Roll Call: Anyone in the Phase III Trial of Bisphosphonates

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Union County. Near Overlook Hospital. You?

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    I live in Mass now but I was born at Overlook Hospital!  LOL!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Wow. Small world!

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    It really is, Onty!

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Ok here is the scoop. If your oncologist does not participate in this (or another) clinical trial directly because they are not member of the relevant oncology research organization such as  ECOG, SWOG, NSABP, etc., they may still be able to participate if they are a member of CTSU.ORG. Apparently, membership in CTSU allows them to participate in clinical trials sponsored by the other oncology research organizations.

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  • Morgan513
    Morgan513 Member Posts: 664
    edited November 2009

    Thanks for the info Onty.  I'm going to check to see the status of my onco group.

    Lorrie 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    I have been pushing my onco to consider this study. It has been an uphill battle. I am just hoping it is worth it.

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  • weety
    weety Member Posts: 1,163
    edited November 2009

    Yesterday I saw my onc before tx#5.  I went in all ready to press my case for getting zometa off-label one last time (even though my kaiser site does partcipate in the trial, there are several reasons I did not want to do it--I'll say more about them down below.)  Anyways, I am convinced my onc must be bipolar or something!  All of her arguments she seemed to be so adamantly against 2 weeks were suddenly gone.  I was all ready with my research in hand this time!  She was open to hear what I said, and even finally agreed that if I wanted the zometa for "osteoporisis" she would most likely prescribe it.  She said the standard for osteoporisis is 2-3 times per year.  She might do the 3 times a year to bring it even that much closer to the trial.

    As for the trial, I was afraid of the dosaging amounts being too high for me.  It is not adjusted for weight, and I happen to be on the tiny side (slightly over 100 pounds.)  Also, I am afraid that if I enter this study, I would not be eligible to enter another, if something "better" came along.  Plus, I really wanted the zometa and didn't want to have to deal with the daily pills of clondronate--sounded a little too inconvenient for me.  I know, I shouldn't even think that way!  Anyways, I still haven't made my final decision.  I won't start either until after my chemo is finished in December, so I will continue to visit this thread to hear what any of you all say, and also to post any updates I get.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    Dear Weety,

    It sounds like you made the right decision for yourself. I still have not decided whether I prefer the IV Zometa or oral Clodronate but I'm gonna sign up for the trial and see how it goes. My onco does not like to be pushed with hard evidence (DH found out early on!), so I just ask her "for my peace of mind" and she usually agrees! But every onco is different.

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    For those on E5103 and the zometa arm of S0307 (bisphosphonates), do you get your zometa infusions same day as chemo or another day?

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    I signed up and got assigned to the Zometa arm today. My onco said I'd get the Zometa same days as my chemo (and/or Avastin).

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited November 2009

    I got my pre-testing done today.

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  • gcarter
    gcarter Member Posts: 65
    edited December 2009

    Good day Ladied.

    Hello to everyone. My name is Gina Carter and I am on the clodrante arm. I have been on it for 2 months. Today is my first meeting with my onc since I have been on it. It was tough to start. I set my alarm to 5 and take my med. I sit up watching tv and sometime (most times ) i fall back to sleep. I am sitting up. I also am very tired I do not know if its 1600mg of clodrante or tamox. I started taking alot of vitamins and that has seemed to help. Today they will run my blood work to check the creatine levels. Other then that I feel ok. I must admit I did this clinical trila because I felt like they were done with me and that was that. I feel like I will ahve more followup care because of going on this trial. I hope that I was right.

    Gcarter

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  • Warrior517
    Warrior517 Member Posts: 355
    edited December 2009

    Welcome Gcarter!! I am in Shelby Twp. I go thru Beaumont in Royal Oak...who do you see?? I am on boniva and have been for nearly a year now..so far, so good! Does anyone know if we are allowed to do other clinical trials while on this one???

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear Warrior,

    Yes we are allowed to do most other trials while on this one. The only restriction is other trials that have bone density agents.

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  • gcarter
    gcarter Member Posts: 65
    edited December 2009

    Warrior (love that)

    Jeffery Margolis is my onc. Dr. Benetiz was my general surgeon. I am also out of Royal Oak Beaumont. Who is yours?

    Gcarter

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  • Warrior517
    Warrior517 Member Posts: 355
    edited December 2009

    I have heard good things about him . I with Dr. David Decker out of the Cancer Center there! Great Guy, too!!

    I did a DIEP reconstruction in New Orleans in Sept and go back next week already for Phase 2!! i can;t believe its been 3 months already!! Arrghh...trying to shop and have all ready before surgery!!

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  • gcarter
    gcarter Member Posts: 65
    edited December 2009

    Warrior

    Is this your last phase? Why did you have to travel so far? I wish you luck next week, too.

    Gcarter

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    I'm wondering what painkillers people use for the bone pain with Zometa. I used tylenol which did not do much. Then I used advil although my nurse had not explicitly mentioned advil (either ways).



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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited December 2009

    Hello Ladies,

    I am on the clodronate band of the study.  I have had to stop for a week now because my esophagus and stomach are so irritated.  Has anyone else had these symptoms? 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear SunAndSandGirl,

    Curious if you  are taking it empty stomach with full glass of water and staying upright one hour after taking it.

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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited December 2009

    unklezwifeonty,

    Yes, I do take it with a full glass of water and stay upright for one hour.  I have tried it taking it as soon as I wake up and then they had me try taking it 2 hours after lunch and then staying upright.  Neither seems to help. 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    I suspected that but thought would ask. I guess your onco would advise some remedies. Do let us know what works. I'm sure there would be other ladies who would chime in and yet others who would benefit from hearing what worked for you.



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  • TexasRose
    TexasRose Member Posts: 740
    edited December 2009

    Onty- I only had bone pain (body aches) with the first infusion. I had my second infusion the day after Thanksgiving and really didn't have any pain to speak of. My clinical trial nurse told me I should only have side effects for the first treatment. Maybe mild for the second, but should be fine after that. So far, that has been my experience.  

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    Dear Mary,

    That's good to know. I'm not sure whether to blame Abraxane (Taxol), Neulasta or Zometa!

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  • dfrn212
    dfrn212 Member Posts: 7
    edited December 2009

    I've been in the trial and taking ibandrinate since august 09. Anyone taking the ibandronate(boniva) with muscle aches and/or joint pain? My onc just told me I can hold it for 1-2 weeks to see if it gets better.  Wondering if anyone has had similar experience.  Di the pain go away? Did you go back on thr drug?

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  • Morgan513
    Morgan513 Member Posts: 664
    edited December 2009

    I am on the Ibandronate arm and I never got any aches or pains.  I was told that I could get them.  Sorry I couldn't be of more help!  I hope you feel better soon!

    Lorrie 

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  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited December 2009

    I got Zometa #2 today. Will be watching closely for bone pain this time and will take the "good stuff" when needed for pain :-)





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  • Morgan513
    Morgan513 Member Posts: 664
    edited December 2009

    Onty--I hope you are doing well.  From what I've read, you may not have too bad of a time this time around.  I'll keep my fingers crossed!

    Lorrie 

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  • samiam40
    samiam40 Member Posts: 416
    edited December 2009

    Hope you are feeling good.  I recently got Zometa #6 and haven't had any side effects since #1.

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