New and Nervous

blackroze1000
blackroze1000 Member Posts: 50
edited March 2014 in Breast Cancer #1
I have recently been diagnosed with Stage I breast cancer, thankfully with clean nodes. My doctor just told me he is submitting my cancer cells for a "Gene Profile Analysis," which will show whether or not I am a candidate for the pill Arimidex. If I am not, he suggests Taxotere and Cytoxan for my chemo -- 4 treatments (once every 3 weeks). Either way, I will have radiation after chemo. I was thrilled I may only have to take a pill instead of going through regular chemo, which I'm absolutely terrified of. I would need to take the pill for 5 years, and I would also have to be pushed into post-menopause by taking injections once a month for 3 years to "turn off" my ovaries (I am currently 45 and pre-menopausal). However, after doing some research on what Arimidex patients are saying about the drug, I am seriously starting to question this whole thing. I have read about terrible side effects. I know regular chemo is no walk in the park, but atleast it would be over and done with in 3 months or so, not 5 years. Has anyone else been faced with a similar situation? I go back to see the doctor for the results of the analysis on January 20th. Any feedback you could give me would be much appreciated. One thing I have already learned is that attitude is everything. So no matter what, I know my God is tougher than cancer. I will get through the ups and downs, especially because of people like you who care enough to support each other through all this. Thank you!
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Comments

  • teresa41
    teresa41 Member Posts: 471
    hi
    i dont know anything about arimidex but i did 4 treatments of taxotere and cytoxan and it wasnt all that bad for me but everyone is different. my cancer was stage 2 .i now take tamoxifen for 5 years and i was really scared about starting it but so far so good. im sure you will get lots of replys just remember you will find the strength to get through this!


    best of luck to you!

    :o) teresa
  • newbiefromcananda
    newbiefromcananda Member Posts: 234
    Hi I can't answer your
    Hi I can't answer your questions as my situation is differrent but I just wanted to welcome you to the site you are in a good place here and I am sure someone will be able to answer your questions take care, chin up ,and everything will be fine!(((Hugs))) Lisa
  • Ritzy
    Ritzy Member Posts: 4,381 Member

    Hi I can't answer your
    Hi I can't answer your questions as my situation is differrent but I just wanted to welcome you to the site you are in a good place here and I am sure someone will be able to answer your questions take care, chin up ,and everything will be fine!(((Hugs))) Lisa

    Just welcoming you too! I
    Just welcoming you too! I am sure someone with more info will post for you.

    Sue :)
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    Similar diagnosis, but different treatment
    Welcome, blackroze -

    My diagnosis sounds very similar to yours, but my doctor approached my treatment differently.

    My diagnosis was Stage 1, ER+/PR+/HER2-, no lymph node involvement. I'm also premenopausal (I'm 40). I had bilateral lumpectomies and sentinel node biopsies back in June. Chemo was optional for me, but I chose to do it, partly because I'm still so far from menopause, so have many estrogen-filled years ahead of me.

    I did the chemo regimen your doctor mentioned, 4 rounds of Cytoxan/Taxotere. Then 33 radiation treatments, which I just completed last week.

    I'm now on Tamoxifen, which is an estrogen blocker given to premenopausal women, also for 5 years. Arimidex is not chemo, it's an estrogen blocker given to postmenopausal women, which is why you would have to have Lupron injections to shut down your ovaries and put you into menopause before you could take it.

    But I'm curious why you can't just take Tamoxifen instead of Lupron injections + Arimidex? There are some possible reasons, but that's definitely a question for your doctor, if you haven't already discussed that.

    I'm very glad you found us -- you won't find better sources of support and wisdom than the women and men on this board. Please ask any and all questions you have.

    Traci
  • blackroze1000
    blackroze1000 Member Posts: 50
    TraciInLA said:

    Similar diagnosis, but different treatment
    Welcome, blackroze -

    My diagnosis sounds very similar to yours, but my doctor approached my treatment differently.

    My diagnosis was Stage 1, ER+/PR+/HER2-, no lymph node involvement. I'm also premenopausal (I'm 40). I had bilateral lumpectomies and sentinel node biopsies back in June. Chemo was optional for me, but I chose to do it, partly because I'm still so far from menopause, so have many estrogen-filled years ahead of me.

