HER II and Taxol Trial

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HES112
HES112 Member Posts: 29
edited June 2014 in HER2+ (Positive) Breast Cancer

I recently finished treatment that was a trial through Sloan Kettering.  I received 12 weeks of Taxol and Herceptin and then Herceptin every third week for the year.  I believe from reading on this site that many have received this treatment plan,but maybe not part of a trial.  The trial was offered through Sloan Kettering and Dana Farber, for tumors under one centimeter with no node involvement and HER II positive.  Wondering if anyone else has been part of this trial, and their thoughts...

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  • suemed8749
    suemed8749 Member Posts: 1,151
    edited November 2009

    Hi HES - I had Taxol/Carboplatin/Herceptin in 2008; finished Herceptin every 3 weeks in April. My treatment wasn't part of a trial. There's a great TCH thread here, but the T is Taxotere (but they let me on anyway!) There seems to be some differing views of how to treat a diagnosis like yours. I think you certainly made a wise choice of Taxol and Herceptin.

    Welcome to bc.org! Sue

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  • septembersong
    septembersong Member Posts: 287
    edited November 2009

    I was (am) part of this trial at Dana-Farber. I finished chemo (Taxol/Herceptin) last October, radiation last December, and my year of Herceptin this past July. I started a five-year course of Femara Jan. 1. I've had problems with neuropathy in both feet as a result of the Taxol. Otherwise, the treatment was relatively easy. (Not that any of all this can really be called easy.) But I tolerated treatment well.

    How about you?

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  • HES112
    HES112 Member Posts: 29
    edited November 2009
    Hi...September song seems as though we were on a similar path...I finished Taxol Herceptin end of September, and radiation in February and Herceptin in July as well. I am on Tamoxifen.  I also tolerated treatment well aside from the diagnosis and the loss of hair.  Throughout the whole time I kept thinking ok...that wasnt too bad or not as bad as I thought...Now that we are through with treatment my mind occassionally will race and think of things which is not so wonderful.  Anyway I did just have blood work and a visit with the oncologist...first since the last Herceptin infusion in July and all is well.  And my first mammography and thank g-d all was well with that.  I have occassional neuropathy but not bad.  Hi suemed...thanks for the welcome.  I have spent some time reading the different questions and decided to join and be a part of this wonderful forum.Smile
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  • septembersong
    septembersong Member Posts: 287
    edited November 2009

    Yes, our paths are very similar. I see my oncologist on Monday (she sees patients every four months for the first two years, although I think the protocol is every six). I also have my second post-treatment mammogram. They were looking very closely at calcifications and some "nodularity" in the unaffected breast last May, and ordered a six-month follow-up. I'm a little anxious and eager to get this behind me.

    I'm also enrolled in the LISA trial, which measures the effects of nutrition and exercise in early-stage b/c patients. I've lost 20 pounds since June and am thrilled. It's a telephone intervention.  I talk with a lovely young woman every month from Ottawa, who for some reason has more influence on me than family, doctors, and a great nutritionist combined. 

    I'm glad you had a relatively easy time with treatment and that the news is good! Onward and upward.

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  • LJ13-2
    LJ13-2 Member Posts: 235
    edited November 2009

    I had dose dense AC then the Taxol / Herceptin protocol you describe, but was not part of a trial.

    However, I was node positive.

    I'm sure this is a trial because of the staging of the participants, not the frequency.

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  • joansf
    joansf Member Posts: 103
    edited December 2009

    I'm so grateful to be in contact with women who received the same treatment as I am about to.  My oncologist tells me the regimen--Taxol and Herceptin weekly for 12 weeks--is 'well-tolerated.'  I'm wondering if you can tell me what your experience was...how well were you able to carry on your normal activities?  I'm concerned about how I'll fare--my treatment starts on Jan 7.  Thank you and all the best.

