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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 5, 2019 09:25PM

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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Feb 2, 2020 08:55AM - edited Feb 2, 2020 11:07AM by Polkadot1

So I tried to start Tamoxifen in October and had lots of SEs - ridiculous insomnia, leg pain, dizziness, IBS issues etc....and this was at half dose of 10 mg every other day. MO said to stop for the holidays (and my son's wedding) and re-start in January at an even slower ramp up schedule. So I started at 5 mg every other day, then 5 mg/day. I know this is a crazy low dose but my sensitivity to ANY medication is crazy too. I am a small person and have NEVER been able to tolerate meds. BUT, I was determined to be positive and expect positive results so I was dealing with the insomnia, the depression (which I have never had in my life), the anxiety, the crying for no reason as best I could assuming my body would adjust at some point. Then last Thursday I wake up with the left side of my face numb and tingling. Incidentally during this time I started experiencing what I assumed to be lymphedema symptoms of numbness and tingling in my left arm (affected side), so thought this may be related. I called the MO and they wanted me to go to the ER saying it was not associated with lymphedema and to stop the Tamoxifen. So I went to ER and they did bloodwork, EKG, CT scan w/contrast to rule out stroke and all was clear except fo elevated liver enzymes which I know is an effect of Tamoxifen as well.They also wanted MRI but I chose to wait on that and see how I did. I have not taken the Tamoxifen for 3 days now and today I feel like a new person. The facial tingling stayed through yesterday and still doesn't feel 100% normal today but getting much better. My arm tingling and numbness is better too. Has anyone else had this type of reaction? I will be calling my MO tomorrow for a follow up and am wondering what she will want me to do next. I assume she may want to try a different drug but AI's are not on the table due to osteoporosis. UGH- does it ever end?

Surgery 7/15/2019 Lumpectomy: Left; Lymph node removal: Sentinel Dx IDC, Left, <1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2-
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Feb 2, 2020 12:16PM rain88 wrote:

Polkadot1, I just had my first follow up after a month on Tamo, 20 mg. Like you, bad case of insomnia, tingling, needles and pins in legs, arms and scalp, especially at night, driving me crazy. These were the most bothersome SE for me. My MO instructed to stop taking Tamo for a few weeks and start anew with 10mg (I am also on the slender side, bodywise). Right now I feel delightfully good, and grateful for it. Food has taste again and sleep, even though not fully restored, is much, much better. I hope things will improve for you too. Lots of hugs!

Dx 7/2019, IDC: Mucinous, Right, 1cm, Stage IA, Grade 1, 0/10 nodes, ER+/PR+, HER2- Radiation Therapy 11/27/2019 Whole-breast: Breast Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lumpectomy: Right
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Feb 2, 2020 02:02PM ChaClarey wrote:

I started tamoxifen December and had bad hip pain so my oncologist stopped tamoxifen after two weeks to do further tests. Tests were negative. I was also experiencing 12-13 hot flashes a day. I am also on the petite slender side. I went back In January and oncologist said to start at 10mg. I have been on for a couple weeks and so far only a few mild hot flashes. Will meet again in February to see about ramping up to 20mg. Maybe it will be better this time.

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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Feb 4, 2020 03:50PM PebblesV wrote:

I agree with what everyone says re: exercise helps combat side effects! And yoga and stretching is particularly good to combat joint pain.

neeli - I think the nausea will go away for you. I too was nauseous in the first few weeks. The doc said it was the body adjusting to the new hormone. Went away after a few weeks and I’ve been on tamoxifen for over a year now and am doing fine re: no major side effects.

Also for those who are pre-menopausal, you might experience some irregularity in your cycle when you start tamoxifen and that’s totally normal. According to the oncologist and what happened to me in actuality, things hit a stride after around 6 months and if you’re not close to menopause, you period will be on a regular schedule again (for better or worse! I joked to my husband that the one SE I wouldn’t mind is no more periods! Alas, still very regular)

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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Feb 4, 2020 11:01PM Gardengirl72 wrote:

Hi all, I’ve been on Tamoxifen for 4 years now (one to go!!). I started at 10mg 2x a day and was ok for the first few years. Around the second year I stated experiencing horrible joint pain, like I was 90 with arthritis (I’m 47) . I read it’s one of the side effects and went off it for a month to see. Sure enough my joint pain disappeared after 2 weeks. I’ve taken a few breaks for a month at a time but always went back out of fear that I need this as a preventative. About a year ago I read a study that stated that they never tested women on the dosage for Tamoxifen, meaning it could work just as well at a lower dose with fewer side effects. So I made a decision and cut my dose in half and 99% of my side effects went away. I still get night sweats but not as severe. This was a personal choice and I did not tell my oncologist. My body my choice. Only one year to go!

Dx 1/2016, LCIS, Right, ER+ Surgery 1/20/2016 Hormonal Therapy 2/22/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 5, 2020 12:16AM PebblesV wrote:

Gardengirl72 that’s so interesting! I think I mentioned it earlier in this thread but not recently - so, I’m at half dose (10mg) which might be why I’m tolerating it well. So interesting to hear that 99% of your side effects went away when you cut your dose from 20 to 10mg! Maybe there is something to that because I’ve never experienced joint pain.

There are studies starting to come out re: a 5mg dose being just as effective for early stage as 20mg. I hope more will start to be done.

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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Feb 5, 2020 05:04PM Togethertolearn wrote:

I am considering trying 10mg of mine, I've been off my 20mg for over a month. I would like to see case studies, stories, from those who have taken tamoxifen but had it come back - all I see are stats not first hand accounts (I am leery of stats and like to process from personal experiences I hear). That's just me. Just like HPV for my kid, first hand accounts are what helped me make the decision about her receiving that vaccine or not.

Dx 4/2019, Right, <1cm, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Feb 20, 2020 07:18AM Cole2020 wrote:

Has anyone felt jittery on Tomixifen? I wake up maybe 2-3 hours after falling asleep and the jitteriness drives me crazy!

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