HER II and Taxol Trial

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  • joansf
    joansf Member Posts: 103
    edited April 2010

    I am celebrating the end of my taxol this past Thursday!!  It's over!!  Friday was definitely the first day of the rest of my life!!  I hope everyone is well and enjoying Easter.  xo Joan

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  • septembersong
    septembersong Member Posts: 287
    edited April 2010

    Joan, what a great day. Hope you had an Easter full of joy and hope.

     Ann 

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  • Melinda41
    Melinda41 Member Posts: 672
    edited April 2010

    Congrats Joan!!!

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  • roso88
    roso88 Member Posts: 31
    edited April 2010

    Joan - Just in time for spring -- what wonderful news.  Big hug and congrats!! 

    I'm 4 weeks behind you and counting the days until the last infusion.  My eyebrows and lashes are sparse but I finally found a wig I like.

    Hope everyone else is doing great.

    Smile

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    Congratulations, Joan!  Laughing

    I'm x'ing off the calendar days till my last scheduled Taxol/Herceptin weekly, which is slated for June 2nd. One day at a time!

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  • joansf
    joansf Member Posts: 103
    edited April 2010

    Thank you so much everyone for the good wishes!!  

    To Lovemygarden--it sounds like you  had a rocky start--I hope it's going better.

    best to all xoxo Joan 

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  • Lucysmom
    Lucysmom Member Posts: 5
    edited April 2010

    Does anyone have any information on diastolic dysfunction on the taxol/herceptin regimen? I finished TH 5 weeks ago; I am currently on the every-three week herceptin portion of the DF study. My post-treatment echo showed stable ejection fraction at 60%, but new diastolic dysfunction. Coincidentally, I have new (last 3 months) marked increase in my diastolic BP..systolic stable between 105-120, but diastolic up from baseline 60's to mid 80s-low 90's. I have trolled everything I can find on the internet and am coming up empty-handed. Since the mechanism of cardiac toxicity on herceptin seems to be unknown, I am hoping this is not an early indication of heart failure or other problems. Thanks for any info! 

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  • roso88
    roso88 Member Posts: 31
    edited April 2010

    lucysmom - i'm sorry about your echo readings.

    i will ask my onc next week about diastolic dysfunction and see what she has to say.  it'll be good for me to know as well since i have my follow-up echo scheduled in about 4 weeks.

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  • joansf
    joansf Member Posts: 103
    edited April 2010

    Lucysmom--I hope everything's OK.  I have to say I was so frightened about having her2 pos cancer, that I didn't ask any questions about toxicity to the heart.  But tomorrow is my first all-Herceptin infusion, and I have an appt with my onco.  Friday I have the echo--I'm not sure if that's regular protocol or for the study or both.

    Anyway, this seems like a good time to get up to speed about the heart risks.  Better late than never.  Please keep us posted on what you find, roso, and I will check in on what I hear. 

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  • NanaA
    NanaA Member Posts: 293
    edited April 2010

    A Genetech rep  who is also a nurse practicioner spoke at a bc support group here tonight and she said the statistics for heart problems with herceptin now that they don't do the AC with it is down from 2% to .04%.   The original study with herceptin was done with AC as the chemo  Now most done with TC or just taxol. Most of the heart problems clear up with just stopping or taking break from the herceptin.  One of the questions she asked me when she found out I finished my 1 year just 3 weeks ago was if I had to take a break because of ejection fraction. (no) She was very encouraging about how fast new drugs are coming on the market or into testing compared to just 10 years ago. I did not get a chance to ask about these new finding on 3 different groups of her2 with different possible outcomes that is one of the other forum topics here.  She also had a comprehensive list of possible Se's of herceptin but was also very sure that we were all individuals and that herceptin would react different for each of us.  It was nice to hear someone say that.  It was an interesting evening.  Annette

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited May 2010

    LucysMom, roso88, and JoanSF:  Do please ask your onc about having a MUGA scan next time instead of the echo! My onc only prescribes MUGA scans (not echos anymore) because the MUGA scan results are significantly more accurate than what is obtained via an echo.

     If your next test is a MUGA you may be surprised at how much the results may differ from what your echos showed.

     I have only had the baseline MUGA scan so far (only at week 4 of my 12-week combo) and will have my second one between the end of the 12-weeks (June 2nd) and the start of my Herceptin-only phase.  