    I did the chemo regimen your doctor mentioned, 4 rounds of Cytoxan/Taxotere. Then 33 radiation treatments, which I just completed last week.

    I'm now on Tamoxifen, which is an estrogen blocker given to premenopausal women, also for 5 years. Arimidex is not chemo, it's an estrogen blocker given to postmenopausal women, which is why you would have to have Lupron injections to shut down your ovaries and put you into menopause before you could take it.

    But I'm curious why you can't just take Tamoxifen instead of Lupron injections + Arimidex? There are some possible reasons, but that's definitely a question for your doctor, if you haven't already discussed that.

    I'm very glad you found us -- you won't find better sources of support and wisdom than the women and men on this board. Please ask any and all questions you have.

    Traci

    Thanks, Traci
    Thanks for clearing up my misconception about Arimidex -- I swear half the time things go right over my head when the doctors start talking, even with me writing things down! He did mention that I was not able to go on Tamoxifen because I had a stroke many years ago. I am curious to know how you reacted to the chemo, if you don't mind sharing. I've been through radiation before due to a different cancer I had about a year and a half ago, which is not related to breast cancer. (I should have been named "Lucky," right?) With that cancer, I did not need to have chemo, so I'm kinda clueless as to what to expect.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member

    Thanks, Traci
    Thanks for clearing up my misconception about Arimidex -- I swear half the time things go right over my head when the doctors start talking, even with me writing things down! He did mention that I was not able to go on Tamoxifen because I had a stroke many years ago. I am curious to know how you reacted to the chemo, if you don't mind sharing. I've been through radiation before due to a different cancer I had about a year and a half ago, which is not related to breast cancer. (I should have been named "Lucky," right?) With that cancer, I did not need to have chemo, so I'm kinda clueless as to what to expect.

    So much to learn!
    I think every one of us here has had the experience of leaving a doctor's appointment and not remembering a single thing he/she said -- so, if you're getting half, you're doing very well!

    I see now why your doctor's recommending against Tamoxifen -- I'm glad he's being diligent about taking your medical history into account.

    One additional thing from your first post: The gene profile analysis your doctor's talking about is probably the Oncotype DX test. If that's the case, the Oncotype test is generally used to determine whether or not you would benefit from chemo, NOT to decide whether or not to take an estrogen blocker.

    While some women do decide not to take Tamoxifen, Arimidex, or another one of the estrogen blockers, the standard of care after active treatment for breast cancer is to take one (whichever one your doctor determines is appropriate for you) for 5 years, regardless of whether or not you do chemo.

    One of the most frustrating things about chemo is that every woman reacts so differently, even on the very same chemo cocktail, and there's no way to predict side effects -- you really have no idea how you'll do until you get through your first round.

    My side effects on Cytoxan/Taxotere were very middle of the road -- there are women on this board who did much better than me on it, and those who did much worse than me on it.

    What I CAN encourage you, though, is not to be terrified of chemo. Chemo is not like it used to be, or like what you see on TV -- there's no reason to suffer anymore through horrific side effects, they have drugs now for everything (except hair loss), and most oncologists are ready and willing to prescribe whatever you need. Chemo isn't fun, but it's do-able, and manageable.

    Hope that helps,

    Traci
  • blackroze1000
    blackroze1000 Member Posts: 50
    TraciInLA said:

    So much to learn!
    I think every one of us here has had the experience of leaving a doctor's appointment and not remembering a single thing he/she said -- so, if you're getting half, you're doing very well!

    I see now why your doctor's recommending against Tamoxifen -- I'm glad he's being diligent about taking your medical history into account.

    One additional thing from your first post: The gene profile analysis your doctor's talking about is probably the Oncotype DX test. If that's the case, the Oncotype test is generally used to determine whether or not you would benefit from chemo, NOT to decide whether or not to take an estrogen blocker.

    While some women do decide not to take Tamoxifen, Arimidex, or another one of the estrogen blockers, the standard of care after active treatment for breast cancer is to take one (whichever one your doctor determines is appropriate for you) for 5 years, regardless of whether or not you do chemo.

