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Topic: "Tamoxifen Road" - Support and Encouragement

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: Jun 6, 2019 12:25AM

Michelle_in_cornland wrote:

For those that are taking Tamoxifen, considering taking Tamoxifen and need support, and for those that have completed Tamoxifen Therapy. There is alot of good and helpful information on many threads. Thought it would be nice to have information and experiences logged together on Breastcancer.org in a main Tamoxifen thread.

I have been thinking about starting this thread for awhile. I am in my third year of Tamoxifen!!! Yeah!!!! But, in the beginning, I was a chicken and scared to take Tamoxifen. I have worked my way through several stages of Tamoxifen therapy, and am doing amazing.

Please share your ideas, questions and personal journey on The Tamoxifen Road. We can help each other succeed in our Tamoxifen Therapy.

Live free - Oncotype 14, Take things as they come and you can do it!!! Dx 8/8/2016, IDC, Right, 2cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 8/29/2016 Radiation Therapy 10/6/2016 Whole-breast: Breast Hormonal Therapy 2/14/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Prophylactic ovary removal
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Posts 421 - 450 (548 total)

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Nov 22, 2019 08:37AM flashlight wrote:

Vargadoll, It didn't take long to recover from my D&C. You can have bad menstrual type cramping after, but I didn't. The hardest part for me was that you couldn't lift anything over 10 pounds. About a week or so after I picked up the vacuum cleaner and then I started bleeding. Follow the discharge instructions and you will be fine. I am also postmenopausal. One of the Tamoxifen side effects for us is a thickened lining and they are not concerned about this unless you start spotting/bleeding. My GYN said a thickened lining can cause pelvic pressure and cramps. Unfortunately, this is happening to me so I have decided to have a hysterectomy next year. Because of osteoporosis I want to continue on Tamoxifen. I am now on 10mg.

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 1/28/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2019 08:49AM Vargadoll wrote:

Thanks, Flashlight! I have a handicapped childnthst weighs 116. She walks with assistance and I typically dont have to lift her but there are times when I have to. I can do a week with help from my family. I just hate to have my DH and DD do anything for me. I'm so stubborn! I googled last night and now I'm freaked the hell out! I told myself I wasn't going to!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Nov 22, 2019 01:44PM flashlight wrote:

Vargadoll, I know I was a nervous wreck and only thought the worse! It is hard to behave and let others help you out!! I did feel so much better after they removed my fibroid. As you age they are supposed to calcify, but the Tamoxifen wakes them up. It is always something!!Best of luck to you.

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 1/28/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 22, 2019 08:31PM Togethertolearn wrote:

two nights ago and now today, I have leg pain, no reason for it at all. Couldn't sleep due to it two nights ago. Figure it must be a SE and i guess it'll pass Always an adventure!!

Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Nov 23, 2019 09:14AM flashlight wrote:

Togethertolearn, Are you on magnesium for the leg pain/cramps?

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 1/28/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 23, 2019 03:38PM Togethertolearn wrote:

flashlight I have started taking a multi vitamin and vitamin d (for SAD

Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Nov 23, 2019 05:20PM flashlight wrote:

Hi Togethertolearn, Most of us on Tamoxifen take magnesium because of the side effect of leg cramps. There are 3 different kinds and there are a lot of post about this supplement. I take one 400mg after dinner every day and it has helped. From this site I learned about K2 with Vit D3. I hope it is making a difference because my D level was low. I hate the time change. It gets dark now so early. Good luck to you!

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 1/28/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2019 08:30PM ProudMom_Wife wrote:

Hi, just wanted to join in to hopefully give some encouragement.

Everyone is different and what works for one person might not work from another. Then again reading/hearing about others experiences might help folks with making decisions on whatever paths to try.

I started taking Tamoxifen back in July 2011. After 6.5 years I switched to Femara due to some side effects, then to Aromasin because the SE's with Femara were so bad for me, and now I am back on Tamoxifen because in the two years I was on an AI I had 10% bone density loss, not to mention other SE's which were impacting my quality of life.

I was ready to stop the hormone therapy part of my treatment. Thankfully I have an awesome Oncologist who is very supportive and honest with me and supported me regardless of my decision on what to do. So after a good conversation and research (thanks to this site for a lot of the information I found) I decided to go back to Tamoxifen. Hoping that in the last few years of my treatment that I will be able to tolerate the SE's of Tamoxifen. I know that my body needs to adjust again, but I will give it my best effort, make adjustments and give it my all.