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  • newyorker1
    newyorker1 Member Posts: 10
    edited April 2010

    Hi!  I just found this site and I am part of the clinical trial at Memorial Sloan Kettering.  I understand that the clinical trial was extended to tumors up to 3cm and I just qualified.  I have my fourth round tommorrow and have been doing pretty well, not alot of side effects besides the hair.  How are you doing now thta you are finished?  Are you on homone therapy now along with heceptin or do you complete herceptin first?

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  • septembersong
    septembersong Member Posts: 287
    edited April 2010

    Hi newyorker1,

    I finished chemo in Oct. 2008, radiation treatments in Dec. 2008, and started hormone therapy (Femara) Jan. 1 of 2009 while doing my once-every-three-weeks Herceptin treatments. So the short answer is that I did HT while doing Herceptin.

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  • newyorker1
    newyorker1 Member Posts: 10
    edited April 2010

    SeptemberSong, Thanks for answering my question. How are you doing on the hormone therapy?  I was told I would start with tamoxifen.  I haven't heard of femara, is it for estrogen positive cancers?

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  • septembersong
    septembersong Member Posts: 287
    edited April 2010

    newyorker1,

    Femara is for post-menopausal women with ER+ cancers. My understanding is that if you're post menopause and ER+, you're put on an aromatase inhibitor--Femara, Arimidex, or Aromasin.

    If this isn't right, I hope someone will provide the correct information!

    I'm doing fine on this therapy. Occasional hot flashes, but nothing that I'd call a problem. I have a problem with arthritic knees, and I switched temporarily to Aromasin to see if the drug was exacerbating my knee pain. No difference. So I'm tolerating this medication well.

    I'm sure other posters can fill you in on their experiences with Tamoxifen. 

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  • newyorker1
    newyorker1 Member Posts: 10
    edited April 2010

    September Song, Thanks for the info and I am glad to hear that you are doing well on the hormone therapy.  I have been reading alot of women deciding not to go on tamoxifen because of the side effects and I am just starting to look at this.  How long will you be on the Femara?

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  • HES112
    HES112 Member Posts: 29
    edited April 2010

    Hi New Yorker 1...I am the originater of this post...just hopped back on as I was off for a few weeks and dont get on as often as I would like.  I was on Tamoxifen for a year and a half...started in October 08 and just stopped.  I had a lot of spotting on Tamoxifen, and when I finally got my period back in January 10, started bleeding very heavy.  I had a fibroid which I believe was due to the Tamoxifen.  I ended up having a hysterectomy two weeks ago as I was severly anemic due to heavy periods.  I just started Aromasin.  Only thing I feel at this point which I had prior is the night sweats and occassional hot flashes....think I was getting these also when going through chemo.  Welcome and glad to hear you are doing well and I guess its great news that it is extended to women with 3 cm tumors...

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  • newyorker1
    newyorker1 Member Posts: 10
    edited May 2010

    Hi!  Thanks for the data.  How are you doing after your hysterectomy?  I am definitley getting night sweats and hot flashes now.  Never experienced that before.  I am just starting to gather data on Tamoxifen and other hormone therapies. I had a problem with large fibroids prior to my diagnosis and the fact that you feel tamoxifen caused your fibroids makes me even more concerned.  The chemo has basically put me into menopause so I don';t have any problem with fibroids now.  I have completed 9 out of 12 Taxol/herceptin treatments and I am heading to radiation after.  I am still a bit nervous about doing the radiation.  I have this picture of the radiation just shriveling up my already small breast.  After the lumpectomy I am OK with how things turned out but I am concerned that the radiation will change that.  I had consulted with a plastic surgeon concerning a masectomy with breast reconstruction earlier and he was so negative on radiation and its effects on the breast tissue that I am still freaked out about it.  One last thing... Did you have any changes in your teeth while on chemo?  My enamel seems to be wearing off .  I never heard of this beofre but now thta I am researching it I see thta chemo has bad effects on teeth, not just motuh sores.  I was wondering if you or anyone else had this problem and if there is anything I can do about it.

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  • jejjylynn
    jejjylynn Member Posts: 1
    edited July 2010

    I am 36 years old and live in Holden, ME - just diagnosed with Stage IIA, HER2 POS, ER POS, PR POS, grade III IDC tumor in May 2010.  I am going to be starting the Taxol/Herceptin trial in a couple of weeks. I am having an echo next week to make sure my heart function is okay and am having a porta cath put in on June 21st.  Is there a reason you are traveling to Dana Farber and not having treatment at Cancer Care of ME?

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