Double Negative Breast Cancer and Femara

ladydi1
ladydi1 Member Posts: 120
edited March 2014 in Breast Cancer #1
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
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Comments

  • Alexis F
    Alexis F Member Posts: 3,598
    Hi Diana
    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
    susie09 Member Posts: 2,930
    Alexis F said:

    Hi Diana
    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♥

    Not much help :(
    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
    phoenixrising Member Posts: 1,508
    Diana, I haven't tried
    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
    ladydi1 Member Posts: 120

    Diana, I haven't tried
    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

    Femara
    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
    Noel Member Posts: 3,095 Member
    ladydi1 said:

    Femara
    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

    Ladydi, want to wish you
    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
    phoenixrising Member Posts: 1,508
    ladydi1 said:

    Femara
    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

    Diana, I got a little
    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
    Kylez Member Posts: 3,761 Member

    Diana, I got a little
    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

    Hi LadyDi. It is good to
    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
    ladydi1 Member Posts: 120

    Diana, I got a little
    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

    Double Negative cancer
    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
    ladydi1 Member Posts: 120
    Kylez said:

    Hi LadyDi. It is good to
    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 ♥

    Thanks!
    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
    ladydi1 Member Posts: 120
    ladydi1 said:

    Double Negative cancer
    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

    One More Study Result on ER+ PR--
    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
  • phoenixrising
    phoenixrising Member Posts: 1,508
    ladydi1 said:

    Double Negative cancer
    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

    Thank you for bringing that
    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
    Ritzy Member Posts: 4,381 Member
    I have read where some have
    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
    ohilly Member Posts: 441
    Femara, double negative
    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
  • Derbygirl
    Derbygirl Member Posts: 198
    I'm weakly ER+, PR- and
    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
    lolad Member Posts: 670
    Derbygirl said:

    I'm weakly ER+, PR- and
    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.

    Could someone
    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
  • Moopy23
    Moopy23 Member Posts: 1,751 Member
    ladydi1 said:

    Double Negative cancer
    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

    Please Think of Your Audience
    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
    ladydi1 Member Posts: 120
    Moopy23 said:

    Please Think of Your Audience
    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.

    I am so sorry
    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
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    ohilly said:

    Femara, double negative
    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

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

    Let us know how you continue to do Ladydi!
  • susie09
    susie09 Member Posts: 2,930
    ladydi1 said:

    I am so sorry
    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

    Please do not go. This
    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 ♠♣
  • arbojenn
    arbojenn Member Posts: 118
    I am "double negative, too."
    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!