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The next step

SusieIM profile image
9 Replies

Hi Nice ladies,

I have been on Taxol but because of side effects decided to try something else. The neuropathy seems to be increasing with this. Doc agrees, suggested other options; Eribulin, Tamoxifen or Gemzar. I am leaning toward Tamoxifen but need to think about it. If you have any input I welcome it.

Sending virtual hugs,

Sue

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SusieIM profile image
SusieIM
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9 Replies
Yumibelle profile image
Yumibelle

I loved being on Tamoxifen as I had no SE’s. I got progression on it though after 2 years. I don’t know the other 2 drugs but other ladies here will. Have you asked you onc what will happen to you on each?

I wish you all the best

Hazelgreen profile image
Hazelgreen

When I was diagnosed with MBC in 2019, I insisted for several reasons to try tamoxifen. I had tolerated tamoxifen well for five years after being diagnosed with early breast cancer in 2006, and I did not want to experience new side effects with an unreasonably expensive drug such as Ibrance (recommended for me along with letrozole). My concern was quality of life for me, and cost to my health agency for others (38% of our provincial budget in Saskatchewan goes for health care!).

I've now taken tamoxifen for almost 17 months with positive scans so far. The first year, I took 40 mg. daily, and saw only tumour shrinkages so you might ask your physician whether this is a possibility for you. I'm due for another CT scan next month so may find out that 20 mg. is not enough for continued progress.

Good luck with the tamoxifen! The medical research I've been reading lately indicates that it is still the drug of choice for breast cancer in many parts of the world outside North America.

queeneee profile image
queeneee

Hello SusielM, I have recently changed from Faslodex and Verzenio to Tamoxifen because I found the side effects of F&V reduced my quality of life too much. (I took a month off everything to have an operation and I saw just how debilitated I had gradually become) I was first diagnosed in 2010 and did not take tamoxifen then. Diag. with stage4 one year ago... so I suggested tamoxifen to my Onc. she was happy to try this. I am on 20mg - so am interested to see the post below about 40mg. I feel great! I can tell that it is working on my bone mets, as my pain has gone again.. whether it is working on my liver.. we shall see in my scan in a couple of months. Good luck - you are in charge of your life.

SusieIM profile image
SusieIM in reply to queeneee

yes thank you for your response, good luck to you too, dear fellow warrior sending hugs

queeneee profile image
queeneee in reply to SusieIM

I wanted to add... I am not free of side effects (I always get joint pain for a while when I switch meds) and other menopausal stuff.. However I don't have the tiredness, brain fog and swelling, bowel swings (!) etc.. I had on the other meds.

PJBinMI profile image
PJBinMI

I've not been on any of the meds you mention, but since those include a hormonal med (tamoxifen) and chemos, I'm wondering what your cancer cell profile is regarding estrogen receptors and her2neu receptors. I'm not a medical professional but have been living with mbc for a long time and have learned all I can about bc, mbc, treatment, etc. If you have been on anti-estrogen hormonal treatment with each med doing well for awhile, I'd go with the Tamoxifen. When I was first diagnosed in 2004, alot of oncs would first prescribe Tamoxifen for women who were pre-menopausal or one of the non steroidal aromatase inhibitors (Femara/Letrozole or Arimidex) for post-menopausal women. IF those worked and then stopped working, they'd keep prescribing the hormonal meds until we'd run thru them all. First chemo usually used then would be either a taxane (taxol, taxotere or I can't think of the third, darnit) or Xeloda. Sometimes after running thru all the anti-hormonal drugs, if each had worked well for quite awhile, some oncs would put us on a low dose of estrogen for a bit to kinda "reset" the cancer cells and then go thru the already used anti-hormonal meds. Last time I saw a bc specialist onc for a second opinion, I asked about that and he told me that in his opinion, there are too many risks with the estrogen. Have you ever seen a bc specialist for a second opinion? That can be really helpful, esp when having to make big decisions about treatment.

SusieIM profile image
SusieIM in reply to PJBinMI

thank you for your feedback dear

Pbsoup profile image
Pbsoup

When I was on Tamoxifen for Stage 1, it tossed me into a very rough clinical depression. Totally debilitating. And totally out of the blue as I had never had depression before or since.

None of the doctors believed it was the Tamoxifen even though I sensed it was. In the end, I unilaterally decided to stop taking it, and the antidepressants I was on. The withdrawal was rough, but then I felt better--but now wonder if stopping the Tamoxifen contributed to my recurrence ...

Anyway, fast forward 10 years and my current Onc said that up to 10% of women end up with severe depression on Tamoxifen. This was the first time someone acknowledged what I suspected.

I am NOT telling you not to take it--on the contrary. The risk is relatively low, and depression is treatable.

I'm only mentioning it so if you find yourself with unexpected depressive symptoms, know it could be the drug. (This wasn't just the blues, it was full on misery.) Ironically, i think if someone had validated it could be the Tamoxifen, I might even have stuck with it. I just ended up feeling even crazier that no one believed me.

SusieIM profile image
SusieIM in reply to Pbsoup

Thank you Pbsoup, yes it really is good for me to be aware of possible side effects so thank you (hugs)

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