Clinical Trial E5103

Options
1…4142444647…59

Comments

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

    Teresa, that's great your EF never changed!! wow!  cool about the cruise!!  What fun with your granddaughter, those are very special memories!!

    Onty, I forgot to post my EF scores:

    Muga 1- 66% pre-chemo
    Muga 2- 56% after A/C
    Muga 3- 62% after Taxol and pre solo Avastin
    Muga 4- 60% after 6 solo Avastins
    Muga 5- 51% post solo Avastin (but done on new machine)

    Had multiple EKG's throughout - all normal and my Echo was normal. 

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Kari,

    I'd be not a happy camper with that much variation in LVEF. Looks like yours remained in the normal range but mine is lower (59) to begin with and I'm not sure I'd have the stomach to take the solo Avastin.... Thanks for sharing the info.

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    I hear ya girl!

    · Share on FacebookShare on Twitter
  • cjw
    cjw Member Posts: 42
    edited October 2009

    Hi Cathy

    They did postpone some of the taxol treatments and reduced the dose. I missed two weeks in a row at one point, then got treated, was ok for a few weeks, then it started dropping again, so then they gave me neupogen (this would have been at about Week 6 of the taxol). That did the trick and I was fine other than the numbness in foot (which came back after about 6 weeks). I feel pretty much 100% now (well minus one real boob, of course), back to running 4-5 days a week, etc.

     good luck!

    Carol

    · Share on FacebookShare on Twitter
  • curious02
    curious02 Member Posts: 13
    edited October 2009

    Thanks Carol, I feel so good this week. I did a three mile walk tonight and hip hop dance in the morning. I go in for taxol #3 on Friday. Since I am off the trial I am going to insist on Zometa!! Did you ever think how you would feel if you made the modifications on Taxol and wasnt getting Avastin? I would of been crushed but boy I would of liked to finish the trial!!

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Curious,

    Are you getting Zometa by participating in SWOG 0307 or independently?

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear all,

    I have had 1 Avastin (or Placebo) treatment but not had any nosebleeds or hoarseness. Is there anyone here that did not get these Avastin side effects after first infusion and later find out that they were getting Avastin? Do the side effects get more noticeable after a couple of infusions or do they remain the same?

    · Share on FacebookShare on Twitter
  • sftfemme65
    sftfemme65 Member Posts: 790
    edited October 2009

    I did not notice anything after the first Avastin it was a few into it that I started noticing the side effects. 

    I talk to my clinical trial nurse today, she verified the suspension of the trial but did say that my oncologist was recommending that his high risk for reoccurrance patients continue on the trial because he said that the overall risk for CHF was still very low.  I suppose Ill hear more about whats up at my next appointment in November.

    Teresa

    · Share on FacebookShare on Twitter
  • TexasRose
    TexasRose Member Posts: 740
    edited October 2009

    I also didn't notice anything right away. For me, the side effects of chemo and Avastin were cumulative and definitely got more noticeable as it went on. I was in Arm B, but I was taken off the Avastin after five treatments because it raised my blood pressure so high. I got Avastin with all four of my AC treatments and my first Taxol. We think the bloody nose issues are probably more from the Taxol since I still have issues with that and haven't gotten any Avastin since July 21st.   

    · Share on FacebookShare on Twitter
  • littletower
    littletower Member Posts: 333
    edited October 2009

    OK, idiot me...what the heck is a MUGA? Seems like I should know this, yes? And how do I find it out?

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear LittleTower,

    A MUGA scan measures the efficiency of heart's main pump - the left ventricle. The full name is MUlti GAted Acquisition Scan. It is a very simple and reliable imaging test that is considered very useful in predicting issues with the heart's pumping action. On certain chemo regimens and with certain patients the doctors may order this test before chemo, after chemo and a few times in between. I think most patients on ECOG 5103 are sent for MUGA scans due to 3-4% risk of heart issues from Avastin.

    · Share on FacebookShare on Twitter
  • TexasRose
    TexasRose Member Posts: 740
    edited October 2009

    littletower- A MUGA is a heart test used to evaluate the left ventricle ejection fraction (how the heart is pumping). My insurance would not pay for a MUGA, so I never had one. I had ECHOs and EKGs instead. Mine have always been okay. They said if there had been any problems with either the ECHO OR EKG, they would then order a MUGA.  

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Mary,

    You are right - some insurance don't pay for MUGA. It is way more expensive than an EKG.

    · Share on FacebookShare on Twitter
  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    I am on the Avastin trial, still don't know if I'm getting it, but after my first treatment of AC with Avastin/Placebo I had and still have the bloody sinuses, not necesarily nose bleeds and hoarness. It has continued into Taxol treatments I'm getting.  However, the Taxol treatments are weekly and I'll only get the Avastin/Placebo every third treatment.   I just did Taxol #2 w/o Avastin/Taxol yesterday and the bloody sinuses doesn't seem as bad today, nor does the pain I usually get around my bi-lat incisions.   Also, my MUGA scans, EKG's and blood pressure (as of yesterday 114/82) have not changed from the baseline of 65% that I started with.  I'll just keep praying...................Again, I don't know if I'm getting the Avastin, all of my crazy SE's could be from the AC and Taxol, but this has been some of what I've experienced so far. 

