Anyone in control groups in trials Pallas or Monarche?

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Minniesi
Minniesi Member Posts: 5
edited October 2018 in Clinical Trials, Research News, Podcasts, and Study Results

Oh, the frustation when I was randomized to control group! I would have done anything to get the drug, I believe it will make a difference in future for us in stage 3. How are you coping with mental side of being in control group? My next blood tests are in two months, I found the first 6 months really difficult going to hospital every 2 weeks or 4 weeks to give bloods. I was sure every time that there would be something wrong with the results. Well, something has been "wrong", my WBC has beem 2.4-2.7 for the last 8 months. I have no other explanation than the zoladex+tamoxifen lowering those (much needed) white blood cells. My doctor in trial said that even if I was in the drug-group, I would be taken of because of my counts. I would love to here how anyone else in this trials are doing? How do you cope with being in control group?

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  • TWills
    TWills Member Posts: 679
    edited August 2018

    I was placed in the control group and was pissed at first. I felt angry and frustrated that I even got my hopes up. It’s been about 8 months since and I haven’t even thought about it for several months to be honest, probably because the blood tests get more spread out over time. I also remind myself I can quit the trial at any time.It’s kind of like everything else that we go through after diagnosis, we just adapt. I’m not Stage 3, I’m 2 but like you I’m on the young side so I think I could have really benefited from taking it. I’m not enjoying the Tamoxifen side effects so I just resigned myself to thinking that it would have only been worse with the additional drug. I also have issues with low WBC, it was at 0 during chemo and I was hospitalized in isolation several times so I would have probably not been able to stay on it anyway. Hope you feel better about it soon:)


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  • Minniesi
    Minniesi Member Posts: 5
    edited October 2018

    Thanks TWills! It's true,now that the bloodworks are more spread out, I'm a bit calmer. But there are times that my mind goes to real dark places. It's kind of comforting to hear that others experience those feelings of anger and frustration in control group. Wishing you best of health :)

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