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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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Jun 3, 2020 11:14AM NoteRed wrote:

Hello to all from Athens, Greece. I'm at the second year from the diagnosis and I'm taking tamoxifen from November 2018. I have a little bone pain from time to time but last days I feel a little tired....maybe its that I'm working from home 3 months now and my activity is 0. but is it possible to be a side effect? also I have taken about 7 kg....

Dx 2/2/2018, ILC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (SPOT) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel) Chemotherapy 6/27/2018 CEF
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Jun 3, 2020 11:19AM - edited Jun 3, 2020 11:20AM by Beaverntx

Yes, fatigue is a frequent side effect of Tamoxifen. However, you are right, less activity can also be a contributor. I find that when I begin to feel wiped out, getting up and moving around helps me feel better.

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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Jun 3, 2020 11:27AM NoteRed wrote:

Thank you Beaverntx for your quick reply. the truth is that beyond all these I have a little of stress these days and it maybe it also. I have a gym-bike, I'll try to do a little every day

Dx 2/2/2018, ILC, Left, 1cm, Stage IIA, Grade 3, 7/17 nodes, ER+/PR+, HER2- (SPOT) Surgery 2/21/2018 Lymph node removal: Underarm/Axillary; Mastectomy: Left Chemotherapy 3/25/2018 Taxol (paclitaxel) Chemotherapy 6/27/2018 CEF
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Jun 3, 2020 02:50PM WC3 wrote:

MsPrecious:

I'm not sure what your diet or lifestyle is like but I usually eat at least about two cups of cooked broccoli or other vegetables daily, drink a lot of water, don't eat much meat, and try to walk regularly. It didn't stop me from getting cancer but it seems to keep everything moving for me.

Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Jun 5, 2020 12:38PM 32B wrote:

How are everyone's PMS symptoms on Tamoxifen? My mood swings have been much more prominent to the point that yesterday I was worried that I was really sinking into clinical depression. Of course, everything going on in the world right now probably didn't help that.

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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Jun 6, 2020 05:59PM klanders wrote:

Thanks, Jenny (Marksgirl)!! I really appreciated your post and encouragement. I have never heard of the BCI Test. I will definitely look into that. I had my oncology appointment and after 4 1/2 years of fighting I finally gave in to trying Effexor. My doctor said it would help with my pain and poor sleep. First night I slept one whole hour- gave me insomnia! :( The past couple nights I've slept maybe a little better than normal once I'm asleep, but it takes me a couple hours to fall asleep. Maybe I need to take it a few hours before bedtime instead of right when I'm headed to bed. I don't know how much is from my poor sleep or from the medicine, but I've been feeling more tired this week, harder to get motivated, and my brain is totally mush. And I'm almost your age - 52. Thanks again. I'll ask my doc about BCI when I see him next month.

Dx 2/1/2013, IDC, 1cm, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 2/6/2013, IDC, 3cm, 0/2 nodes, ER+/PR+, HER2- Surgery 3/28/2013 Lymph node removal: Left, Right, Sentinel Surgery 4/23/2013 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 1/27/2015, IDC, Left, <1cm, Stage IIIC, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 4/2/2015 Lumpectomy; Lymph node removal: Left, Sentinel Chemotherapy 4/30/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 8/17/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 8/26/2015 Arimidex (anastrozole), Zoladex (goserelin)
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Jun 7, 2020 07:22PM Marksgirl wrote:

klanders- Here is the website for the Breast Cancer Index test. https://www.breastcancerindex.com/

I can't tell you how helpful it was to have objective data. I was "okay" with the first 4.5 years of hormone therapy but thinking about another 5 years was so discouraging. If it would have come back high benefit, I would have sucked it up and continued - I guess! (may have modified the dose!) I am nervous about being off it - no easy decisions! There is a lot of information on this website about the BCI. Good luck!!!!


Micropapillary IDC, 47 at dx Dx 1/12/2015, IDC, <1cm, Stage IIA, Grade 2, 1/4 nodes, ER+/PR+, HER2- Surgery 2/18/2015 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 3/19/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 6/18/2015 Whole-breast: Breast, Lymph nodes
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Jun 25, 2020 11:17PM Sal462 wrote:

well here I am again, still not taking Tamoxifen but interested to see the various points of view.Someone earlier mentioned all of their doctors told them to take it. I actually didn't get TOO MUCH pressure from doctor once I made decision. That was last year, but now I'm sort of wondering if it was mistake on my part. Read something that says even stage one can metastasize a few months ago which kind of spooked me. Plus I also read about the lower dose giving you protection but less side effects. So again thinking about doing it, with the smaller dose, but maybe I just waited too long, it's been over a year since surgery and radiation done last April of 19. I'd hate to put up with any side effects only to find that because I waited so long the drug didn't work. Has anyone started it after a year? (I am telling myself that maybe it could still work, given people in the high risk category for breast cancer take it without even had surgery in the first place.)

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Jun 26, 2020 04:40PM Togethertolearn wrote:

once I finally went off tamoxifen after two attempts, I realized how silly I had been for trying for so long, based on my individual diagnosis and risks and side effects . Tamoxifen supposedly only helps keep the same cancer from coming back, not all cancer, and someone I know had two different cancers in her breast at the same time. I have enough trouble keeping the demons out of my head on a typical day, and just couldn't on that pill. For me, I now have no guilt from being off it. But I would never advise anyone either way, except to say, it's YOUR life and body, do what YOU feel is best and then accept yourchoice with peace.

