Clinical Trial E5103

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  • mitymuffin
    mitymuffin Member Posts: 337
    edited June 2010

    Charliebird, Its an excellent idea to get back into your walking routine. Walking is great medicine.

  • Charliebird
    Charliebird Member Posts: 14
    edited June 2010

    mitymuffin,

    Thanks for the encouraging push . . .I know I need to do it, but I just need to get started again.

    Hugs!

    Laura

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited June 2010

    Ok tomorrow is the BIG day, first treatment.  I have to admit I am a bit nervous/anxious.  I have been having hot flashes for days now (ovaries out in Dec 09) and that isn't helping.  I am glad to be getting started because I can get done until I start, right? 

  • Swanny
    Swanny Member Posts: 147
    edited June 2010

    Had 3rd treatment last Thrusday and I am amazed I am not having hardly any side effects.  The worst again is the taste.  Nothing tastes right but if that is the worse, I'll live with it.  One more treatment of AC on June 24th.  Can't wait till it is over since I think these are the drugs with the most side effects.  Anyone heard different.  Take care everyone.

  • jenweg
    jenweg Member Posts: 195
    edited June 2010

    Swanny you are sooo lucky haha.  I wish I was as fortunate as you with the se's.  I had one so far and it was horrible nauseau after it for days.  I go for number two on Wednesday and I am dreading it!  I am glad to hear though that you are doing so well with it, congrats!!!

  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited June 2010

    Best of luck Jackie tomorrow!!  I remember my first, the nurse (who turned out to be my absolute favorite) told me I had a "deer in the headlights" look.  And I thought I was so cool...LOL  The first one is a mind-game, but then you get the hang of it.

    Swanny, I had the awful taste thing too, and my tongue felt burnt from right after my first AC til a month or so after Taxol finished.

    Jenni, I had the nausea thing after the AC's also.  on Day 7 after each one I would throw up...I swear I had the se's with AC.  Also, my right hand started to peel badly right around my 4th AC and I wore a glove on the my hand at work.  They called me Michael Jackson.

    Hi Laura! 

    Hugs to you gals!!   

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited June 2010

    OK I got through the first one.  It was a long morning but we finished up about 12:45 today (Eastern).  Really it wasn't as bad as I expected.  The A part of the AC was the worst.  I think part of that is the red color.  There was a bit of weird sensation but manageable.  The Bevacizumab was just hard because I knew it was going to be 90 minutes and it was just dripping, dripping, dripping!  Lol. Other than getting a bit tired I am doing ok.  I hope that continues.  I did get the Emend RX filled and took that as soon as I got in the car. 

    I hope you ladies made out ok.  Hugs all around!

  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited June 2010

    Jackie, YAY!!  # 1 is behind you...finito!  The Avastin (Bevaciz...) will end up being a 30 minute infusion down the road.  My stomach still turns at the "A" (red devil).  I remember having all the meds lined up on the counter and notes with the times on them since I was taking them around the clock at different intervals.  Get some rest sister!  

  • Swanny
    Swanny Member Posts: 147
    edited June 2010

    Jackie - Hope you do well in the next few days.  Think positive. 
    Jenni - I hope you do well today.  Take all the drugs they give you. They give me two bags of anti-nausea medicine before any of the chemo.  I think that helps me.

    I have been more tired this week than ususal.  Went to bed Monday night at 7 pm to 4 am.  Tuesday I was exhasuted also and today pretty tired with little spurts of energy.

    One more AC (June 24th) and then on to Taxol.

    Question for the triple negatives - anyone was or is a smoker?  I wonder if my smoking is why I got the TN?   

  • mitymuffin
    mitymuffin Member Posts: 337
    edited June 2010

    To my surprise (because I've never know anything about it) acupuncture has helped me with the side effects. I just feel better after the treatments. 

    This is hard. I've had my second AC, and feel more fatigue than after the first treatment. Its an uphill climb.

