy
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Jul 4, 2020 08:06AM flashlight wrote:

Hi scoop, I sometimes have difficulty swallowing and have increased heartburn from Tamoxifen. I also have hypothyroidism and a goiter that contributes to swallowing issues at times. What I have found is that when I don't drink enough water these issues increase. Take your Tamoxifen with at least 8oz or a bottle of water each time. If you are unsure it is heartburn take the 14 day Omeprazole treatment. That should rule it out. I now take Pepcid, but Zantac really worked better for me. My allergies seem to be worse this summer so I use the generic Zyrtec and the generic Flonase from Costco. Post nasal drip can cause swallowing issues as well. You need time to heal you have put your body and mind through a lot. Give yourself a break and try to relax. Best wishes.


Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 11/26/2018 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 1/27/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 4, 2020 10:34AM Beaverntx wrote:

I take generic loratadine every day since starting Tamoxifen. I was advised to do so and think it helps. We have had so many allergens around here in a regular basis that it is hard to know...

Re allergies, Benadryl is a no no because it interferes with the action of Tamoxifen. Bad news for me as my PCP recommends the usual antihistamine in the morning and Benadryl at bedtime when allergies are really bad.

Diagnosed at age 77-- Oncotype 17, dealing with this bump in the road of life!!🎆 Dx 1/24/2018, IDC, Right, 2cm, Stage IB, Grade 3, 0/9 nodes, ER+/PR+, HER2- (IHC) Dx 1/30/2018, DCIS, Right, <1cm, Stage 0 Surgery 1/30/2018 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 3/11/2018 Whole-breast: Breast Surgery 6/15/2018 Prophylactic ovary removal Hormonal Therapy 6/19/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 4, 2020 11:23AM scoop wrote:

Thank you ladies for the info! I also had thyroid cancer and a thyroidectomy five years ago. That is unlikely to be the issue I think, as it wouldn't just pop up so fast if it did recur.


I'm hoping my MO will address this seriously, but she sort of seems to shrug off reported side effects so far. We are still early in our relationship though.

Dx 1/2020, IDC, Right, 2cm, Grade 1, ER+/PR+, HER2- Surgery 2/11/2020 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Jul 5, 2020 10:12AM Salamandra wrote:

I got really bad heartburn from tamoxifen. My MO referred me to someone in the system who works with stomach stuff and they examined me and did an endoscopy and didn't find anything. I did get prescription Prilosec for a while, which is just like regular but I could get it cheaper. Even with the Prilosec, I had to be careful with what I ate, but it did get it to bearable. Eventually the heartburn mostly went away and I came off the Prilosec. Then I just kept some tums and chewed it before or after I eat something that I think is likely to aggravate my heartburn.

It could definitely be a combination of dryness, heartburn, and anxiety. I mean, I feel anxious when I get a new symptom - especially something related to something as visceral as breathing! And there's certainly enough going on around us to feed anybody's incipient anxiety levels.

I also did not have an easy time talking with my MO about my side effects. She would be quick to refer me for more tests but once those tests came back clear, she seemed to just want to foist me off on to the integrative medicine team for side effects support - which I am mostly a skeptic on. But I think that she does not consider herself an expert on side effects management or thinks she needs to be, which is both reasonable and kind of admirable (how many MDs are willing to acknowledge that they are not experts in everything, and she deals with a lot of cases more serious than me) and frustrating.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/17/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/18/2019 Fareston (toremifene)
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Jul 10, 2020 07:16PM wulfgirl4 wrote:

Hello again! In all of your experience, would you say that Tamoxifen causes inflammation? I feel like my legs and especially my ankles and feet are so swollen. I notice it more towards evening, but it's worse than it ever was "Pre-Tamoxifen." Just drink more water??? It's so uncomfortable.

Thank you for any advice you can share. :)

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jul 11, 2020 12:20AM runor wrote:

Wulfgirl, my feet swell terribly and have for years before tamox so I don't think I can place all the blame there. However, one of the first joints I noticed affected were my ankles / feet. It literally felt like my legs had turned to wood and I lost mobility in the ankle and foot joints and walking became awkward and strange. I trudged. I could not flex in the ankle like before. I tripped and stumbled a lot. Then I noticed that the swelling that used to be just in my feet had moved up to cover my ankles. I think the annoyed and angry joints in my feet contribute to the overall swelling. Tamox might not be the original cause but it sure didn't make anything better and in fact made things a bit worse.

I take a water pill for my blood pressure and this is supposed to get rid of the swelling. It does not. Nothing does. I go to bed with swelled feet and I wake up with swelled feet. It feels pretty gross. Hot weather is the killer. The swelling is not as bad in the winter. So I have to say that tamox probably isn't the only reason you swell, but where joints are angry, swelling in that area makes sense. 

Dx 3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 4/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 7/5/2017 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 11, 2020 06:53AM wulfgirl4 wrote:

runor,

You've perfectly described how I feel. My ankles & feet feel like they've turned to wood (I notice this mostly throughout the night when I get up to use the bathroom and have to "trudge" as you say) and again in the AM when I get up for the day. I try to do stretches to wake up my joints before my feet hit the floor.

Dx 8/3/2019, DCIS/IDC, Both breasts, 1cm, Stage IIIB, Grade 1, 1/9 nodes, ER+/PR+, HER2- (FISH) Chemotherapy 8/20/2019 AC + T (Taxol) Surgery 2/11/2020 Lymph node removal: Left, Right, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2cm, Stage IIIB, Grade 3, 1/9 nodes, ER+/PR+, HER2-
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Jul 14, 2020 11:42AM AMotherof2 wrote:

Hello Ladies, I've been prescribed Tamxo, since December of 19. Spoke to my Onc she mentioned its upto me. She said take it for a little while then see how it goes. Like everyone else I am concerned about the side effects.I just had my reconstruction surgery yesterday. So I just wanted to know who had side effects and if it was tolerable, I know we all react differently. I'm glad to be part of an Amazing Group of Women.😁 And don't have to take this journey alone.

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Jul 14, 2020 03:10PM MsPrecious wrote:

For me, the side effects are not interfering with my day to day activities. When I saw that my hair was falling out when I comb or wash, I decided to be washing it once in 2 weeks, so I comb only when I wash. It's less than the length of my pinkie anyway. For hot flushes, I use a/c and ceiling fan combo. Ankle pain once in a while but still tolerable. Bone pain tolerable too. I'm only extra sensitive to sound, the TV makes me freak out, so volume is on 1. Insomnia is part of it and when it comes, I use that period to say my prayers.

Please try and divert your attention away from it, so the side effects come unnoticeable. We have gone through the worst, tamoxifen too will pass.

Dx 3/2019, IDC, Left, 6cm+, Stage IB, 0/2 nodes, ER+/PR+, HER2+ Chemotherapy 4/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 4/1/2019 Herceptin (trastuzumab) Radiation Therapy 9/30/2019 Whole-breast: Breast, Chest wall Immunotherapy Immunotherapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary

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