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Jenn,

    Thank you  for sharing your experience.

    · Share on FacebookShare on Twitter
  • Keryl
    Keryl Member Posts: 230
    edited October 2009

    I havent posted for a long time, business travel, etc. I saw my onco this week and my blood tests were clear. I completed avastin so no decision for me, though he did inform me about the trial status. he also said we should be getting a letter. anyway,  Next news, is that I will be having a needle biopsy on my other side next week, just to be sure about a certain spot. I am on tamoxifen.  Oh geez. I swam a mile in the Swim A MIle BC fundraiser at Mills college. Finished in around 50 minutes - no time to brag about - but just completing this felt wonderful. I am glad to hear you are all doing well -  I do want to offer advice on the butt issues - it is really impt. to use the softener regularly- not much worked for me until  my chemo nurse recommended Smooth Move tea found at GNC etc. and it was wonderful. It might not avoid the SE, but makes it much easier and less scarier......

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Thank you Keryl...

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    Just a note about my own butt issues, LOL!  I never had constipation, in fact quite the oppositive, but still hurt very badly when 'going' and had bleeding a lot during the past year until about a few weeks after my solo Avastin's were over.  Who knows!!!

    Keep up the good work ladies, you can do this and we will get through it together!! 

    Hugs!

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Thanks Kari. I will start loading up on Senna-S ahead of tomorrow's chemo. With first one I had constipation for 4 days before the damn burst and then I had diarrhea for 2 days :(

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    oh the joys of chemo........NOT!  LOL!

    OK Ladies, another week ahead, you CAN do this!!  Hugs to all! 

    · Share on FacebookShare on Twitter
  • littletower
    littletower Member Posts: 333
    edited October 2009

    Fourth day out from my third A/C with (?) Avastin. Yuuuch! Always good to read an e-mail that says that I can do this because man, there are days that just BITE!!! Thanks for the support!

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    littletower!  A/C does SUCKETH mucho!!   I HATED it!  But I will be your biggest cheerleader on this thread, cause I know how much it sucks.  Personally, I think #3 was the worst.  #4 is around the corner and it just gets better.  I did A LOT of crying through chemo.  I'm here for ya!

    Big hugs! 

    · Share on FacebookShare on Twitter
  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    I just finished AC and am onto Taxol and agree AC was terrible!!!   As for the butt issues, I never thought I'd discuss them the way I do, but I'm glad to have a place where we can share and laugh at the craziness of it all.  One minute traffic is backed up, the next minute it's racing for the finish line and either way it hurts like hell!!!  I do find that if I take probiotics daily and and stool softners on the days when traffic isn't racing to the finish line I am more regular and it's a little less painful than it was the first month of AC/Avastin-Placebo. 

    I'm also offering (((Hugs))) to those still on AC. 

    · Share on FacebookShare on Twitter
  • cd1234
    cd1234 Member Posts: 169
    edited October 2009

    Hi Ladies,

    I was part of this study. I ended up being in Arm B. I received 8 doses of Avastin along with my 4 rounds of AC and my 12 rounds of Taxol. I did not have too many SE's from Avastin. Actually, my Onc. was surprised that I was receiving Avastin at all because of the lack of SE's. I did have a lot of butt issues. Some days constipated, some days the opposite. The worst was after my last dose of Avastin. I had terrible pain and bleeding. I was sure that I had a serious problem! Good news...it does go away. My bowels are back to normal!

    Take Care Everyone!

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Hi ladies,

    I'm posting from the chemo center right now. The chemo infusions are done. Now getting Avastin/Placebo. No major problems to speak of except the pressure in sinuses from Cytoxan.

    Doc gave me pheneregan prescription also to use if needed.

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    What does the pheneregan do?  Still having sinus issues, ran the humidifier last night in the bedroom and it helped soooooooo much.  GO ONTY!!!!!!!!!!

    · Share on FacebookShare on Twitter
  • jenn3
    jenn3 Member Posts: 3,316
    edited October 2009

    Phenergan is for nausea.  I'm using Vaseline and Ocean Spray for my sinuses, didn't think about the humidifier.  I'll have to give it a try.  Unkle - I had sinus pressure and headaches with the Cytoxan and they slowed the drip from 30 minutes to 45-60 minutes which really helped with the sinus pressure.

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Dear Jenn,

    They slowed the drip from 30 to 45 last time and 60 today but I still had pressure during the IV. I think I will go back to 30 minuts last time and get it over with quicker :)

    Phenergan is for nausea. Over and above Emend, Kytril and Compazine.

    · Share on FacebookShare on Twitter
  • kfinnigan
    kfinnigan Member Posts: 1,729
    edited October 2009

    Oh wow, I could have used that Phenergan during A/C.  I would puke on Day 7 each time.  I used the Ocean Spray but didn't get the humidifier til after Taxol...wish I would have gotten one sooner.

    · Share on FacebookShare on Twitter
  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited October 2009

    Even though pheneregan is a suppository? LOL

    · Share on FacebookShare on Twitter

Categories