Changing to AI/OS from Tamoxifen after reviewing SOFT study?

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  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited November 2015

    Cryan, I want to make sure you understand your low oncotype score is designed to give an indication of whether or not you can forgo chemo, but it assumes you are taking hormone therapy. Be sure to talk to your MO about the side effects and see if he/she can help before making any decision to quit.

    Lala, Kadyann, taking tamoxifen for a few years and then switching to an AI is one of the more recent recommendations, and I think they have found that with doing tamoxifen a few years and then AI improves overall survival, but mitigates that added risk. But Kadyann, I can't answer the question about weakly positive, except I do know someone who is weakly positive, and her onc also believes that positive is positive.

    Good luck, Steph. I hope you have a smooth recovery.

  • DiDel
    DiDel Member Posts: 1,329
    edited November 2015

    I have what may be a stupid question...I am 49 and my ovaries are still going strong.. chemo didn't stop my periods...tamoxifen didn't stop them..i just had horrible side effects but not the usual ones to give an indication the drug was working. I stopped tamoxifen after 3 years. I recently was diagnosed with a recurrence that has not been fully staged etc since I have not yet met with my MO.

    Anyhow, my BS did not think tami was working so is now recommending Zoladex and AI's. Do I have to be in menopause before starting the AI's? Will they stop the Zoladex after a few months if I don't go into menopause. I just feel like my ovaries do NOT wanna quit and I am afraid even the zoladex won't work.


    Diane

  • fizzdon52
    fizzdon52 Member Posts: 568
    edited November 2015

    Hi DiDel, I had Zoladex injections monthly, and Letrozole. The Zoladex stops periods and puts you into chemical menopause (I think), allowing you to take an AI. Sadly I couldn't tolerate the Letrozole so am now on Tamoxifen. But as far as I know I am still in menopause. From what my Doctors told me if I had stayed on Letrozole, I would have had to continue the Zoladex injections.

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited November 2015

    Hi, DiDel. Same situation here. I was on tamoxifen and had a local recurrence. I was still having regular periods. The Zoladex or Lupron suppresses the ovaries so you can safely take one of the AIs, but you get the shot monthly to keep you suppressed. The issue I am running into is they are not quite sure when you are in menopause naturally. I'm kind of weighing whether to have my ovaries out and be done with that or continue the shots. Not particularly interested in yet another surgery but I'm 54 and according to my FSH levels no sign of menopause and this is after chemo and two years of shots. Seems unlikely but here I am.

  • DiDel
    DiDel Member Posts: 1,329
    edited November 2015

    thanks ladies...I'm dreading this especially since I just watched a video on how the shot is administered.



  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited November 2015

    the Lupron shot is wayyyyy easier than zoladex. And you can take it every three months

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited November 2015
    I agree, Tresjobli. Zoladex is not horrible in relation to other stuff we've all done, but I do agree that Lupron is an easier shot. I started on Zoladex and then they switched me to Lupron. It doesn't really hurt at the time or later. So get Lupron if you can, although my current insurance won't pay for the 3 month shot.
  • fizzdon52
    fizzdon52 Member Posts: 568
    edited November 2015

    Zoladex injections are too bad, I did them myself every month, you get used to it and they don't even hurt.

  • amyfsw
    amyfsw Member Posts: 58
    edited December 2015

    Hi - new here. Just finished surgery (April), 5 months of chemo (May- Oct) and 6 weeks of radiation and now moving on to drugs. Got big surprise this morning when my mo wants to do AI plus OS - no tamoxifen. I'm 47 and no period since 1 month into Chemo (last May). Had high (32) oncotype which is why chemo for my 1.2 cm stage 1 tumor. I'm considered pre-menopausal since still had period at diagnosis and cessation was caused by chemicals. She says new studies show that OS is essential and that AI is now the better way to go instead of starting on Tamoxifen and switching. But she said that if side effects are not good, she will change to Tamoxifen. She doesn't suggest oophorectomy unless bad effects of shots. So confused. really thought I'd go right to Tamoxifen and now have 2 weeks to decide what to do.....