    One of the most frustrating things about chemo is that every woman reacts so differently, even on the very same chemo cocktail, and there's no way to predict side effects -- you really have no idea how you'll do until you get through your first round.

    My side effects on Cytoxan/Taxotere were very middle of the road -- there are women on this board who did much better than me on it, and those who did much worse than me on it.

    What I CAN encourage you, though, is not to be terrified of chemo. Chemo is not like it used to be, or like what you see on TV -- there's no reason to suffer anymore through horrific side effects, they have drugs now for everything (except hair loss), and most oncologists are ready and willing to prescribe whatever you need. Chemo isn't fun, but it's do-able, and manageable.

    Hope that helps,

    Traci

    Traci, you're awesome!
    You seem so knowledgable about everything, and I seem so in the dark it's almost embarrassing. I better start asking the right questions of my doctor (and REALLY start paying attention) before I begin anything. I feel like my head is spinning! Thanks, again, for all your information. Everything you are telling me is truly helpful . . .

    And a big thank you to everyone who has welcomed me to this site. It's so nice to know I have somewhere to turn!
  • crselby
    crselby Member Posts: 441

    Traci, you're awesome!
    You seem so knowledgable about everything, and I seem so in the dark it's almost embarrassing. I better start asking the right questions of my doctor (and REALLY start paying attention) before I begin anything. I feel like my head is spinning! Thanks, again, for all your information. Everything you are telling me is truly helpful . . .

    And a big thank you to everyone who has welcomed me to this site. It's so nice to know I have somewhere to turn!

    for more information...
    Please pick up a book or two from your local book store about breast cancer. Two of my doctors gave me information pamphlets everys step of the way and the other two did not. The first doctor, my family practitioner, who was the one to tell me I had breast cancer, knew less about it than I did at that point because, since the biopsy, I had been reading, reading, reading, about all the possible results the biopsy could show. Knowledge is power!
    ~~Connie~~
  • blackroze1000
    blackroze1000 Member Posts: 50
    crselby said:

    for more information...
    Please pick up a book or two from your local book store about breast cancer. Two of my doctors gave me information pamphlets everys step of the way and the other two did not. The first doctor, my family practitioner, who was the one to tell me I had breast cancer, knew less about it than I did at that point because, since the biopsy, I had been reading, reading, reading, about all the possible results the biopsy could show. Knowledge is power!
    ~~Connie~~

    Thanks, Connie!
    I think that's a great idea -- I was planning on going to the bookstore tomorrow anyway, so I will definitely look into this. I haven't received anything from any of my doctors so far, which isn't particularly comforting.
  • roseann4
    roseann4 Member Posts: 992 Member

    Thanks, Connie!
    I think that's a great idea -- I was planning on going to the bookstore tomorrow anyway, so I will definitely look into this. I haven't received anything from any of my doctors so far, which isn't particularly comforting.

    I'm taking Arimidex.
    Sounds like you are much younger than I am. I'm 59 so I did not need to have injections to shut down my ovaries. From what I have read, most pre-menapausal women are getting tamoxifen which does not require injections. I am having no obvious side effects except mood swings which bother my husband more than they bother me. The biggest risk with Arimidex is bone loss which they can control with medication. My cancer was Stage 1, ER+ with no lymph node involvement. I had breast conserving surgery which is more than a lumpectomy but leaves the breast intact. I also had radiation. Based on the results of the OncoTypeDX test results, I did not have chemo but will take Arimidex for at least 5 years. I have read everything I can get on breast cancer. If I had been pre-menapausal, I think I would have opted for the chemo rather than 5 years of Arimidex. I'm not a medical professional so if you are not sure, get a second opinion.

