ENERGY Clinical Trial

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Working on Your Fitness

Anyone else participating in the ENERGY clinical trial? Any feedback?

The ENERGY Trial is "Exercise and Nutritional Enhance Recovery and Good Healthy to You"  The research is being done to find out if overweight breast cancer survivors participating in a behavior modification program can lose weight and keep it off for over 2 years.

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  • FaithFollower
    FaithFollower Member Posts: 49
    edited February 2011

    I went on the NCI website but did not find the trial info.  Do you have a link?

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  • Jelson
    Jelson Member Posts: 1,535
    edited February 2011

    http://health.ucsd.edu/news/2010/6-23-energy-cancer.htm

    I googled it and found the reference above

    Julie E

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  • thenewme
    thenewme Member Posts: 1,611
    edited February 2011

    Ooohh, thanks for sharing this!

    http://energytrial.ucsd.edu/

    "Studies suggest that overweight breast cancer survivors could be at risk for recurrence. The Cancer Prevention and Control Program at UCSD is conducting a research study on physical activity and eating attitudes and behaviors in women who are at risk for breast cancer recurrence.

    The four-year study funded by the National Institutes of Health National Cancer Institute will help participants learn more healthful attitudes and behaviors to improve and promote long-term weight control."

    I just looked it up and it sounds interesting!  I wonder what they define as "overweight?"  I do notice that the trial sponsor  is something called "Calorie King" - I'll look them up and see what I can find!  I was pleasantly surprised to see that there is a contact listed in my area!

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  • thenewme
    thenewme Member Posts: 1,611
    edited February 2011

    Apparently "overweight" for this study is BMI of 27-40. 

    I found a body mass index calculator here: http://www.nhlbisupport.com/bmi/

    Well drats, I guess I don't qualify!  Mixed blessing I guess- I definitely need to lose some weight and get in better shape, but don't meet their definition.  I was thinking it looked like a really helpful study - dang!  Ah well - still looking into the CalorieKing thing.  

    Nkrun - are you already enrolled in the study?  Do they use the Calorie King system?  If so, I'd love to hear more about it if you care to share, either here or via PM! 

    Thanks again for sharing!  Hopefully more of us here will  be able to participate!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Thenewme

    No I am not enrolled in the study yet. I have to wait to finish Herceptin in April.  Based on the initial screening with the coordinator, I qualify.  As I told my husband...oh goodie, I'm fat enough to get into the trial. Not sure that is a good thing. 

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  • thenewme
    thenewme Member Posts: 1,611
    edited February 2011

    Hi nkrun,

    I heard back from the coordinator in my area, and it really does sound like a good study to be in!  I was actually surprised my BMI wasn't high enough, but it's not far off, so I'm not sure that is a good thing, either! I was hoping I'd qualify, since I'm really struggling with motivation lately for nutrition, exercise, etc., and I'd definitely benefit from being "accountable" to the study group and other participants.

    Let us know how it goes for you!   Surely there must be some others around here who are in the study...?

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  • VickiSam
    VickiSam Member Posts: 407
    edited February 2011

    Thank you all so much for this information.  I will get on .. asap ..   Over weight women, and recurrence ... Ouch ... !     Gotta get off those extra .. chemo therapy infusion .. lbs ...Yikes

    Vicki Sam

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  • thenewme
    thenewme Member Posts: 1,611
    edited June 2011

    Good news about this trial - they've modified the requirements for the ENERGY study in order to recruit more people, and I've at least initially qualified!  I'm not sure about other locations, but I know they're definitely looking for more participants here in Colorado, so I'd love to hear from anyone doing this study too!  

    Nkrun - thanks again for sharing this trial with us!  Did you end up participating in it?

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited June 2011

    I e-mailed the person mentioned in the link, but just wondering if the study is limited to people near San Diego and the couple of other sites mentioned. Anyone know?

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited June 2011

    To answer my own question ...I got this response today to my enquiry about the study:

    Thank you for your interest in the ENERGY Trial. The study does require weekly meeting (if you are assigned to the more intensive arm). Currently there are four study sites at Alabama, California, Colorado and Missouri. We do hope to extend the study within a year to other sites and I do hope there will be a site in NY
     

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  • thenewme
    thenewme Member Posts: 1,611
    edited July 2011

    Hi MaryNY,  hopefully they can offer it there in NY soon!  Hopefully there may be some others around here (BCO) who are or will be participating in this study and might share some thoughts...?

    Anybody?