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  • bluejay1
    bluejay1 Member Posts: 47
    edited December 2009

    I just missed getting into this study, but another oncologist I saw used the same treatment anyway: 12 weekly treatments of taxol/herceptin, followed by nine more months of herceptin every 3 weeks.

     I am also very curious about this study, as some oncos said it was "risky". 

    The study is still going on, so I assume they have had some positive results or at least have not stopped the study. 

    BTW, my tumor was 1.1 cm, but the study doctor had said that size still qualified me (had I taken part)... I believe the limit was 2 cm not 1 cm? 

    The taxol was hard, but I have nothing else to compare it to. I had much fatigue, and even after it was over, I had some moderate fatigue lasting for 12 months. Also - mild neuropathy that is pretty much gone now (it took a long time). It also put me into menopause. I am now 16 mos past treatment, and I am about 90% recovered.  

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  • kwajkid
    kwajkid Member Posts: 7
    edited December 2009

    I did that protocol but had to quit the Taxol after 7 weeks as I developed pancreatitis from it.  Continuing on with Herceptin now and radiation.  Until the pancreatitis, it was as my oncologist said also, "well tolerated".  I was able to work full-time but went straight to bed after work due to fatigue. 

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  • joansf
    joansf Member Posts: 103
    edited December 2009

    I am signed up for taxol herceptin Jan 7 as I noted above.  But because of some concerns about (poor) communication with the oncologist, I just met with a breast cancer surgeon to pick his brain.  He thinks that Taxol may not be aggresive enough for a grade 3 tumor with a 40% proliferation faction.  I am going to get a second opinion.  

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  • Mocity
    Mocity Member Posts: 451
    edited January 2010

    I had the same treatment but was not part of a trial.  I had weekly Taxol + Herceptin for 12 weeks and then Herceptin every 3 weeks.  I finished the Taxol in Jan09 and finished the Herceptin in Nov09.  I had neuropathy and fatigue from the Taxol but made it through.  I also had pretty bad nail damage on both my hands and feet.  My tumor was small at .4cm but because of my age and HER2 status the chemo + Herceptin was called for.

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  • NanaA
    NanaA Member Posts: 293
    edited January 2010

    I was not part of the trial but the 12 weekly taxols and herceptin every 3 weeks is what I was scheuld\ed to do, but I only made it thru 9 weeks of the taxol, the neuropathy in my feet and hands got too bad to continue.  I still have 4 more herceptin treatments before I am done in March.  I did 37 radiation treatments after the chemo and finished with them the middle of Sept.  I had my first maammogram in December since the BC was found last Jan. Everything was OK  they even did an ultrasound of the side that had the BC and they said I was good for a year, but I imagine the onc will want another one in 6 months.   They found nodules on my thyroid and lung when they did the CT to set up my rads, but both turned out to be nothing.  At this point I consider myself to be cancer free and hope to remain so.  Annette

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  • suzieq60
    suzieq60 Member Posts: 6,059
    edited January 2010
    CristlC: You are exactly one of the patients they are doing these new trials for. For a tumour under 5mm they usually do not recommend chemo - it's a really grey area. Hopefully the trials will prove some benefit to girls like you and it will become standard practice. There also haven't been any Herceptin alone trials, so to get herceptin you have to suffer the chemo with it. You're lucky your onc chose to give you this treatment.
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  • Vegasmom
    Vegasmom Member Posts: 33
    edited January 2010

    I finished my 12 weeks TCH chemo the end of sept. 09.  and will continue with the herceptin (every 3 weeks) until July 2010.  My tumor was only .3mm but I was HER2+, grade 3.  I wish I had known about this trial.  My tumor size was a very grey area.   I got 3 onco. opionions.  2 said do chemo & 1 no chemo.  My onco. said you do not want to mess around with HER2+, so it sucked, but I wanted to be around a long time for my kids.  And I wanted to know that I did everything I could to fight this.  Joansf, just wanted to let you know I tolerated this very well.  If you would like to talk more or have any questions you can PM me.  I am really curious to see what this study will show.    