    Roseann
  • pgrace35
    pgrace35 Member Posts: 122
    Welcome
    I did not not take Arimidex and don't know much about it, I did the chemo 4 times. No, it's not a walk in the park, but it does go quickly and your body is a amazing thing and starts to recover within in weeks of your last treatment. The hair is a bit slower process. I have been done for 6 weeks with chemo and my hair is just starting to come in "peachfuzz", but I feel good. Now on radiation. As for the drug you would have to take for 5 yrs instead, personally, I would do the chemo, but that is just me. I'm not a big drug person, and side effects scare me for that length of time. Though chemo has many side effects they do go away and your not getting it everyday. Good diet,lots of water, exercise and attitude are key for getting through this treatment. You also have a wonderful support system here with any questions, it has been so helpful to me and continues to be. Good luck with you decision.
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member

    Traci, you're awesome!
    You seem so knowledgable about everything, and I seem so in the dark it's almost embarrassing. I better start asking the right questions of my doctor (and REALLY start paying attention) before I begin anything. I feel like my head is spinning! Thanks, again, for all your information. Everything you are telling me is truly helpful . . .

    And a big thank you to everyone who has welcomed me to this site. It's so nice to know I have somewhere to turn!

    No reason to be embarrassed!
    Eight months ago, I was exactly where you are in terms of feeling overwhelmed with information and new vocabulary and medical concepts that made no sense at first....please don't feel embarrassed, it takes time to absorb not only your diagnosis, but also all the information being thrown at you. Take it slow, don't let ANYBODY rush you into any decision, ask all the questions you want -- more than once, if you need to!

    One thing I strongly suggest (if you haven't already done it) is to call the ACS' 800-number and ask them for their packet of information for those who are newly diagnosed with breast cancer. It's entirely free of charge, the people I've spoken with there are so understanding and compassionate, and the box FULL of booklets and materials they sent me was so, so helpful.

    Most of the ACS' materials are also on their website, but I found it comforting to have tangible booklets and pamphlets by my bed when I woke up in the middle of the night, to carry in my bag to read in waiting rooms, etc.

    Traci
  • MyTurnNow
    MyTurnNow Member Posts: 2,686 Member
    Welcome, blackrose. I
    Welcome, blackrose. I haven't been on all weekend and just read your post. I am a little older than you, 55, but did take the same chemo cocktail you may take. I was one of the "lucky" ones and didn't have many side effects. I did notice a difference in tastebuds for a while after each infusion and did have some bone pain but that was from the Nuelasta shot. It wasn't that bad and I easily controlled it with Tylenol. I also had 34 radiation treatments and just finished them Christmas Eve. I will take Arimidex for 5 years because I am ER/PR+ and I am postmenopausal. I haven't started this treatment yet but am hopeful that the side effects are minimal. You can do whatever is necessary and you've come to the right place for support and caring people. Keep us posted on your treatments and we'll be there with you every step of the way.

    I, too, was very uneducated when I received my diagnosis in June 2009. Thanks to this board and the wonderful women, I have learned volumes.
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    MyTurnNow said:

    Welcome, blackrose. I
    Welcome, blackrose. I haven't been on all weekend and just read your post. I am a little older than you, 55, but did take the same chemo cocktail you may take. I was one of the "lucky" ones and didn't have many side effects. I did notice a difference in tastebuds for a while after each infusion and did have some bone pain but that was from the Nuelasta shot. It wasn't that bad and I easily controlled it with Tylenol. I also had 34 radiation treatments and just finished them Christmas Eve. I will take Arimidex for 5 years because I am ER/PR+ and I am postmenopausal. I haven't started this treatment yet but am hopeful that the side effects are minimal. You can do whatever is necessary and you've come to the right place for support and caring people. Keep us posted on your treatments and we'll be there with you every step of the way.

    I, too, was very uneducated when I received my diagnosis in June 2009. Thanks to this board and the wonderful women, I have learned volumes.

    I want to welcome you too
    I want to welcome you too blackrose! I was lucky that I didn't have to take chemo. I wish you the best of luck with it. You will have a great support system to help you.

    Debby
  • blackroze1000
    blackroze1000 Member Posts: 50
    DebbyM said:

    I want to welcome you too
    I want to welcome you too blackrose! I was lucky that I didn't have to take chemo. I wish you the best of luck with it. You will have a great support system to help you.

    Debby

    Thanks for cheering me on!
    You guys are great! You're a wealth of information and support. I feel blessed to have found you. I also just went to the bookstore and purchased "Breast Cancer for Dummies." I think the title says it all!! =) My name is Elaine, by the way. I'm not used to giving it out, but I feel I'm among friends . . .
  • DianeBC
    DianeBC Member Posts: 3,881 Member

    Thanks for cheering me on!
    You guys are great! You're a wealth of information and support. I feel blessed to have found you. I also just went to the bookstore and purchased "Breast Cancer for Dummies." I think the title says it all!! =) My name is Elaine, by the way. I'm not used to giving it out, but I feel I'm among friends . . .