A few things I have learned along the way which helped me which I hope to use with this next phase, and adjust as necessary are:

- Exercise. This really makes a difference, found yoga is really beneficial for me. Staying active, whether taking walks, hiking, biking, etc... just staying active has a positive impact on my Quality of Life. Weight baring exercises are now more important for me due to the bone density loss that I have experienced.

- Eat healthy (but I will not give up my dark chocolate and red wine). Making additional adjustments now with my diet due to the bone loss.

- Maintain a healthy weight. This really made a difference for me. I know because my weight has bounced around. Really made a difference with the lymphedema too.

- Reduce stress. Sometimes that means walking away from the stress, but getting rid of the stress can make life so much better.

- Supplements really help me. Got approval from my Oncologist for everything I take. Once again everyone is different, so talk to your doctor before taking supplements. I take Turmeric, B6/B12, CoQ10, Glucosamine/Condroiden, L-Glutamine, and Calcuim/Magnesium.

- Getting a good nights sleep is really important. Sometimes I need to take Melatonin or CBD oil if I have issues with sleeping. It is not an every night necessity for me, but sometimes I just need the extra help to fall asleep.

- Find something to do which makes you feel good. A hobby, volunteering, mentoring, playing with your kids, grandkids, neighbor's kids, etc....

- LAUGH! Laughter really does make life better.

- Talk with your oncologist and be honest with them. If they dismiss your concerns and do not address your questions, find another one.

Remember, this life is your, your choice on what to do or not do, but be open to hear the advise of others and most importantly trust your gut on what is best for you.

Dx 10/1/2010, IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 11/17/2010 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/5/2011 AC + T (Taxol) Surgery 4/25/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/16/2011 Hormonal Therapy 7/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2019 09:15PM DorothyB wrote:

ProudMom - small amounts dark chocolate (over 70% so really dark, not just Hershey's dark) and wine in moderation are both actually good for you according to several sources I have read (latest being book I'm reading now by Oz - Food can Fix It (or something like that))

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Nov 24, 2019 09:43PM 32B wrote:

Proud Mom Wife thanks for the tips. It's great to hear from someone who's been taking Tamoxifen for a long time.

Doing what we can to reduce stress and not allow other people to add too much negativity is so important to physical health.

I'm 8 days into my 5 year "sentence" and it feels a little silly but 1 full week was a big milestone for me. Feeling proud, encouraged, thankful.

Dx 1/12/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 2/9/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/16/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Nov 24, 2019 11:09PM Togethertolearn wrote:

proud mom, I have a feeling I will be glancing back at your awesome post often, thank you.Tonight I have skipped my tamoxifen just to see if it's true and I'd feel way better tomorrow. Just to see. Always an adventure!

Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Nov 24, 2019 11:55PM DorothyB wrote:

TogetherToLearn - the two times I skipped my daily pill (once on purpose and once accidentally), I did feel much better the following day. I just took 1/2 dose another time hoping I would feel better, but couldn't tell any difference. I'm sort of glad I couldn't as it keeps me from being tempted to do that again.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Dec 4, 2019 09:29AM Wereflyn wrote:

Pupmom

Thank you for your post regarding the length of time you have been on Tamoxifen. I have been on Letrozole since February 2019 and have seen gradual increases with the side effects. More and more muscle and joint pain and 10+lb weight gain.I was diagnosed with Osteopenia at the same time my breast cancer was diagnosed.

I saw that you were on Aromasin for 2 years. Can you tell me which drug you preferred. I am not due for another bone density scan until August and if Tamoxifen has less side effects and is better for your bones it is worth a try. I see my mo next month.

Thanks

Dx 7/22/2018, IDC, Left, 1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 8/4/2018 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Silicone implant Chemotherapy 9/17/2018 AC + T (Taxol) Hormonal Therapy 3/3/2019 Femara (letrozole) Radiation Therapy 3/18/2019 Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 5, 2019 05:03PM PebblesV wrote:

ProudMom - well worded! Thanks for posting all that. It’s similar to a lot of what I try to do (with varying degrees of success) which may or may not be why I’m experiencing little of any SEs almost a year into tamoxifen. I think exercise is key - especially yoga and weights and stretching.

The diet is tough for me. When I’ve been able to be disciplined about it, it’s great. Lately I haven’t been disciplined and I’ve gained back 10 of the 30 lbs I’d lost - and the weight gain was post-tamoxifen. Has anyone had success losing weight on tamoxifen? I’m trying not to blame tamoxifen as I haven’t been the greatest on diet lately, but still...

