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Double Negative Breast Cancer and Femara

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

Hi. I have ER+ PR- Her2- breast cancer and have been on Arimidex for 1 year now since chemo and rads ended. I have had numerous problems on it and because of problems with blood clots lately my oncologist is switching me to Femara. Is there anyone on the boards that is a double negative and has switched from Arimidex to Femara? I feel like I may just be trading one set of bad side effects for another.
Thanks,
DianaLB

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Hi Diana. There are some survivors on here that I have seen posting that are on Femara. I

think one is Ohilly. I am sure they will see your post and respond. Good luck to you!
Lex♥

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Sorry I just saw this post Diana. I am not on Femara. I hope someone will post for you and tell you their experience. Best of luck to you!

♠♣ Susie ♠♣

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Diana, I haven't tried Femara but I went from Tamoxifen to Arimidex and now I'm on Aromasin and it's been the kindest to me. Have you considered taking an 81mg Aspirin to prevent clots if otherwise you are feeling OK with Arimidex? Everyone reacts so differently with these drugs. Best of luck to you
jan

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

Thank you all for replying. The oncologist has had me on aspirin since the blood clots started while taking Arimidex (1 yr.) I also had extreme bone pain, headaches, dizziness, sleeplessness and constantly tired, so she wants me to start Femara. My oncologist is leaving the country for one month starting today and had said if I had bad side effects with Femara to just call the nurse practicioner or doctor on call. This bothered me; so I have decided to quit all AI's for one month and give my body a chance to recover, before I make the decision to go back on or stop completely taking an AI for the next 4 years. I am tired of feeling 100 yrs. old, and being a double negative cancer, my chances of the AI's working is about half of what it is for someone ER/PR +. It is the old quality vs quanity of life question. Am I playing Russian Roulette with my cancer? I don't know. If any one has a similar type of cancer or has quit AI's because of the horrible side effects, I would love to hear from you.
Ladydi1

Noel's picture
Noel
Posts: 3101
Joined: Apr 2009

Ladydi, want to wish you good luck. Sorry for the problems you are having now. I know some have had trouble on the Arimidex.

♥ Noel

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Diana, I got a little confused when you called yourself a double negative but are ER+. I see what you're saying but you are ER+ and that's what the anti-estrogens are for. Tamoxifen and all the AI's are for ER+ regardless of the PR status and HER2 status. So the good news is your chances of the AI's working is the same for you as for anyone else with ER+ bc.

I took many breaks during Tamoxifen and Arimidex just to feel good for just a little while but now I take my Aromasin religiously and can't complain too much when I compare it with the others.

Best of luck to you
hugs
jan

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Hi LadyDi. It is good to see you posting again. I loved the poems you used to post. I haven't been on a hormone therapy drug yet. I wish you good luck!

♥ Kylez ♥

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

Hi Kylez, thanks! I finally wrote a book of poetry re my bc journey and it got published, so something good came from something bad.
Hugs,
Ladydi1

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

I am ER+ PR- Her2- (double negative) This is what the American Society of Clinical Oncologist reports about this type of breast cancer:
"The independent prognostive and predictive role of PR expression irrespective of ER has been a subject of great controversy as demonstrated by the report from the ATAC (Arimidex) adjuvant trial, a large worldwide trial comparing the efficacy of that of the aromatase inhibitor showing overall that patients with ER+/PR+ tumors had a lower recurrence rate than those with ER+/PR– tumors. Our study showed the triple negative subtype (ER/PR–, Her2–) has the worst overall and disease-free survival compared to the other subtypes" There was another study that said ER+ PR- cancers had only half the odds of AI's helping compared to ER+ PR+ cancers.
Ladydi1

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

Background: Hormonal based therapy has long been the mainstay for treatment of ER+ breast cancer. ER+ PR- disease is now known to exhibit different clinical behavior compared to ER+PR+ disease. Recent data indicate that ER+PR- disease is characterized by a lower response rate to estrogen deprivation, has a worse prognosis compared to ER+ PR+ disease, and may be dependent on other signaling pathways
Ladydi1

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009

Ladydi1,

As someone who was diagnosed with hormone and Her2/Nu negative breast cancer (that so-called "worst overall" group), I am upset by your post. It just confirms my decision to leave this board.

Out of context passages from clinical publications do not help anyone. My advice is to take the full article to your oncologist and question him or her.