    Hi Elaine!
    I am glad that you feel comfortable on here. You should! This is a great group of bc survivors that offer support and encouragement. I like that book. I need to buy it. lol

    Good luck to you!

    Hugs, Diane ♥
  • LadyParvati
    LadyParvati Member Posts: 328

    Thanks for cheering me on!
    You guys are great! You're a wealth of information and support. I feel blessed to have found you. I also just went to the bookstore and purchased "Breast Cancer for Dummies." I think the title says it all!! =) My name is Elaine, by the way. I'm not used to giving it out, but I feel I'm among friends . . .

    Welcome!
    Hi, Elaine!

    It's all so overwhelming at first, but as you do more reading and ask more questions, you'll begin to feel more like you understand things and more in control of your life. I'd recommend the book *Dr. Susan Love's Breast Book*, as it explains a lot of the technical stuff in easier-to-understand language, and it will help you know more about what questions you need to be asking.

    Also--a friend recommended something that turned out to be a life-saver for me--to take someone with me to my doctor's appointments who can be a note-taker. Or you might take an audio-recorder. Having another less emotionally involved person there to take notes was most helpful to me, though, because she also helped me remember important questions and thought of good questions to ask on the spot. She ended up producing a 37-page document in table form with all of the info we gleaned from the doctors! It was sooooo helpful!

    Hang in there--the roller coaster ride will slow down soon!

    Sandy
  • blackroze1000
    blackroze1000 Member Posts: 50
    Bringing someone with
    I've been bringing my hubby with me to my appointments, but I swear the doctor talks so fast, you have to know shorthand. Next time I go in (January 20), I'm just going to have to ask him to slow down a bit. Too much information! I'm going in with questions this time, too. Last time I didn't know what to ask, so when he asked if I had any questions, I didn't know what to say except "Did they get it all during the surgery?" Of course, the answer was to the best of their knowledge, but because they really don't know if all those little buggers are gone in my body, I may have to go through chemo. I'll just have to wait for the test results to see what the poop is. Ah, the waiting game -- there's nothing like it. Ugh! But since then, to keep my sanity, I've been focusing on my daughter's birthday (she's 12 today). However, after this, it's going to be a long 6 days. I'll just keep reading my book for more info, writing my questions down for the next appointment, and thinking positive thoughts!!

    Elaine
  • susie09
    susie09 Member Posts: 2,930

    Bringing someone with
    I've been bringing my hubby with me to my appointments, but I swear the doctor talks so fast, you have to know shorthand. Next time I go in (January 20), I'm just going to have to ask him to slow down a bit. Too much information! I'm going in with questions this time, too. Last time I didn't know what to ask, so when he asked if I had any questions, I didn't know what to say except "Did they get it all during the surgery?" Of course, the answer was to the best of their knowledge, but because they really don't know if all those little buggers are gone in my body, I may have to go through chemo. I'll just have to wait for the test results to see what the poop is. Ah, the waiting game -- there's nothing like it. Ugh! But since then, to keep my sanity, I've been focusing on my daughter's birthday (she's 12 today). However, after this, it's going to be a long 6 days. I'll just keep reading my book for more info, writing my questions down for the next appointment, and thinking positive thoughts!!

    Elaine

    Happy birthday to your
    Happy birthday to your daughter Elaine! And, keep thinking positive!

    ♠♣ Susie ♠♣
  • Dot53
    Dot53 Member Posts: 239 Member
    I just began taking Arimidex
    I just began taking Arimidex this week and am supposed to take it for 5 years. I didn't really want to after hearing about all of the side effects but am afraid not to. I spoke to my general practioner about the drug and my concerns as he is also a pharmacist and he said to try it on a trial basis and to ask the onocologist about the long range studies of the drug. He also felt that two years on this drug was long enough... so we'll see what happens... so far no side effects but I have only been on the drug for 3 days..

    Best wishes,
    Dot