  • TexasRose
    TexasRose Member Posts: 740
    edited June 2010

    Hi ladies,

    My heart just aches for all of you going through treatment right now. A year ago, I was in the same place. I just want to tell you that you will get through it.  Like Kari said, AC is cumulative. Each one gets worse, but before you know it you will be done with them. Taxol is a whole other set of SE's, but you will get through those too. For right now, just rest, relax, and let your body heal. Walking is great, but if you don't have the energy then don't do it. Just rest. Don't beat yourselves up right now over not eating healthy or not working out. You have enough to deal with.

    It's been almost 8-1/2 months since my last chemo. My hair is back. My energy level is back. I feel good. Mentally, I still have bad days but I am doing my best to live my life and concentrate on what is most important to me. I have my first post-chemo mammogram in July. That's a little scary, but I will deal. I love the saying, "You never know how strong you are until being strong is the only choice you have."

    I see my onc on Tuesday for my Zometa infusion. I'm also doing the bisphosphonates trial.

    Anyway, I haven't been around in awhile but I wanted to let all you ladies currently in treatment know that you are in my prayers. You can do this. (((hugs))) to all of you.

    Mary 

    Oh and the smoking...I smoked for years and quit in 1997 and I'm a tri neg. I don't even wonder why anymore. (((hugs)))

  • Swanny
    Swanny Member Posts: 147
    edited June 2010

    I added a picture of myself.  Not a current one.  The picture is from when I was 25.  A little heavier now (a lot) and of course NO HAIR but it gives you an idea of what I look like.

    Hope everyone is doing well.  Chemo tomorrow - last AC treatment.

  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited June 2010

    Swanny, great pic!  #4 tomorrow for you of the nasty A/C!!!!  You are doing it girl!!! 

  • jenweg
    jenweg Member Posts: 195
    edited June 2010

    I am jealous Swanny, final number four for you!! You go girl.  That is great, I am halfway there with ac, can't wait for it to be done and pray that the next round is easier like they say!!!!!  Love the pic!

  • TexasRose
    TexasRose Member Posts: 740
    edited June 2010

    Swanny- nice to "see" you! Congrats on being done with AC!! That is a huge accomplishment!!

    Jenni- Hang in girl!! It will be over soon!

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited June 2010

    Hi Ladies,

    I am so blessed - I had minimal SE;s after this first round.  Treatment #2 is next Tuesday.  I can only hope it goes as well as this round did.  Thinking positive and pushing on! 

  • TexasRose
    TexasRose Member Posts: 740
    edited July 2010

    How is everybody doing? Hang in there! It will be over before you know it!! My thoughts and prayers are always with you. (((hugs)))

  • Swanny
    Swanny Member Posts: 147
    edited July 2010

    Start Taxol weekly on the 8th.  Get the study drug the first time and then every 3rd week.  I had pretty bad SE's this last time but I also had unusual circumstances.  My mother passed away on Saturday (chemo was the Thursday before).  I was her caregiver so besides recovering from chemo I had to make all the arrangements.  We had a 4 hour wake that almost killed me.  I was on my feet and greeting and talking to everyone the whole time.  I should not have done that.  I should have sat in the chair and waited for everyone to come to me.  My mother did not suffer and for that I am truly thankful. I had taken care of my mother for the past 10 years and she was getting increasingly worse so I am so thankful that she did not get worse and that I did not have to put her in a nursing home.  It was coming to that.  Anyway, I am fine now.  It was bad on Wednesday and Thursday but I finally got my appetitie back on Thursday night.  I lost 9 pounds in that week.  I am doing fine now - resting and healing and putting weight back on (although I hope most of it stays off). 

    I hope everyone is doing fine.  I look forward to hearing good news from everyone.  Take care.   

  • TexasRose
    TexasRose Member Posts: 740
    edited July 2010

    Swanny,

    I am so sorry for the loss of your mom. (((hugs))) to you. You are in my thoughts and prayers. And I hope Taxol is kind to you. I had it weekly also.