Diagnosed 2019, age 45. Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Jun 27, 2020 07:32AM 32B wrote:

Sal462, I started Tamoxifen about 18 months after my surgery, and my doctors said that was risky, but they were comfortable with it given my specific diagnosis. (I took the time to have a baby.) I'm now taking a break because of the SEs, but plan to go back on in a couple of weeks. Good luck to 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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Jun 29, 2020 09:55PM Sal462 wrote:

Thanks to both of you. That is definitely interesting about it only keeping the same cancer from comin back, I didn’t realize that, am starting 18 months after surgery would be about what I’d be doing.

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Jun 30, 2020 02:14PM Salamandra wrote:

Hey Sal462,

I don't know about only keeping the same cancer from coming back. I think you should ask your med onc. If that were the case, why would it be prescribed as a preventative for high risk women who have never had breast cancer? I think it works to help prevent all hormone positive cancer, both recurring and new.

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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Jun 30, 2020 03:21PM - edited Jun 30, 2020 03:21PM by BCat40

Sal,

I told my onc I did not want to start anti-hormonals until I felt recovered from rads and got back into an exercise routine, so I said 2-3 months. She said that was fine, though the risk goes up after 3 months. So the risk goes up, but that does not mean starting very late has no benefit. I'd say if you want to try it, go ahead, there should still be some benefit. If the SEs are horrible, you could always stop. That's what I plan to do. I also plan to start at a half dose and taper up if I do not have bad SEs. The oncs are not going to tell you to do this, but the reasonable ones I have spoken to (I got several second opinions) also told me that some meds are better than no meds.

The drugs help to both prevent recurrence and also prevent new hormone positive BC. That's why they are also prescribed for preventative reasons.

Dx at 40 Dx 2/4/2020, LCIS/ILC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 3/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 6/2/2020 Whole-breast: Breast
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Jun 30, 2020 05:15PM Togethertolearn wrote:

correct, it helps keep that same kind of cancer (hormone fed) away, but not the other types of breast cancer - thus how someone had two different kinds of breast cancer at once. If a cancer isn't hormone fed, the tamoxifen doesn't affect it not ever occurring. I had two different hospitals I worked with and both said the same thing.

Diagnosed 2019, age 45. Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Jul 1, 2020 01:34PM LB13 wrote:

I started Tamoxifen one week ago today - fortunately, I do not seem to have any major side effects yet. Just extra thirsty. I don't know how long it typically takes - but a follow-up call from my MO's office today said this is promising. Anyone with SEs, how long did it take for them to start? Not looking for the shoe to drop - just curious.

Dx 1/28/2020, IDC, Right, 1cm, Stage IA, Grade 2, 1/3 nodes, ER+/PR+, HER2- (FISH) Surgery 2/25/2020 Lumpectomy: Right; Lymph node removal: Sentinel Radiation Therapy 4/28/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 6/11/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 1, 2020 02:52PM Salamandra wrote:

For me the fatigue was pretty instant (a couple days?) and never went away (hence why I'm on a different med now). The heartburn took longer to come on (1-2 weeks) but did end up going away after a while and some treatment.

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 3, 2020 10:34AM Celand wrote:

There has been a different turn of events since I fractured my ankle (fibula) and stopped taking Tamoxifen about April 20. My intention was to resume taking it once my fracture healed.

I felt better than I have felt in a long time being off of this medication, however, about June 28, I did notice some cramping, then off and on tension type headache, like I used to get when I had my period, then vaginal bleeding, medium, has been off and on since. I had started taking the Tamoxifen but Oncologist told me to stop until we find out what is going on. I had only taken it for two days so I don't know what impact this had as the bleeding had just started. I have informed my gynecologist of what has transpired and she wants to do a TV ultrasound and endometrial biopsy but the soonest that she can see me is July 27, I took the appointment and if bleeding gets very heavy I will have to go to ER.

Has anyone had this happen when stopping Tamoxifen? My MO says that this should not have happened.

Meanwhile, my ankle is still not completely healed, orthopedic dr says it is 50% healed, so still in a brace but last radiology report says that sclerosis is forming at fracture and worrisome for a nonunion to occur!

Things were going too good for me for the past couple of years, but this has been a downward spiral.

Now, I don't even know if I can or should try Arimidex again because of my broken bone taking so long to heal, this worries me.

Also worried about whether this is a side effect of Tamoxifen. Will see MO July 13, have alot to discuss.

Dx 10/17/2016, DCIS/IDC, Left, <1cm, Stage IB, Grade 1, ER+/PR+, HER2- Surgery 10/28/2016 Lumpectomy: Left Radiation Therapy 12/14/2016 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jul 3, 2020 11:01AM Beaverntx wrote:

Ah, Celand, thinking of you with fingers crossed that your ankle heals and you get the rest sorted out!

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 3, 2020 11:20AM Celand wrote:

Beaverntx,

There are many directions that this can go, but I suppose that most important is getting to the cause of vaginal bleeding, hopefully not cancer, then my ankle healing, I guess I can decide to stop all medications, after all my Oncotype DX score was a 5, so very low and take my chances.

A friend of mine who was dxd with Stage III er+ bc took Tamoxifen for 3 years before stopping due to unable to tolerate side effects, she told me to realize that this is all a crapshoot, the bc can return regardless of the medication and how long you take it!

So, I just don't know. I am sure that the MO will want me back on Tamoxifen, I just don't about the AI with the bone issue. I will have some decisions to make.

Thank you for keeping your fingers crossed for me to get all of this sorted out.

Celand

Dx 10/17/2016, DCIS/IDC, Left, <1cm, Stage IB, Grade 1, ER+/PR+, HER2- Surgery 10/28/2016 Lumpectomy: Left Radiation Therapy 12/14/2016 Whole-breast: Breast Hormonal Therapy Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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