I haven’t tried magnesium but want to. Does it come in gummy form? I hate the idea of another pill. I take vitamin C, vitamin D, B, fish oil, CoQ all in yummy gummy form.

Dx 9/7/2018, IDC, Right, 1cm, Stage IIA, Grade 2, 2/2 nodes, ER+/PR+, HER2- (FISH) Surgery 9/19/2018 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 5, 2019 05:13PM - edited Dec 5, 2019 05:40PM by LJDH0709


I have been on Tamoxifen for 1 year and 7 months and really have been struggling with side effects as of just 4 months ago.Which I cant understand. 

So went over a year and only had minor side effects.  Now I am extremely fatigued some days ...to the point that I need to sleep and other side effects also that are getting more difficult to deal with but mostly the exhaustion.

I have heard that sometimes some women take a break for as long as a month.

How do you know when its time to do that and do the same side effects come back when you start taking the Tamoxifen again.


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Dec 5, 2019 05:28PM - edited Dec 5, 2019 05:29PM by LJDH0709

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Dec 5, 2019 06:36PM gb2115 wrote:

It's because the side effects build. I was told that, and a family member who was also on tamoxifen was told to prepare for that. So what you experience in the first few weeks isn't necessarily what you get a couple of years later.

This has definitely been my experience. I had a really easy tamoxifen start and now I still take it but I definitely don't like to!!!

Dx IDC in October 2016, stage 2A, 1.2 cm ER/PR+ Her2-, Grade 2, 1/3 nodes. Mammaprint low risk luminal A, Lumpectomy + radiation + tamoxifen. Age 38 at diagnosis.
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Dec 5, 2019 07:34PM LadyBug13 wrote:

I'm not sure if there is doctor on this string but I have a medical question: I was diagnosed with LCIS two years ago and have had a lumpectomy and have been on Tamoxifen for these two years. In a recent exam it's confirmed that I have a new nodule (about 6mm in size) that has grown and I will have it biopsied. How is it possible that while on Tamoxifen a new nodule can grow? What does that indicate?

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Dec 5, 2019 07:57PM DorothyB wrote:

LadyBug, I am NOT a doctor, just another cancer survivor. Tamoxifen keeps cancer from "growing" by blocking it from getting the "food" (glucose, etc) that it needs. Tamoxifen only reduces chance by about 40% or 50%. It isn't a 100% preventative. It is also possible that the new nodule had started growing before your original diagnosis but was too small to be seen.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Dec 6, 2019 08:11AM dtad wrote:

Ladybug13...I'm so sorry you are facing a possible recurrence. I totally agree with DorothyB. Unfortunately anti hormone therapy only decreases recurrence rates by 40-50 percent. That being said sending positive thoughts that the nodule is benign. Good luck and keep us posted.

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Dec 6, 2019 10:46AM LJDH0709 wrote:

Thank you. I understand now.  so I am guessing that even if you take a month off the side, once you start taking it again the side effects will gradually increase as the Tamoxifen builds up in your system.

Thank you so much.


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Dec 6, 2019 09:26PM marianelizabeth wrote:

I will start Tamoxifen in January. I may be on the wrong thread as I am way past menopause. I was on Anastrozole for 4.5 years prior to a diagnosis of advanced cancer. I have done 4 different chemos in the past 2.5 years and my MO suggests Tamoxifen, since a recent PET/CT shows stability. Are any of you in a similar situation?

breastcancereh.blogspot.ca Surgery 9/6/2012 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/14/2012 AC + T (Taxol) Surgery 3/4/2013 Lymph node removal: Right, Underarm/Axillary; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/28/2013 Arimidex (anastrozole) Radiation Therapy 5/6/2013 External: Lymph nodes, Chest wall Surgery 12/5/2013 Reconstruction (left); Reconstruction (right) Surgery 12/11/2016 Reconstruction (right): Fat grafting, Silicone implant Surgery 6/25/2017 Reconstruction (right) Radiation Therapy 9/7/2017 Surgery 9/8/2019
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Dec 7, 2019 01:25AM Artista928 wrote:

some have no ses, some when they start, some in the middle. Ses don't build necessarily. This isn't chemo. My hot flashes that were bad in the beginning is gone. I'm post menopausal so makes it even more strange. Same with cramps. Gone, and I have fibroids. There is no rhyme or reason. What will be will be. Only way to know is try it. With my profile I'm on the max years plan. AIs are detrimental for me unfortunately because it may provide a little more protection. Oh well. I threw the book at it. If it comes back I know I did everything I could.