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  • joansf
    joansf Member Posts: 103
    edited January 2010

    Dear Vegas Mom,  I delayed my treatment--I finally start on Thurs--to get second opinions.  I went to another university hospital.  The onco there said that with a small tumor--.5cm--the choice to have chemo was up to me!  But if I did have chemo there it would be a standard regimen followed by the Taxol/Herceptin.  I spoke to another doc who said to absolutely have chemo because of the grade 3, high Ki67 and Her 2+.  He said the size didn't matter.  But he would not make a final recommendation about during the trial vs doing standard chemo and then taxol.  I decided to go back to the original hospital and do the trial.  I hope it's the right choice.  It is such a grey area and it's hard for us as patients when the doctors are having difficulty reaching consensus.  I guess on the positive side, we are lucky to find these tumors when they're so small.  (Mine showed up on a pre-surgery MRI--the 'original' tumor that turned up on the mammo was a 1.1 cm ER+PR+HER-)  Thanks, and here's to successful treatment and good health for both of us!

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  • joansf
    joansf Member Posts: 103
    edited January 2010

    Dear Vegasmom--My treatment started on thursday, I would love to talk more--I have a lot of questions.  How do you PM on this site?

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  • kimbers
    kimbers Member Posts: 26
    edited January 2010

    Hi ladies,

    I just started the trial this past Thursday (12 weeks of Taxol and Herceptin, then Hercetpin every 3 weeks). I had a my port put in on Wednesday and had my first infusion on Thursday. I still feel pretty good just tired. I didn't need my anti-nausea drugs. I am taking Vitamin B6 and Glutamine to help lessen the neuropathy (I hope).  I have 11 more infusions to go but was happy to finally get started. 

     Kimber

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  • joansf
    joansf Member Posts: 103
    edited January 2010

    I started on Thursday as well.  Same regimen.  No port so far--the nurses encouraged it, but the onco says to try going without, as I have 'good veins'  (we'll see).  No nausea either, although I did follow the nurse's advice to take a pill first thing for a couple of days.  (Some 'other' stomach upset, though.)  I've heard a lot about glutamine, but not b6, so thanks.  I am feeling achy, though, which I've heard Herceptin can cause. Friday was great, but I felt really flu-ey on Sat--it's gotten better since but not great.  But, given the season, they also gave me a flu shot, so I'm wondering if it could be a side effect from that (let's hope).  Can I ask what other ladies' experience was with this Herceptin side effect of body/muscle ache and how you coped?  Thanks.  All the best, Kimbers--one down, 11 to go.  I am so relieved to get started!  

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  • PS73
    PS73 Member Posts: 469
    edited January 2010

    Are you sure this is a trial?  I would have had to sign off on it if it was a trial.  At one point before I decided to do AC, the TCH had the avastin trial available with it and I had to sign off on it but I never signed off on the taxol/herceptin.  I did AC DD and taxol for 12 weeks with herceptin and am now doing herceptin every 3rd week until sept. What type of cancer do you have?

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  • joansf
    joansf Member Posts: 103
    edited January 2010
    Dear ps73--There is a trial going on, but you don't need to be in the trial to receive the treatment.  I did not have AC first, and I think the trial may be to follow the effectiveness of Taxol/Herceptin alone--without any other chemo.  Maybe someone else knows that for sure?  (I am Her2 positive ER/PR negative.)  
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  • PS73
    PS73 Member Posts: 469
    edited January 2010

    Oh ok.  Interesting.  So why didn't you have ac or tc first being grade 3?

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  • SharaD
    SharaD Member Posts: 100
    edited January 2010

    http://www.bioprodmag.com/News/Feeds/2009/12/disease-research-mayo-clinic-researchers-say-breast-cancer-survival/

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  • meshell
    meshell Member Posts: 30
    edited January 2010

    hello ladies,

    Im just wondering how many of you lost your hair on taxol/herception? I did AC- lost all my hair and then had a short break from chemo to have a surgery and during that break my hair grew back! Just wondering if everyone loses their hir from the taxol?