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  • thenewme
    thenewme Member Posts: 1,611
    edited July 2011

    Update:

    I'm still waiting to see if I officially get into this study, but so far so good!  I'm really excited about it!  There are two groups - "intensive" or "less intensive."  I'll be in the intensive group, which consists of 16 weeks of 90-minute classes during the first 4 months. 

    "Group session will be conducted by staff with a background in dietetics or psychology and/or exercise physiology and trained in the nutrititonal and exercise component of the intervention by a registered dietitian and exercise physiologist with ACSM Cancer Exercise Specialist Certification"

    "During the group-based program, you will receive dietary guidance to promota a reduction in your overall calorie intake.  You will learn about reading food labels and assessing calorie counts as well as be asked to monitor your daily food intake.  You will also receive physical activity guidance to gradually increase your physical activity up to 60 minutes per day of aerobic exercise.  Aerobic, lifestyle, and strength training exercise will be discussed..."

    Anyway, if you live near any of the study sites and struggle with weight/diet/energy/etc issues like I know a lot of us do, I'd definitely recommend looking into this study!  

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  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011

    What a shame only three locations. I would love to be a part of this study.

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  • thenewme
    thenewme Member Posts: 1,611
    edited July 2011

    Hi Kira,

    I know they're hoping for 960 participants.  When I first looked into it, the BMI requirement was 27 or above, and they lowered it to 25 and above to try to get more participants.  From Mary's post above, it sounds like they're hoping to expand it to other sites, so I'd say keep checking back to see if they add Florida!  

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  • kira1234
    kira1234 Member Posts: 3,091
    edited July 2011
    I believe I'm 27 or above will have to check. I know I've gained about 10 pounds in the last 6 months since I started Femara.Undecided
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  • thenewme
    thenewme Member Posts: 1,611
    edited July 2011

    Hi Kira,

    There's a BMI calculator here:   http://www.nhlbisupport.com/bmi/ .  I think the reason they lowered the BMI qualification from 27 to 25 was that they were struggling to get enough participants.  It doesn't seem that many people here at BCO know about the study or are participating, so maybe they're still trying to get enough people enrolled.  Hopefully they'll end up  expanding the trial to more locations so they can get the 960 participants!

    In the meantime, help spread the word if you know anyone who might qualify near Denver, San Diego, Los Angeles, Birmingham, or St. Louis, MO!  

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  • crabbiepattie
    crabbiepattie Member Posts: 108
    edited July 2011

    Thanks for posting this, nkrun!  I can't make myself exercise for some reason; I'm hoping this will help me and, as a bonus, help others.

    The study coordinator is sending me paperwork (questionnaires, release forms).  If I lose some weight, I might drop out of the new lower limit. Ain't likely, though; I'm gaining and not losing. Hey the newme, I'm in the Denver area.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    I got into the trial shortly after completing my last round of herceptin in May. I was hoping to get into the more intensive arm but wound up getting into the less intensive one. The less intensive includes weekly emails from a nutritionist, invites to monthly meetings and I believe a few follow ups. My initial session included a mini fitness test and evaluation. The nutritionist outlined a very basic diet plan that included calorie and nutrition guidelines. The information received from the program so far has been mildly effective. Because I record everything I eat and all exercise I have been better about what goes into my mouth. Probably lost about 8 pounds since I started.  Hey I'm doing my part for research.  If I can prevent recurrence double bonus.

    It is my understanding as well that the BMI was lowered to recruit more participants. I was just under 27 and got in no problem.

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  • crabbiepattie
    crabbiepattie Member Posts: 108
    edited August 2011

    All rightie, I'm scheduled for an initial evaluation with a blood test.  nkrun, what is tested on the blood test?

    And nkrun, congratulations on losing 8 pounds!

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  • thenewme
    thenewme Member Posts: 1,611
    edited August 2011

    Wow, nkrun - congrats on the weight loss!  How are you feeling?  Is the less-intensive arm also for the whole 2 years? 

    I finally got my initial appointment too, Crabbiepattie!  I was randomized into the more-intensive arm, and I'm really looking forward to getting started!  Maybe I'll see you there!?

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited August 2011

    Congrats on being accepted into the study!

    While I think there is most likely benefit from both arms, the more intensive one will most likely lead to greater weight loss/muscle tone etc.

    I just need to eat less and shed the 10 extra pounds.  I really look and feel my best at that weight.

    The really important benefits are strength, better balance, and conversion of flab to muscle.  At the same weight, muscle looks a lot more attractive.

    I was reading a description of the study.  Interesting that they missed the effect of exercise on mood and coping with the fun stuff that life throws at you.  To say nothing of the endorphin high that I even got during chemo.

