Invited to participate in a research study

sarajaneevans
sarajaneevans Member Posts: 187
edited April 2015 in Older Than 60 Years Old With Breast Cancer

about decision making in woman 65 and above who recently completed breast cancer treatment-

The purpose is to understand what drives treatment decisions with aromatase inhibitors (such as Arimidex, Aromasin and Femara--

I received this letter from an assistant at UCLA School of Nursing.

I am wondering if any of you have received such a request- ? ?? or been involved in anything of this nature?

It looks legit I guess. UCLA letterhead??


thanks,


sjl



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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2015

    Here is a link - scroll down the page to the third topic, looks legit to me.

    http://nursing.ucla.edu/body.cfm?id=482

    And another:

    http://www.uclahealth.org/body.cfm?id=543

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  • BrooksideVT
    BrooksideVT Member Posts: 2,211
    edited January 2015

    Wow! Seems like a much needed study. I kind of question the statistics in the first article you provided, Special K-- the very high percentageof those over 65 who die of bc can't possibly be true, can it? And that 30%-49% of those of us over 65 (such as myself) quit AI's within the first year? Can that be true? I've certainly had my issues with both arimidex and exemestane, but with breaks and so forth, I've managed for almost two years so far and think/hope I'll make it to five. I know my onc is very supportive, told me at our very first meeting that if I had problems with the drug, we'd try a holiday.

    I wish I were near UCLA because I'd love to be part of the trial. Just knowing the questions they'd ask would be helpful.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited January 2015

    brookside - here is some more info:

    http://ww5.komen.org/Breast-Cancer-News/Outcomes-in-Older-Women-with-Breast-Cancer.html

    http://www.foxnews.com/health/2012/02/08/breast-cancer-kills-older-women-more-often/

    My only personal experience with someone over 65 is a friend who was 69 at the time of diagnosis with a stage 1 ER+ breast lump - she did a lumpectomy, reluctantly did Canadian protocol rads, and never filled her prescription for hormonal therapy.

    I wonder if you contacted them if they could include you and do the interview by phone.  It is also a paid study, 1-1 1/2 hour conversation, and you are compensated $60.

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  • Fitz33
    Fitz33 Member Posts: 243
    edited January 2015

    I was involved in a UCLA study for post-menopausal women taking an AI a couple of years ago, no money involved, just a trial for blood work and I think 2 meetings. They didn't receive full funding for the study. I joined it because I was told the statistics for post-menopausal women discontinuing the AI due to the various problems mentioned in what you received and how half of the women went off of the AI. The reason for the study was to find out why some women could stay on it and others could not. I had blood work I think twice and filled out extensive questionnaires. I'm still on Anastrazole and live with the side effects but just hearing the statistics will make sure I'll not go off of it even if they tell me I have to take it for 10 years.

    This study looks like it has more to do with decision making and the one I was on was with blood work. Maybe they received funding for another part of the study. The doctors were very disappointed to have not gotten full funding at that time.

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited January 2015

    Thank you SO MUCH.. i will go check it out further-- Dr. Huibrie Pieters is the person I received the letter from- I can you let you know the questions they ask if you would like..


    I will contact her this afternoon-- thanks

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  • Fitz33
    Fitz33 Member Posts: 243
    edited January 2015

    Sure, that would be great to know their questions. I hope they can help understand more and more how these AIs work with individual bodies. I remember one thing the study lead doctor told me that I adhered by was when you get a side effect and continue taking the AI the side effect may go away or becomes more tolerable. That's worked for me ever since.

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited January 2015

    I am on Arimidex- several months into it I began having pain in my arms- so painful I could not raise them above my head-couldn't lie on either side while sleeping-I was sure it was a SE of the Arimidex so I was prepared to ride it out- I was seeing my primary for something and I mentioned it to her- I can't remember now but I was taking some medication and I can't recall what it was for- but she changed it to something else. She said that medication would cause what I was experiencing --and after I stopped taking that particular med the pain all went away-- while this was going on I saw my oncologist - I mentioned the pain to him and he right away changed my prescription, which I did not want- he said it for a month and see if the pain went away- I decided to see if the replacement from my primary made would make any difference first.. and it did. Made a world of difference so I have never changed from Arimidex.


    I called the Dr. who is doing the study and left word that I would participate and help any way I can. She has not called me back as yet.


    In the mean time I am going to investigate to see if I can figure out what my primary changed me from that has made all the difference in the pain in my arms-

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  • Fitz33
    Fitz33 Member Posts: 243
    edited January 2015

    it can be so difficult to figure out drug interactions. So glad you figured yours out

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited March 2015

    ThanKs Fitz33 (:

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited March 2015

    Why older women in the 65+ age group choose to stop taking Arimidex:,Aromasin or Femara.


    I had my interview today with Huibrie Pieters, PhD, who is doing the study- The main interest is in woman 65 and older who have stopped taking these medications.

    If you are in this category,live in So Cal, Dr. Pieters would very much like to speak with you to see if you would be interested in

    participating in the study- it is being done to help women in the future who get a breast cancer diagnosis.

    If you fit this criteria and would like to participate-- send me a pm and I will give you the contact information for her assistant.


    Dr. Pieters is a lovely,very kind, non-judgmental woman..

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  • mysunshine48
    mysunshine48 Member Posts: 1,480
    edited March 2015

    I am 66 and am about to have a BMX. I know I will need chemo and Arimidex. Why would anyone NOT do or take anything that could help them? I just do not understand that. I am sure there are going to be SE from both chemo and Arimidex, but right now, I plan to just do it the best I can. I am trying to be positive and plan on continuing to exercise and live my life. If I have to slow down for this a little, I will, but I will be a fighter all the way!

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  • sarajaneevans
    sarajaneevans Member Posts: 187
    edited April 2015

    Good luck to you on your journey mysunshine4- I am not sure why some women would not do what they can to help themselves- I guess that is why the study to find out why those don't- as we are all individuals I guess side effects for some can be far worse than for others and that may be a cause- the price I guess could be an issue as well..- I only pay $5 a month for the generic and the side effects are minimal considering everything else. but that is just me. some women just might not care any longer- who knows? Like you, I can't imagine not doing whatever it takes- good luck to you!(:

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  • grammakathy
    grammakathy Member Posts: 407
    edited April 2015

    mysunshine - I agree with you. We fight this with all we have. Sometimes I think the road seems so long for some people though and I can understand their stance. And there are a hundred million variables in this rotten disease. Keep up your fight!

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