Lisa H.

ladydi1's picture
ladydi1
Posts: 130
Joined: Jul 2008

Moopy I am so sorry and in no way meant to offend you but just seeking advice on my own situation given all the research I had read. I truly never meant to offend you or anyone else and you have my sincerest apologies. I would be happy to take myself off the boards before causing anyone else to leave.
Ladydi1

Moopy23's picture
Moopy23
Posts: 1753
Joined: Jan 2009
Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Haven't seen you posting LadyDi. Hoped everything was ok with you.

Kylez ♥

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Please do not go. This board is for opinions and help, whether different from ours or not. Your post might have offended someone, but, it might help someone too. I have seen a lot that I don't like either, and, I just choose to ignore it and to not respond. Ladydi1, you are an asset here, so, please stay. And, congrats on your publication!

♠♣ Susie ♠♣

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

.

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Hoping that LadyDi sees the posting from arbojenn!

Lex♥

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Are you leaving Moopy? Why?

Lex♥

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

LadyDi, please do not leave the board as a result of someone being insensitive. Your presence on this site is very welcomed and much appreciated as you can tell by the responses that you got on your posting here. I pray that all is well with you!

Kylez ♥

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Ladydi, where are you? I hope that you haven't left this board. I have read your poetry and I really love it. Post and let us know that you are doing ok.

Leeza

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Thank you for bringing that to my attention. I was told by my onc that my pr status wouldn't change my tx and that the pr status isn't considered. But maybe that was then and this is now. Soooo I had to find some info on this and although I'm not a clinician nor very savvy at reading studies it seems to me from this ASCO study that you may actually have more benefit than myself. This is the link:
Retrospective Analysis of Time to Recurrence in the ATAC Trial According to Hormone Receptor Status:

and this is part of the discussion at the end.

"In conclusion, in the ATAC trial adjuvant treatment with anastrozole resulted in a significant increase in TTR compared with tamoxifen in patients with hormone-sensitive tumors and these efficacy benefits were accompanied by tolerability advantages. Retrospective subgroup analyses reported here showed that TTR was longer for anastrozole- than tamoxifen-treated patients in both the ER+/PgR+ and the ER+/PgR– subgroups of patients, but the differential benefit was greater in ER+/PgR– tumors. These data are exploratory, should be considered hypothesis generating, and should be confirmed prospectively in other trials comparing the adjuvant use of an aromatase inhibitor with tamoxifen. Additional markers such as HER2 are being assessed to determine if these provide a mechanistic explanation for this finding."

If I have misread something....then my apologies. I hope you enjoy your drug free time off and start feeling better.
jan

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I have read where some have bad side effects with the hormone therapy drugs Diana. I am not on anything yet, so, I can't speak in the first person. I do wish you good luck and hope that you find something that works for you, but, with no or few se's.

Sue :)

ohilly
Posts: 446
Joined: Jan 2008

I have been on Femara since the beginning: my side effects were hair thinning, which was very, very upsetting to me and which I have dealt with by having a good cut and style to camouflage, as well as using a 'concealer' (it's called Toppik - they are natural hair fibers that you sprinkle on the thin spots and it covers it up very effectively). I also had severe depression which my oncologist agreed was caused by the Femara: I was crying every day for no reason, which I have never done in my life. I ended up taking Lexapro which has helped me greatly and totally gotten rid of the crying.

I think all these AIs have side effects, but I was able to deal with mine and personally, I would stay on the Femara no matter what to prevent recurrence.

I am also (strongly) ER positive and PR Negative, Her 2 negative. I have also read conflicting things about this: one that the PR status wasn't important, it's the estrogen that's important and predicts your response to the AIs, and information on the internet that talked about a worse response to AIs for this type of cancer. So I don't know what to believe, but since there's nothing I can do about it beyond what I am doing, I choose not to worry about it. I am also BRCA 1, and had a preventive mastectomy on the other breast.

What bugs me about the side effects of AIs is not that they exist, but that my oncologist never told me they would cause my hair to thin and get depressed.

Good luck and keep us posted,

Ohilly

survivorbc09
Posts: 4378
Joined: Jun 2009

Thanks for this info Ladydi. And, thanks Ohilly and Jan!

Let us know how you continue to do Ladydi!