  • readytorock
    readytorock Member Posts: 199
    edited December 2015

    Hi, Amy -

    I am very similar to you in age, etc. My MO and I decided to go with OS and AI instead of Tamoxifen. I did the shot for a while, but didn't want to have 10 years of shots every 28 days, so had an oophorectomy. I'm glad I did. My hot flashes aren't nearly as bad as they were. Bone loss may be an issue, but we are keeping an eye on it. Bone/joint pain was worse in the first few months, but my body has adjusted.

    Be well. Let me know if you have specific questions.

  • amyfsw
    amyfsw Member Posts: 58
    edited December 2015

    thanks Readytorock - hope I can figure this out quickly. I already have hot flashes, weight gain and tiredness from all the treatment - not sure it can get that much worse (we'll see....) might do ovary removal, not sure of that yet either - but I can figure that out later. Did your MO explain why AI? almost all the studies I'm reading say they are not sure about long-term outcomes for pre-menopausal women with AI as opposed to TMx switiching to AI later. I trusted MSKCC with chemo choices (after getting 3 opinions) and now wonder if I shouldn't question this too. But I hate the tension of deciding. ugh

    Amy

  • readytorock
    readytorock Member Posts: 199
    edited December 2015

    AMY -

    The SOFT study is why. I think it came out in January. There is a lot of information about it on these boards. Slightly better outcome than with Tamoxifen.

  • amyfsw
    amyfsw Member Posts: 58
    edited December 2015

    yes - I read study - thanks.

    A

  • atanea
    atanea Member Posts: 58
    edited June 2016

    I have been thinking about this issue (tamoxifen vs OS+AI), I have done Tamoxifen+Zoladex (OS) for 2 years and now I'm on Tamoxifen only for about 8 months. Leaving Zoladex was really good... shot pain was the least of my problems (some months later it didn't hurt at all), I didn't even knew how bad I was until recently. My life is now really much better. No bone pain, much better mood, no strong hot flashes, different sexual mood, have almost 0 SE with Tamoxifen (except ovarian cysts), although I'm not sure that's good news.

    I have discussed this with my onc. and talked about those studies. She says there aren't long term results and, also, that OS+AI is only an advantage to those woman who had a breast cancer that implied chemo. Mine didn't (although I didn't do the oncotype test and I had chemo sometime after, due to a second different cancer-leukemia), but I'm still thinking...As I have 0 SE with Tamoxifen I'm now afraid that it isn't working at all. I'm pre-menopause (38 y) and by now I have my periods almost every month. God knows what all this estradiol is doing. O_o We are never good aren't we?

  • JohnSmith
    JohnSmith Member Posts: 651
    edited December 2015

    The 2015 San Antonio Breast Cancer Symposium (SABCS) is wrapping up this weekend. It's a bit overwhelming to digest the data dump of breast cancer articles and videos. In this 7 minute summary video, Dr. Polly Niravath of Baylor College of Medicine discussed the SOFT / TEXT trials in a presentation called: "Adjuvant endocrine therapy: Is the price of forever too high?"

    ~4 minutes in, she discusses common side effects (toxicity) of ovarian suppression.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited December 2015

    Amy as I mentioned..I am doing OS and tamoxifen. My MO felt OS was essential, and also that given my age and menopausal status with a small tumor, tamoxifen was better than AI. She was concerned about bone loss. It's working for me so far. My mo and my OB both said I should Not have my ovaries removed, that they provide other health benefits

  • DiDel
    DiDel Member Posts: 1,329
    edited January 2016

    Hi all .., Happy New Year🎉🎉🎉🎉

    It's been a rough start to the year as I'm stressed thinking of what lies ahead for me.

    I was surprisingly diagnosed with a chest wall recurrence in November after much discussion and scans which were all clear...I've decided on Radiation therapy only to the tumor site incision which is approximately 4 " long and 2 " wide. They wanted to do whole breast ..sternum..supra clavicle and axillary nodes but I felt like that was overkill for a 5 mm tumor and negative nodes.that's being put off another month as I have 3 abscessed stitches that first must heal. I pray they heal so I can still have this treatment. I'm scared to do radiation but more scared not to.

