Clinical Trial E5103

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  • TexasRose
    TexasRose Member Posts: 740
    edited November 2009

    Diane- My hair started growing back on Taxol also. Not much but started making an appearance anyway. Mine did not fall out again after that. I will be 6 weeks PFC tomorrow. It's starting to come in pretty good now.

    Onty- My hospital didn't put me on S0307 until I was finished with E5103. We talked about it prior to the end of E5103 and it was always mentioned as something I should do when I was finished with chemo/Avastin.  

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    I'm still on Taxol and my hair is growing back - dark! 

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

    Dear Jenn,

    You are giving me hope gal!

    Dear all,

    I signed up into the SWOG 0307 (bisphosphonates clinical trial) today and got assigned to the Zometa arm today. will get Zometa by IV once a month for 6 months and then every 3 months for 30 months.

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  • brena
    brena Member Posts: 458
    edited November 2009

    Unklezwifeonty,

    Congrats on joining the SWOG 0307, I also joined the trial and am gettting the Clodronate. Horse pills but doable. May u have an easy ride.

    I did not start this trial until i was completely done the taxol on the E5103 trial. I started July 3, 2008 so won't be done until July 2011.

    let us know how u do,

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  • brena
    brena Member Posts: 458
    edited November 2009

    Hi everyone,

    I do read as most of us pop in and out but don't post much, unfortunately the further I stay from cancer topics the better I feel. Don't get me wrong the Dr visits and testing seems to never go away or at least as much as I would like them too. I guess its part of the package whether I like it or not. I am jealous of those who's hair has grown while on taxol, mine still hasn't reached below my ears and it has been 18 months since last taxol. I do have the hairdresser even it but not cut it, she takes all of 5 minutes to trim and spends the next 15 min to fluff, push around, spray and play to make me not feel so bad. Within the last few months I have noticed my hair starting to come out in my comb and on my hand when I put a little gel in it. I think it hormone related not sure but don't want to loose anything that has taken so long to grow. The rest of the hair on my body is not this slow, what gives?

    I have tried to change my fatigue with months of eating better and exercising 5 of 7 days a week with not much weight loss or less fatigue. So I am going to the Endocrinologist on Dec 1st to get some assistance with my hormones. If I didn't mention I did a saliva hormone test in July and it showed my Progesterone and cortisol (morning) below minimum. DHEA, testosterone were just at min but the Estrogen/progesterone ratio was off the charts, below. I need some help because taking the testosterone and progesterone have helped with the menopause symptoms but not with the others. I also have some stress in my personal life which isn't making matters any better.Apparently I cannot do it alone so off to another Dr. for help. Just hoping its the right Dr. and I don't have to go shopping for another. I do need to find another Gyno but assuming I have no problems for a while I won't need to seek one until next summer.

    I am off to Texas over the Thanksgiving holiday to visit my sister and dad, a visit past due so am looking forward to soaking up some sunshine and beating my nephew at pool.

    Take care everyone,

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

    According to this study, dd AC +/- B is not associated with frequent acute or short-term declines in LVEF => http://www.ncbi.nlm.nih.gov/pubmed/19901120

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    Breana - thanks for popping in to tell us how you're doing.  I'm sorry to hear you're having possible harmone problems - how frustrating after dealing with all of this. As for the hair maybe it's a combination of stress and harmones.  I'm crossing my fingers that the dr you go to works for you ((Hugs)).  

    Have a wonderful vacation and beat your nephew at pool..................

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

    Dear Brena,

    Love the "horse pills" description for clodronate! Is it a big pill or is it given like it is given to a horse?

    I got my post AC MUGA done today. LVEF is 57% (pre AC was 59%) so there is very little change and cause for concern.

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

    I got a severe reaction to Taxol after getting only 12cc of the fluid into my body. Couldn't breath and got all hot. Nurse stopped it. Doc is gonna switch me to abraxane.



    Has anyone on ecog 5103 continued getting avastin with abraxane?



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

    I got a severe reaction to Taxol after getting only 12cc of the fluid into my body. Couldn't breath and got all hot. Nurse stopped it. Doc is gonna switch me to abraxane.



    Has anyone on ecog 5103 continued getting avastin with abraxane?



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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    Unk - so sorry you had an allergic reaction to the Taxol - I don't know how they handle the trial if you have to switch drugs - they must have something in place.  Please let me know.

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

    They kicked me off the trial. Unfrikking believable. The clinical trials nurse informed us that ECOG 5103 does not allow continuation of Avastin/Placebo once the patient is switched to Abraxane. That does not make sense to me given that Abaraxane is just albumin bound paclitaxel. Waiting to hear the full story from the oncologist.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    Unk - I am so sorry you were kicked out and unable to tolerate the Taxol.  After you speak to the onc, let us know what he/she says.

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  • littletower
    littletower Member Posts: 333
    edited November 2009

    Unk- That sucks that you were kicked off the trial. I know the feeling. My onc is keeping me on the water pills and ACE inhibitors until I'm done with Taxol and then they will do more heart testing. I gather cardiac catheterization is an option, but we'll see. If I'm like at least the other 5 who developed congestive heart failure and had it clear up on its own after discontinuing Avastin, it would be great! Good luck to you - hope you can resolve this and stay on the Avastin if it's not causing you issues.

