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Topic: Side effects from Raloxifene for LCIS

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jun 24, 2020 03:20PM

AuntieY wrote:

After a few months on Raloxifene I developed a sore throat which now I've had for 6 months. More recently I had a mysterious rash on different parts of my body. To test to see if these two conditions are because of Raloxifene I have not taken it for 3 weeks. Has anyone else experienced this? I will see the oncologist next week. The rash is gone but the sore thoat remains. Is there another medication for LCIS I could try? I don't like to be doing nothing. I'd appreciate any thoughts. This is the first time I've posted. Thank you

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Jun 25, 2020 08:48AM - edited Jun 25, 2020 09:19AM by Lea7777

AuntieY, a 6-month sore throat is awful. Glad the rash has subsided.

Good thing you are checking in with your oncologist. I am not familiar with the side effects you mention, but everyone is different.

Is there another medication for LCIS I could try? If you are on Raloxifene, that tells me you are post-menopausal.That means there are 5 drugs you can take.

1. Raloxifene

2. Tamoxifen-now a low dose 5mg is being subscribed, instead of 20 mg. Some docs prefer the other drugs for post-menopausal women with a uterus due to the slight increase in uterine cancer risk with Tamoxifen.

Raloxifene and Tamoxofen are both SERMs. Selective Estrogen Receptor Modulators.

Then there are the Aromatase Inhibitors (AIs), which block estrogen closer to the source and don't just modulate it. They are available only to post-menopausal women; In no particular order:

3. Examastane/Aromasin

4. Letrozole/Femara

5, Anastrozole/Arimidex

I don't like to be doing nothing. You can increase your surveillance, which is not "nothing." This 2017 study shows about 10% of women with high risk breast conditions take the drugs. The purpose of the study is actually to find ways to increase the uptake.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5460136/

I've read other figures like 1 in 7, so it's definitely a minority who take the drugs.

Of women who do take the drugs (whether to decrease the chance of recurrence or as prevention when high risk conditions are present), many studies show as low as a 50% compliance rate for the full 5-year duration. I have references on those studies if you'd like.

I have tried several drugs and have rejected some for intolerable side effects, having settled on Raloxifene for my LCIS and other atypia issues--for now. So I am not anti-drug, but I do find this fact very interesting: These drugs do prevent breast cancer, but have not shown a decrease in mortality from breast cancer.

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Chemoprevention works against breast cancer, but these drugs are not popular

By Ranit Mishori and LaTasha Seliby February 16, 2015

Kenneth Lin, a family physician at Georgetown University who worked on developing the task force's SERM guidelines, notes that while SERMs may have reduced new cases, they "have not been shown to reduce breast cancer mortality in any study or meta-analysis." One possible explanation, he says, is that "these drugs are effective at preventing nonlethal cancers rather than the more serious ones."

Above is from a Washington Post article.

https://www.washingtonpost.com/national/health-science/chemoprevention-works-against-breast-cancer-but-these-drugs-are-not-popular/2015/02/16/8c58a702-9ce9-11e4-a7ee-526210d665b4_story.html

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Breast Care (Basel). 2015 Apr; 10(2): 141–142.

Published online 2015 May 7. doi: 10.1159/000430877

Aromatase Inhibitors in the Prevention of Breast Cancer

Elmar Stickeler, Chair,a,*,* Tanja Fehm, Participants,b Florian Schütz,c and Marc Thilld

Author information Copyright and License information Disclaimer

This article has been cited by other articles in PMC.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC44640...


Excerpts (I've added the CAPS and underlines)

...women at high risk for breast cancer had a significant benefit in the prevention of breast cancer from tamoxifen: After 20 years, tamoxifen led to a 29 % reduction in overall incidence of breast cancer compared with placebo. Of note is the fact that NO REDUCTION IN BREAST CANCER MORTALITY and even an increase in estrogen receptor (ER)-negative breast cancers was observed.

The key messages of this trial are: 1. less breast cancer INCIDENCE WITHOUT ANY BENEFIT FOR OVERALL SURVIVAL. However, it was difficult to show a benefit in overall survival due to the very effective medical and surgical intervention in breast cancer patients. 2. Tamoxifen has some severe side effects that may influence patients' compliance. 3. We have seen higher incidence of some cancer disease and deaths in the tamoxifen treated group.


In the IBIS-II trial, anastrozole significantly reduced the incidence of breast cancer after a median follow up of 5 years: 40 women in the anastrozole group (2 %) and 85 in the placebo group (4 %) developed breast cancer. In the MAP.3 trial, exemestane reduced the incidence of all breast cancers by 53 % after a median follow-up of 3 years. But again, both studies FAILED TO SHOW DIFFERENCES IN THE BREAST CANCER RELATED MORTALITY between the groups treated with AI and placebo.

As shown in the IBIS-II trial with anastrozole or in the MAP.3 trial with exemestane, the risk of breast cancer in postmenopausal women with an increased risk of breast cancer was relatively decreased by 65% and 60%, respectively. There was no significant reduction in breast cancer mortality.

AI reduced high-grade tumors more effectively than low-grade tumors.

It seems that both tamoxifen as well as AI are able to prevent breast cancer WITHOUT A BENEFIT IN OVERALL SURVIVAL.

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C)

Back to Raloxifene....

Recent 2020 study:

Breast Cancer Characteristics and Survival among Users versus Nonusers of Raloxifene

https://pubmed.ncbi.nlm.nih.gov/31796465/

Excerpt: predicted survival was higher in users than nonusers (8-year survival 84.9% vs. 83.4%).

Statistically significant and a trend in the right direction, but I am not shouting from the rooftops, as a user of Raloxifene.


Good luck to you AuntieY

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Jun 25, 2020 08:55AM Lea7777 wrote:

Here's a post on some different docs' views on AIs and SERMs.

https://community.breastcancer.org/forum/95/topics/864646?page=1#idx_26

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Jun 28, 2020 11:47AM AuntieY wrote:

Thank you so much Lea. I hope the reason I have a sore throat isn’t due to Raloxifene. My rash is gone. Maybe both The rash and sore throat aren’t connected although both are listed as side effects of Raloxifene. I hope the oncologist has some answers. I would like to stay on this drug if I can.i see the oncologist on Wednesday. My age is part of the equation since I am 78. Both my mother and daughter had invasive breast cancer. Again, thanks for the information

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Jun 28, 2020 01:58PM Lea7777 wrote:

Good luck to you AuntieY and let us know what your oncologist thinks. Hope your mother and daughter were able to recover from breast cancer.

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Jul 7, 2020 02:39PM AuntieY wrote:

Hi, Lea.

The oncologist and I decided that I should stay off Ralaxifine until after I see an ENT doctor. If the ENT doctor thinks my sore throat is due to something else I will go back on it, but will try Evista instead of the generic. My appointment with the ENT isn't until the end of July because iti's hard to get into a doctor's office due to the pandemic so that's where I stand now. My daughter had invasive bc 7 years ago and had very stong chemo. She is fine. My mother, it was a different time and there weren't many choices, lived for 16 years after her mascectomy. She died at 88. With bc in the family my daughter had the dna genetic test for bc, and she didn't carry the gene, even so she got bc. Take care and thank you.



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Jul 7, 2020 06:37PM Lea7777 wrote:

AuntieY,

Your mother lived a long time and I'm glad your daughter recovered. Good luck at the ENT. You take care too.


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