    I am also going to be doing OS zoladex (I asked about Lupron mo said let's try this first) then he said I will do for 3 months before adding Aromasin. I'm honestly so depressed and can't stop crying over being in this situation , again. I felt like I was just getting back to life and feeling like myself after 8 reconstruction surgeries . Side effects of chemo and that horrible tamoxifen which failed me miserably . I hate the thought of my life on hold for another year as I heal and adjust to these new drugs. The only positive is that I have a very good team who all seem to understand quality of life and my mo promised me we would keep trying to find the right combination of drugs I can handle and still feel good. I am also thankful for everyone here who understands my feeling which I can't share with anyone else. I hope this combo of drugs does the trick and that the side effects are minimal . Sorry had to vent a bit


    Hugs to all that are struggling

    Diane

  • TwoHobbies
    TwoHobbies Member Posts: 2,118
    edited January 2016

    DiDel, I'm a recurrence too, and I will tell you that this will not put your life on hold for another year (if you're not doing chemo). I too, was just feeling all normal and had even lost 13 lbs when i went for my checkup and the recurrence was found. Damn tamoxifen didn't work for me either. I did do chemo, and that was hell, but the rest of the treatment for the recurrence was way easier than double mastectomy, major reconstruction. Radiation was quite easy for me and only eight weeks. Sure my skin started to peel the last week but two weeks post radiation I was vacationing in Aruba, wearing a swimsuit and swimming in salt water. Is the forced menopause and AI pleasant? Oh hell I'd rather not take them but I was going to hit menopause anyway, right? I get a little achy on the AI but exxxercise has helped that tremendously. I totally get that you are down and out about this. It sucks, its depressingto have to do this again. I just want you to know its a shorter bump in the road than you thought.

  • DiDel
    DiDel Member Posts: 1,329
    edited January 2016

    thanks two hobbies for the words of encouragement. I'm just up one day down the next but support from everyone here helps.n

    Diane

  • BethL
    BethL Member Posts: 286
    edited January 2016

    Diane- I too am now going to be doing os/ai or possibly having ovaries removed pending results of my genetic tests. I took tamoxifen for 5 years after my first diagnosis 10 yrs ago at age 38. Here I am again with a recurrence in sa me breast. MO said since I took tamoxifen and ended up with recurrence, ai was a better option. But of course with functioning ovaries, I would need suppression. He also is going to put me on prolia for bone loss prevention which has shown a 18% decrease in recurrence recently.so I'm happy about that. My oncotype is 21, tumor size .7mm and node negative. He felt like I would get more benefit this route than with chemo. I hope he's right. I really don't want chemo, but would of course if I thought it would help me.


  • DiDel
    DiDel Member Posts: 1,329
    edited January 2016

    Thanks BethL I am so not looking forward to any of this, I just had a bone density scan so I will find out if I will need prolia or Zometa

    I am waiting for incision to heal to start radiation . .another thing I'm not looking forward to.

    I hope it's not as hard of a transition as I'm imagining


    Diane

  • sugiesmama
    sugiesmama Member Posts: 8
    edited January 2016

    Yes -- was on Tamoxifen for about a month until my gynecologist found out. I've had two open myomectomies for large uterine fibroids and she thought Tamoxifen was too risky for me being pro-estrogen in the uterus. So, thanks to those studies, I've switched to Femara + Lupron injections. I'm only 1 month in, but it's going okay. Mild hot flashes and a bit of urinary stress incontinence (which is actually really awful). I am staying strong...

  • sugiesmama
    sugiesmama Member Posts: 8
    edited January 2016

    DiDel--

    I am so sorry you are going through this. I know how hard it is to be diagnosed AGAIN. I found the lump in my breast the DAY AFTER I finished radiation for sarcoma. And prior to that, I battled melanoma. It's a crazy, unfair life sometimes... but you can do it! So many of us have...