  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited July 2010

    Swanny, I am sorry also for your loss.  Sending hugs your way.  Hoping Taxol is kind to you.

  • rachel21mel
    rachel21mel Member Posts: 51
    edited July 2010

    Hi, all. I have been following this topic, although this is my first post here. I started chemo with clinical trial E5103 with Avastin last August. I am on Arm C of the trial and was unblinded in the fall.

    I have done 16/18 treatments to date. My last treatment was canceled because my protein to creatinine ratio is 4.1. That is considered nephrotic syndrome, and I am extremely, extremely concerned. My protein levels have been high since the fall, but now they are beyond the limit at which they will let me get treatment.

    Has anyone else had this problem?

    I am scheduled for another urine protein test next week. I really feel that I should quit the trial now before I have complete kidney failure.

    I have/had stage 3C cancer, and I have been glad for the doses of Avastin I have received.

    Melody

  • Swanny
    Swanny Member Posts: 147
    edited July 2010

    Hi Melody.  Glad you joined us.  Sorry I can't tell you anything.  I am just starting Taxol.  I am sure some of the girls that have completed/gone farther can help you.  Which drug is causing your problems?  I had a urine protein test today but don't know the results yet.  I'll have to ask when I get chemo on Thursday.

    I had my 2nd muga test last Friday.  First muga had a score of 57, the second 52 so the doc said they were glad I was through with the AC.  They will have me take another muga in a few months.  They tell me anything over 50 is good but 52 is real close to 50.  Taxol they say will not affect my heart.

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited July 2010

    Swanny, I am so sorry to hear about your Mom.  Thoughts and prayers are with you! 

    Rachel - I can't help you because my first UPC test is next Monday but I would definitely have a conversation with the Onc about the creatin level. 

  • rachel21mel
    rachel21mel Member Posts: 51
    edited July 2010

    Thanks, Swanny and Jackie...I just want everyone that reads this thread to be aware of the kidney failure dangers from Avastin. Not to freak anyone out, but it is very serious.

    http://www.healthkey.com/sns-health-avastin-kidney-damage,0,1655862.story

    Just something to keep in mind. When you are having your urine protein levels monitored, make sure to get a copy of the results. I didn't realize until a couple of weeks ago just how high my protein levels were. My doctor just told me that "It's high but below the cutoff point where you can't have treatment." Now I may have permanent kidney damage.

    I still would encourage everyone to participate and continue with the trial but also to keep a close watch on your kidney function.

    Melody 

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited July 2010

    Good to know Melody!  Thank you!  I will definitely get copies of my reports.

  • Swanny
    Swanny Member Posts: 147
    edited July 2010

    Had the first taxol.  Doing fine.  Seems they are most worried about having an alergic reaction to the drug so they gave me something for that first that made me fall asleep during the treatment.  Hope I was not snoring (ha-ha).  I asked then about urine levels asked and they showed me the results.  It looked good (.89).  Thanks for the heads up on that.  I'll keep checking.  Good luck everyone.

  • Swanny
    Swanny Member Posts: 147
    edited July 2010

    Oh - and I forgot to tell you.  TODAY'S MY BIRTHDAY!!  53 AND GOING STRONG!

  • grneyd5600
    grneyd5600 Member Posts: 420
    edited July 2010

    Swanny - HAPPY BIRTHDAY!!!!  I hope you have a wonderful day and remember you aren't just going strong - YOU ROCK!!!!  Glad to hear the first Taxol went well.   May that continue!

  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited July 2010

    Swanny, Happy Birthday!!

    That Benadryl is a bear throughout Taxol, that makes you instantly close your eyes!!   

  • TexasRose
    TexasRose Member Posts: 740
    edited July 2010

    Happy Birthday Swanny!! Glad Taxol #1 went well!!!  Hang in there!

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