Dx'd at 50. Doing it all, all by myself. Stopped Letrozole after 5 weeks. Debilitating se's. Back on Tamox now. Dx 6/2/2015, IDC, Left, 6cm+, Stage IIIA, Grade 3, 1/4 nodes, ER+/PR+, HER2- (DUAL) Surgery 8/6/2015 Lymph node removal: Left, Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2015 AC + T (Taxotere) Radiation Therapy 5/2/2016 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 6/28/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 12/9/2016 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 2/14/2017 Femara (letrozole) Hormonal Therapy 3/26/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 9/1/2017 Reconstruction (right): Fat grafting, Silicone implant
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Dec 7, 2019 09:36AM 32B wrote:

Thanks, Artista! I'm 3 weeks in and so far so good but I'm worried about the other shoe dropping. I guess it's different for everyone. Glad SEs aren't too bad for you!

Dx 1/12/2018, DCIS/IDC, Right, <1cm, Stage IA, Grade 2, 0/8 nodes, ER+/PR+, HER2- Surgery 2/9/2018 Lymph node removal: Sentinel; Mastectomy: Right; Reconstruction (right): Tissue expander placement Hormonal Therapy 11/16/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 7, 2019 10:18PM ProudMom_Wife wrote:

Wereflyn the SEs of each affected me differently.

However, even if I did not have the bone density loss I would have probably been talking to my oncologist about going back on Tamoxifen or quitting all together due to how the SEs of Femara and then Aromasin affected my Quality of Life.

Femara was really hard on my joints (hard to walk in the morning and made me feel like I was 20 yrs older than I am), not mention it caused vaginal atrophy and killed my sex drive. So after a year I switched to Aromasin, which was better on my joints, however caused really bad Insomnia and did nothing to improve the my sex drive. My husband has been supportive, but it was still affecting our relationship. Since these SEs did not happen while I was on Tamoxifen, and Tamoxifen is better for my bones I am willing to try it again.

Tamoxifen does affect me though, hot flashes, leg cramps, weight gain, and slight joint pain but not as bad. I have also learned through the previous 8.5 yrs to do things to combat the SEs which I mentioned before. I will happily say that after switching back to Tamoxifen I am sleeping so much better and my mojo is coming back :) So for me Tamoxifen is better for my QoL at this point in life.

One thing that gives me hope through this experience is that each time I changed medications, the SEs which prompted me to switch went away. I know there have been some who have lingering SEs, perhaps I have been lucky. I am going to hold onto that hope though for the remaining 1.5 yrs of treatment.


Dx 10/1/2010, IDC, Left, 1cm, Stage IIA, Grade 2, 2/4 nodes, ER+/PR+, HER2- Surgery 11/17/2010 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 1/5/2011 AC + T (Taxol) Surgery 4/25/2011 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 5/16/2011 Hormonal Therapy 7/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 8, 2019 09:26AM LadyBug13 wrote:

Thank you for your reply. Having support is helpful. I appreciate it.

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Dec 8, 2019 09:28AM LadyBug13 wrote:

Thank you so much! I appreciate this forum and your support. 

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Dec 9, 2019 07:55PM ChaClarey wrote:

Day 1

Oncotype 16 Dx 8/16/2019, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (DUAL) Surgery 9/17/2019 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 10/22/2019 Lymph node removal: Sentinel Radiation Therapy 12/15/2019 Whole-breast: Breast, Chest wall Hormonal Therapy 1/22/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 15, 2019 04:26AM Aseye wrote:

Hello everyone I have been on tamoxifen for a month plus now and after chemo my doctor asked me to repeat full blood count and liver function test just to make sure everything is ok. Which was October ending I started taking tamoxifen on 12th November repeated liver function test and did a second one on 13th December and I can see a rise is my ALT and AST I'm thinking is it the tamoxifen that's causing the rise? Anyone had any ideas

Dx 4/12/2019, IDC, Left, 2cm, Stage IIIB, Grade 2, 20/21 nodes, ER+/PR+, HER2- (IHC)
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Dec 15, 2019 05:55PM DorothyB wrote:

My Med Onc does blood work to check those levels every three months, so I would guess that the tamoxifen is causing it.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3

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