  • 7of9
    7of9 Member Posts: 833
    edited January 2016

    A word from the flip side: I was on Tamox for 3.12 years....orig stage 2b ER 95% - did neoadjunct chemo dose dense followed by BMX. clear sentinel nodes and margins. No rads. I now I have a recurrence in one (or more of the ALND) and as a bonus a new 5 cm fibroid tumor (never had fibroids before or they were too small to notice). I asked to have an ooph 3 years ago and they said No because I was BRC neg, Tam should cover you, you're half in menopause already. Now I have a double surgery scheduled in 2 weeks: ALND (Axillary lymph node removal - first round was clear sentinal nodes and clear margins....right) and I'm having an ooph (with fallopian tubes) and God willing my gyn will take the fibroid and uterus too. Get rid of all the unusable parts while you can before they kill you or add to your worries and problems! From here on in I just want the minimum....wish I could get my gallbladder and appendix too but I doubt they'll do it...you just watch me suggest it though....

  • Dakjo
    Dakjo Member Posts: 32
    edited January 2016

    I was on Tamoxifen for three months with few side effects (mainly hot flashes). However was recently diagnosed with a thickened endometrial lining - common side effect. Now will be requesting a switch to AI (with Lupron) as I consider (again) having my ovaries removed if I'm not post menopausal. Still hard for docs to tell with certainty. It has been almost a year since my last period and first chemo treatment. I have a similar feeling to yours that I may want the entire uterus removed to avoid later issues.

  • lala1
    lala1 Member Posts: 1,147
    edited January 2016

    Dakjo---I had it all taken...ovaries included. I'm 52 and was not anywhere near menopause when I had it done in Jan according to my hormone levels. But with thickened lining, cysts, fibroids and enlarged uterus (all not extreme but enough to make my doc sit up and take notice) we decided on the hysterectomy. I can honestly say it was one of my better decisions (don't tell my gyn! I fought it!). I feel really good and the only real SE I have is that I started having hot flashes and night sweats but they are under control and I usually have 1 or 1 during the day and 1 or 2 at night while I sleep. Weight is a little difficult to take off but that was the case before due to Tamoxifen. And the peace of mind is priceless!!


  • Dakjo
    Dakjo Member Posts: 32
    edited January 2016

    Thanks Lala. That's very helpful. Did your oncologist help with the decision or only your gynecologist?

  • lala1
    lala1 Member Posts: 1,147
    edited January 2016

    Just my gynecologist. I told my MO beforehand that we were thinking of doing it and then once I decided, I let him know. Then I had my Gyn send a report to him just so he'd have the info. He said my Gyn was a good one and knew what would be best for me.

  • weety
    weety Member Posts: 1,163
    edited January 2016

    I just finished my 5 years of femara, and onc seemed to be okay about stopping it since my DEXA scan showed my bones were being affected (anywhere from a 2-5% decrease) even though I had taken zometa back in 2010. Boy, did I do a happy dance the day I got to quit that crap! I'm feeling so much better!

    Now yesterday, just 3 months after stopping the femara, he has decided that it might be smarter for me to stay on it for another couple of years! What????????? He said I was in the gray area, but he definitely implied that if it was him or someone he knew, he would continue it, mostly because of my age (45). He has left the ultimate decision up to me.

    Here is my situation: Only weakly ER positive (10 percent); Hysterectomy/Ooph in 2010

    Femara affected me almost immediately, although I don't know how much was the femara and how much was the instant menopause from the hyster/ooph. Within 2-3 months, my cholesterol shot up 50 points; liver numbers ALT went up from 20-30; weight gain of 10 pounds (I know not much, but I was only 105 pounds before so that's a 10 percent increase. Plus I have been consistently 105 since my 20's, never fluctuating more than a pound or two.) Thryoid TSH shot up from under one to over two points (still within normal range). All of these numbers stayed pretty consistent to these through out the 5 years of femara, never going back down to my original numbers. I put up with the Joint stiffness and pain, as well as the terrible hot flashes and painful, dry sex, because I knew I had to!

    Now I don't know what to do! I don't want to go back on Femara, but I'm trying to figure out what I SHOULD do! I know the studies show 10 years of tamoxifen is better than 5, but what about femara, especially since my cancer was only weakly ER positive???

    Help!!!!


  • JWoo
    JWoo Member Posts: 1,171
    edited May 2016

    bumping for any new members or anyone with questions. Weety, did you ever get any clarification?


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