    I will be interested in reading the study results.  I am expecting immediate QOL, and longer term survival benefits as well.

    The only drawback I can think of is monies spent shopping once you get your new svelte figure.

    Good luck...... - Claire

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  • thenewme
    thenewme Member Posts: 1,611
    edited August 2011

    Claire, TOO funny!   I'm really looking forward to the "side effects" you mention!!!  I'm not sure they were missed - I think it's just so widely accepted (no pun intended!) that exercise and healthy habits/choices are GOOD for you in so many ways, so they didn't need another study to reconfirm that.  

    As to the financial drawback.... well..... yeah... I'll be happy to cross that bridge, LOL!  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2011

    thenewme-congratulations on getting into the more intensive arm of the study. I am curious to hear how the level of intensity really is different between the 2 arms. Yes I believe the less intensive study is 2 years as well. While I was hoping to get into the more intensive arm, in reality I could not handle the time commitment. I travel more than 50% of the time for work so I would miss most of the weekly meetings.

    crabbiepattie-If I recall the blood test is a complete blood panel.

    Claire-yes definitely looking forward to those side effects. Dropped another pound last week only a few more to go to feel normal again. At this point the clothes still fit.

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  • Tigwin
    Tigwin Member Posts: 275
    edited September 2011

    Hello Nkrun,

    I have not been on this forum in a long time but, I am in the San Diego Energy Trial as well. I am in the same group as you but have not made it to the two meetings due to work.  I live in RB and have not been able to get to the meetings. Trying to make it to the next one.  I would love to meet you and see how you are doing. I have been in the group since March. I have lost some good weight and became Vegan. I am trying to walk three times a week for five miles.  The more I walk the easier it gets and the better energy I have.  I am detemined to do this and very honored to be in this trial.  Please private message me and lets see if we can find a time to meet or speak.

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  • thenewme
    thenewme Member Posts: 1,611
    edited September 2011

    I missed this before - I'm so happy to see some others in this trial too!  Nkrun, I guess I misunderstood the coordinator about being placed in the more intensive arm, because when I went for my initial visit, they told me I'm "participant number 14" of 30, and that they won't randomize us into the two arms until they get the full 30.  I'm REALLY hoping I do get into the more intensive arm, though, and I'm looking forward to maybe meeting CrabbiePattie!

    Nkrun, you rock!  It sounds like you're doing great! I think your arm is the one with the nutritionist consultation and then weekly conference calls or something, right?  Have you found that to be helpful?  

    Tigwin - good to hear from you!  Wow -  it sounds like you're doing great too!  So are you in the higher-intensity group where you do the weekly meetings/classes?  

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  • crabbiepattie
    crabbiepattie Member Posts: 108
    edited September 2011

    Well, I got into the intensive arm!  I missed the first meeting but just went to the second one. One of the homework items is to log all your food intake - something I've always meant to do but never did.

    Thenewme, PM me and we'll get together for a hike.

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  • KSteve
    KSteve Member Posts: 486
    edited October 2011

    thenewme - Just saw your posts.  I am in the ENERGY trial in CO too!  I was notified last Friday that I'll be in the more intensive group and that it will start October 13.  What about you? 

    Kathy

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  • KSteve
    KSteve Member Posts: 486
    edited October 2011

    Tonight is my first ENERGY trial meeting.  Looking forward to the beginning of getting back into a healthy routine.  Time for a new me (and looking much better in a bathing suit by next summer!).

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  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2011

    Just saw this thread pop up again.  Hoping everyone is out there moving it.  Reminder for those in colder climes that there is lots of stuff out there to stay warm and toasty.

    I am on an eBay search for new cycling tights and for silk turtleneck base layers.  Essentials, and I have worn out/tossed my old gear.  Am on the case though as old and mangy looking doesn't cut it.

    I have dropped a bit of weight since my last post by keeping up the cycling.  So two long rides per week.  I try to do a total of 60 miles minimum.  I walk and do a weights/crunches routine on the other days.

    Was just reading another thread about AIs and long term side effects.  Somehow, I think that bone loss and cardio issues are minimized by exercise.  I know I am stronger/fitter than ever.  My bone density is just fine too.

    The payoff.....and this was when I was cycling during radiation.....was rounding a corner and the passenger in the car waiting at the light called out "nice ass".  Sure made my day. - Claire

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  • MaryNY
    MaryNY Member Posts: 1,584
    edited October 2011

    Claire: congratulations on the nice ass. You deserve some new duds.

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