Derbygirl's picture
Derbygirl
Posts: 198
Joined: Jul 2008

I'm weakly ER+, PR- and Her2-. I started on Femara and switched to Arimidex due to side effects and there was no difference. I continue on Arimidex to get whatever benefit I can to prevent recurrence as suggested by my Oncologist and Pathologist. Good luck with your decision.

lolad's picture
lolad
Posts: 671
Joined: Jun 2009

please give me a good website or tell me where to find out good info on tamoxifen. I am er pr strongly positive and pre menopausal and some of the things ive heard about this has scared me. I am also her +. Someone also told me that i will have to have a historectomy with taking the tamoxifen because im premenopaus and it has a high risk of ovarian cancer. Is this true? Im really confused and scared about this treatment and not sure what to do.
thanks
laura

arbojenn
Posts: 118
Joined: May 2009

Hi, Ladydi!
I also am er+, pr-, her-. My doctor started me on Femara three months before surgery to see how I responded. As mine was a recurrence on a reconstructed breast, a lot of the tumors were visible as well as palpable. I am pleased to say that within a month, I SAW the tumors start disappearing. I am a Femara fan forever!

I did experience some hot flashes, bone pain, and insomnia, but those are now diminishing. (Three months now: just had my surgery three weeks ago.) I encourage you to give Femara a try as your doctor suggested and stick with it for at least three months. Ask him/her if it is a good idea to let the Arimidex get out of your system before you try it so you can be sure you are attributing any problems you have to the Femara and not residual Arimedix. And be careful of the research you find on the Internet: most of it is outdated or the experiments were poorly run. An oncologist you trust is the best source for the latest research updates. (I am lucky: I have a brother who directs ovarian cancer research and as such keeps up on the breast cancer updates. Our "configuration" has proven to be very responsive to the AIs.) I wish Femara had been more widely used when I had my original cancer: I might not have had the recurrence.

Hang in there!

BunnyJane's picture
BunnyJane
Posts: 212
Joined: Jul 2009

who have provided more information regarding ER+, PR-, and Her2-. I also have this configuration. The more information that we share with on another, the better questions we can ask of our docs. I'm happy to learn from arbojenn that Femara worked well for her. I finish up chemo in 2 weeks (whheeww!) and will be on to the next stage of systemic treatment, so any and all information related to the effectiveness of hormone therapy for patients in this group is greatly appreciated.

BTW, I bought a copy of LadyDi's poetry book--- very good--- makes a good gift for our Sisters in Pink.

Jane

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Hi Jane! Congrats on being almost done with chemo. Where did you buy a copy of her poetry book, or, can you say on here?

Angie

I wrote too soon. I just went to LadyDi's blog site and the addy was there.

rjjj's picture
rjjj
Posts: 1826
Joined: Jan 2009

I will definetely check this out. I love poetry and will definitely want a copy of your book Di. I am also double neg. but I am neg for ER and Pr but pos. for Herceptin. There are sooo many different kinds of cancer and I know it feels good to talk to ones with the same kind as you (scary or not) I hope you find all the answers you need here. Sometimes we are just telling the truth and not trying to scare anyone. (we are scared enough ourselves!) I know I left out a few very scary things dealing with my rads and chemo and even the needle biopsy! but if we can't tell each other our fears and ask our questions, then where can we? Please post and let us know how you are.
love, Jackie

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

Yes, LadyDi, please stay and don't go. And, I will certainly check out your poetry book too.

♠♣ Susie ♠♣

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Jackie, LadyDi's blog is on her about me page. That is where the info about her poetry book is posted.

Angie

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

I checked out her blog and the information is on there for anyone that wants to know. Good luck again LadyDi!

♠♣ Susie ♠♣

survivorbc09
Posts: 4378
Joined: Jun 2009

Yes, I looked at LadyDi's blog and got the name of her poetry book too. LadyDi, I love your poetry too. Hope to read more of it!

Hugs

lanie940's picture
lanie940
Posts: 492
Joined: Jul 2009

I also am ER positive PR and HER negative. My oncologist gave me Arimidex to try. He did offer me Femara, but I said I'd try Arimidex first. I'll try them after my hernia surgery in 2 weeks. My risk factor goes down to 13% with the hormone therapy. I opted out on the Chemo since he said it would only change the percentages by 2 or 3% MAYBE. so that convinced me to go without chemo.

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