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

    Confirmed that I need to be off study since I can not be given Taxol. It sucks but maybe the 4 doses of Avastin I got helped me.

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  • michellehb
    michellehb Member Posts: 35
    edited November 2009

    Onty - so sorry to hear they kicked you off-study. Just doesn't seem right. If it's any consolation, my onc told me the most benefit from Avastin is probably during chemo, not post. You got half the dosage, so if there's any benefit, I'm sure you got some. Hang in there, the Abraxane will be over before you know it. Will you be able to accelerate with DD now that you are off-study?

    I had another MUGA and holding steady at 45 - no worse, no better. I decided too much risk, so I won't be taking more Avastin either. Tumor Board also was unanimous in recommending no radiation, so next for me is tamoxifen. I'm 1.5 weeks off chemo now. Still have aches, fatigue, numbness in toes and fingers, and extremely ugly nails, but every day gets better.

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

    Dear Michelle,

    Yeah I will get DD Abraxane.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited November 2009

    Does anyone else have problems with clodronate making them sick ??  This morning is the second time that I have thrown up after taking it....  I only have 2 yrs and 7 mths to go :(

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

    Are you following the instructions to take clodronate empty stomach with a full glass of water and to stay upright for 1 hour afterwards?

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  • brena
    brena Member Posts: 458
    edited November 2009

    Jaimieh,

    You can take later in the day after your stomach has processed a meal, or if need be take after a light meal..toast. Try different methods to keep it down, definately notify your trial nurse or Onc of your problem.

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

    Anyone know what "abnormal wall motion visible" on the MUGA report may mean and what next steps I need to take?









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  • carolynf
    carolynf Member Posts: 262
    edited November 2009

    Just got back from vacation and wanted to give an update of my onc appt. Talked to him about the trial and he said there was a recent meeting and that they were going to continue w/it.  I am done w/avastin so no need to send me a letter since I finished and my last ekg/echo was the same as when I started.  That made me feel better I guess...I then had an appt w/my Rad Onc (its been 1 year since I've seen him).  He did eval and everything is fine.  Don't have to see him for another year!!  I did speak w/him about a referral for breast symetry/lift.  He gave me local PS and I asked if she worked on rad breast and he was not sure but she's a good PS.  I had gone to her when I broke my finger.  My next year will be finding the "One" to have my boobs done.  I am in no hurry but when I have bathing suit on or sweater, I notice difference.. Might as well have something positive come out of this.

    Brena, I too have had a hard time getting the weight off.  I have not been exercising due to plantar fasitis/bone spur in foot.  Just saw my ortho and he gave me a cortizone shot which was very painful.  Its feeling better but I need to relax the foot for a week before doing PT.  The kids were in shock when we told them about the cruise at the MIA airport.  Had a great time and a pretty good tan!  I think my sister is going to go on the BC cruise w/me next year and maybe mom. My sister is flying all over and we can't seem to connect so maybe today I will be able to track her down!  I need to book ASAP if we are going to do this.  Time to finish making dessert for t-day. 

    Hope all you brave women have a wonderful Thanksgiving! 

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

    Dear Carolyn,

    Thanks for the update on the trial.

    Good to hear you had fun on the cruise. My one and only cruise was in March of this year and we had a ball. We went to Caribbean and Panama Canal.

    Hubby had plantar fascitis 5 years back. After the cortisone shots he used to work out on the elliptical to keep in shape. He claims it helped him.

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  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited November 2009

    Onty I am taking it with a glass of water and staying upright.  It normally does not give me any problems BUT both times that I got sick it was when I ate cereal around the time that I took the medication.  I wait the time that I am supposed to but I think I iwll just avoid taking it with cereal. 

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

    Yeah it sounds like you may need to wait for more than the full hour before eating or drinking ANYTHING.

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  • TexasRose
    TexasRose Member Posts: 740
    edited November 2009

    I am finished with the Avastin also, but I had to sign a consent form that I wanted to stay in the trial so that I could continue to be followed. My clinical trial nurse and I both thought it was funny. Why would anybody who has finished the drug not agree to be followed? LOL If anything, it makes you want to be followed even more so.

    I was 7 weeks PFC on Tuesday and I'm feeling great! My hair is coming in and my energy level is almost back to normal. Tomorrow I am going to the hospital for labs, followup with oncologist, and my Zometa infusion for the bisphosphonates trial.

    We leave next Friday for our cruise and I cannot wait!! I am ready to rest, relax and have a great time!! Hope everybody had a wonderful Thanksgiving!!

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

    What is PFC? Post Foooooking Chemo? LOL

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

    Mary, where are you cruising to already?

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  • jenn3
    jenn3 Member Posts: 3,316
    edited November 2009

    TexasRose - Have a great time on the cruise................. I hear ya' about the consent to stay in the trial and be followed.  After everything you've been through why would you stop now???  I guess it's another one of those formalities.

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  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited November 2009

    Onty, so sorry about your allergic reaction to Taxol and being kicked out of the trial.  We will just believe that the 4 doses you did get will do the trick!!  I hope you have a much easier time with Abraxane.  How many doses of that do you get?

    Mary, enjoy your cruise next week!!  Where are you going?  We just got back from Cabo last night, what a great time, summer clothes and hot temps!!

    Just checking in...I have so many posts to read up on!

    My best to you all!!

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