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  • septembersong
    septembersong Member Posts: 287
    edited January 2010

    Meshell,

    I had Taxol and Herceptin weekly for 12 weeks. I lost my hair starting at week four, just as my oncologist predicted.

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  • kimbers
    kimbers Member Posts: 26
    edited January 2010

    Hi ladies,

    I had my 2nd infusion last Thursday and so far so good. I am taking the Zofran for a couple of days after in the morning. I have not felt terrible and still have my hair. That is interesting to know about week 4. My port is great for chemo but but it does bother me sometimes. 

    Joansf - how did your 2nd one go? 

    Kimber

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  • joansf
    joansf Member Posts: 103
    edited January 2010

    Hi ladies!  I'm glad you did well, Kimbers.  (Are you in SF too, if you don't mind my asking?)  My second infusion was better--I had had IV Benadryl in my pre-meds for round 1--I guess we all do.  It gave me terrible restless legs, and pain at my IV and down my hand.  This week, they gave me the Benadryl in a pill, so I didn't have that reaction.  I also feel better than last week.  I got a flu shot at the first infusion, and I had terrible muscle/body ache that I thought was from the Taxol. But this week, it's gone, so blame it on the flu shot.  I stayed in and slept a lot yesterday, and I'm not too energetic today, but what I found last week was that by Monday, things were pretty back to normal.  I didn't have any stomach problems--I did take the Zofran, too.  My infusion nurse said to take it first thing so the nausea doesn't get any chance to take hold.  Best, Joan

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  • kimbers
    kimbers Member Posts: 26
    edited January 2010

    I am feeling tired today too! Maybe it is the weather also (rainy).  During my infusion, the benadryl makes me really sleepy! The first time, I could hardly keep my eyes open. My nurse did ask my about the restless leg syndrome but I didn't experience. Joan, glad the oral benadryl worked for you. Yes, I am at UCSF. My infusion day is Thursday. I live about 45 mintues from the city.  I have 3 kids under 10 which keeps me busy!

    Kimber

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  • Mouse6
    Mouse6 Member Posts: 246
    edited January 2010

    Hi Everyone,

    Any advice for someone starting Taxol next week? I've done 4 rounds of AC, now starting Taxol with herceptin thrown in on #6 for a year. Why do some of you have another drug with the Taxol?

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  • joansf
    joansf Member Posts: 103
    edited January 2010

    Hi Ladies!  to Mouse:  I only have Taxol and Herceptin, but the Herceptin started with the first infusion--I don't know if that helps.  to Kimber--I'll keep an eye out for you at UC--I heard someone had started the same day as I did.  Best to all, Joan

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  • Lucysmom
    Lucysmom Member Posts: 5
    edited February 2010

    I am part of the DanaFarber study. I had infusion #8/12 of the weekly taxol/herceptin today. I read the research protocol and had 4 second opinions and did a ginormous literature search before picking this regimen. Although the emotions surrounding a new diagnosis and treatment make it hard to be fully objective, I have a ton of information about the rationale for this treatment and pros/cons. I am also a physician and can speak from the perspective of reviewing outcome data and trying to interpret it for ones self.  A lot of questions about this protocol and similar taxol.herceptin regimens are answered in earlier posts, but I'm happy to share how I came to choose this chemo regimen. Having an amazing oncologist helps, too! I am looking forward to participating in this discussion board. I've learned a lot just reading it over the last few months.

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  • kimbers
    kimbers Member Posts: 26
    edited February 2010

    HI ladies,

    I just finished #3/12. So far I have been feeling OK. Just some fatigue. 

    Lucysmom - how have your symptoms been? Are some of them cumlative?  When did you lose your hair ( I still have mine).

    JoanSf- How was last Thursday? This Thursday is going to be a long day...I meet with my oncologist and don't start my infusion till the afternoon. 

    Kimber

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