Results from SOFT trial? Tamoxifen

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grahaad1
grahaad1 Member Posts: 36


Anyone heard if preliminary results have been released from this trial?


http://clinicaltrials.gov/ct2/show/NCT00066690


I started Tamoxifen in September and continue to hear mixed opinions on whether I should be also getting Lupron type shots to supress my ovaries....other option is hysterectomy and an AI. My oncologist says I don't need the Lupron. Anxious to hear results from this study!

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013


    spoke with the researchers who are collecting the data. Preliminary results should be announced at the next ASCO annual meeting or shortly there after. It appears that there were fewer recurrences in the time frame so, they will be combining the data from SOFT and TEXT. Bottom line is that it might take a few more years to see statistical significance. Many of us over on the Stage 1, Grade 1, premenopausal thread are anxiously waiting the results.

  • grahaad1
    grahaad1 Member Posts: 36
    edited December 2013


    Thanks for the quick response!

  • tatasister10
    tatasister10 Member Posts: 52
    edited December 2013

    I take tamoxifen and lupron. There are mixed things about it online but my period came back within 6 months after chemo and my estrogen was sky high. I was er+ and my oncologist said I didn't need it (lupron) because I was stage 1 but also said that there have been some studies to show it helps and she went ahead and put me on it. I get the lupron shot every 2 months. I honestly have no problem at all with it. No mood swings, no weight gain, and my estrogen is now way down, so it gives me peace of mind. They say the most benefit is gained from taking it for 2 years after diagnosis. I've been on it for 2 years, and aside from the hot flashes at 27 years old, its totally doable. I can't wait to hear the results from the soft and text trials. 

  • grahaad1
    grahaad1 Member Posts: 36
    edited December 2013

    I am anxious for the results and worried that I should be taking Lupron. My period was back two months after chemo, and I am 30 so guessing my estrogen is pretty high.  My oncologists at md Anderson and at home both said I don't need lupron. 

  • gildedcage
    gildedcage Member Posts: 139
    edited December 2013

    I started Lupron about 5 months ago to protect my ovaries during chemo. I had my last shot about three weeks ago. I'm hoping it's also had the effect of reducing my chances of recurrence while I've been taking it. I won't continue with the shots and I'll be giving Tamoxifen a chance instead starting in a couple of months. Although the hot flashes and night sweats were not easy, I adjusted to them.  I noticed that my skin became drier (part. my face)  shortly after starting it. The hot flashes and night sweats were constant after about the second week and they still occur but are not as severe or as frequent as they were for the first three months. The only really terrible side effect was something called "vaginal atrophy". Basically, sex became impossible on Lupron (or, at least it has been for me). It's beyond just having vaginal dryness and lube doesn't seem to help much.  I tried but sex was just incredibly, incredibly painful. If you aren't sexually active than it's not big deal but otherwise, it creates a significant issue. The nurses who administered the shot to me monthly often commented at how problematic Lupron made sex for their patients. One nurse who had been given Lupron shots herself commented that she felt "like a virgin again" every time she had sex with her husband  while on it. Since I wasn't feeling very sexy during chemo, my husband and I just decided to hold off on sex for a few months until the chemo and Lupron treatments ended. My husband has been miserable about it and this is the main reason I would not want to continue with Lupron shots in the future. 

    My doctors didn't give me much info about Lupron and if it would work at protecting my fertility during chemo. They felt it would be better to try it than not to try it but using it during chemo is kind of an off-label use and no one could point to any studies that proved effectiveness for protecting fertility. I'll have to have my bloodwork done in a few months and I suppose I will find out then if I am still fertile. One thing I did come across when I was looking into Lupron was that it is not recommended for the long term if you want to maintain your fertility. I remember reading somewhere that if Lupron shots are given for more than a couple of years, it will likely end a menstrual cycle forever. I don't know if that is 100% accurate but it is what I read. 

    I'll be interested to see the outcome of this study. Just wanted to share my own experience with the drug. 

  • tatasister10
    tatasister10 Member Posts: 52
    edited December 2013

    I have heard a lot of people complain about that but there is also a lot of products out there to combat that SE for most of us. I was hoping the results would be out this december but it looks like early 2014 they will be out. There are several boards on here about women that take both. It was a struggle that I went back and forth with (should I take vs should I not) but in the end, I'm glad I did. The dry skin I only noticed a little bit on my feet and my face is really clear now. The hot flashes are not so bad once you get used to them. I was just so young and knew that I had tons of estrogen flowing, so I wanted to give myself some peace of mind. I read a study somewhere that it didn't help to take both except for a small group of women that were under 40. I was 25 when diagnosed, so I was like sign me up! 

  • indenial
    indenial Member Posts: 504
    edited December 2013

    When is the ASCO meeting?? I am anxious for the results too.

    My estrogen just tested off the charts, wayyyyy above the upper limits, and I am hoping my onc will be on board with Lupron because having THAT much estrogen floating around in me is making me very nervous! I have been in chemopause for the last 8 months but hot flashes are subsiding so maybe my periods are about to return?

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2013

    ASCO...May 30- June 3, 2014

  • indenial
    indenial Member Posts: 504
    edited December 2013

    Hmmm maybe I can convince the doc to give me Zoladex/Lupron 'til the results come out.

    I hate BC.

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