Taxol/Herceptin

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  • orange1
    orange1 Member Posts: 930
    edited August 2009

    Hi Karina

    I had TCH x 6 (same as in the BCIRG trial).  I worked the whole time (desk job, understanding boss and co-workers).  I did not have a port - I didn't want one.  Now my veins are ruined.  Others on these boards  did not have a port and did not have ruined veins.  Unfortunately, I don't think there is a way to tell ahead of time how your veins will react.

    Good luck with your choice - let us know what you decide and how you're doing. 

  • manue
    manue Member Posts: 34
    edited August 2009

    Hi CristlC, after a lot of reading and soul searching I'm taking the clinical trial that my oncologist offered: TH (Taxol/Hercepting) weekly for 12 weeks then Herceptin for the year...I have more decisions to make down the road but for now I've got this one down. I had an infection on my right breast so my post placement was postponed until next week. 

     Orange1, thank you so much for all the info.

    Big hug, Em. 

  • Mocity
    Mocity Member Posts: 451
    edited August 2009

    Em,

    Glad you have made your decision.  That is one of the hardest parts.  I did the same regimen - 12 weeks of Taxol/Herceptin for each week and then Herceptin every week for a year.  My last Herceptin will be this Nov09.  I have a port in my right arm.  I worked the whole time.  It got tougher near the end but do-able for sure.  I starting losing my hair around day 16 and shaved it soon after.  PLEASE feel free to ask me any questions if I can help you during this time.  You can post here or PM me.  I am still confused on why you refer to it as a "clinical trial".  This regimen is used more and more these days and mine for sure wasn't part of a trial.  When do you start?

    GOOD LUCK with all this and take care of yourself!

    Cristl

  • rose847
    rose847 Member Posts: 27
    edited October 2009

    Hi Chrisi,

    I am currently trying to decide between Taxol/Herceptin, TCH or no treatment.

    A few questions. What did you do about the neuropathy issues from the Taxol? Did they go away or are you still having problems? Did they continue on the Herceptin? I already have some neuropathy due to fibromyalgia that cycles in and out.

    Any side effects from the Herceptin? Have they monitered your heart during the 12 treatments?

    Also, why did you choose to get the port in your arm instead of your chest?. I just had a bilateral mast and was told it would have to go in the chest and I don't see how when I am in so much pain in the entire area.

    Read my profile for more info about my treatment problems. Thanks and hope you are feeling well. Also great that you are almost finished.

  • Elaine_1234
    Elaine_1234 Member Posts: 6
    edited October 2009

    Hi,

    I am a first time user, I hope I reach all of you who are Her-2+.  What I am trying to come to terms with is that everything I read seems to say that being Her-2+ means that the cancer will definitely return. What is the common thought? I had an allergic reaction to taxol and had to go to a different drug.  I was in the hospital for 2 wks.  Herceptin was a cake walk compared.

    Peace,

    Elaine

  • Hopbird
    Hopbird Member Posts: 387
    edited November 2009

    Elaine, I encourage you to look at some of the other Her2+ threads.  Her2+ cancer is more aggressive, but what I understand and what I have read here says that Herceptin has leveled the field, because it does such a good job of stopping the Her2.  It is a reasonably new drug, especially for early cancer, and the doctors are still figuring out new ways to use it to combat the cancer. 

  • Cafelovr
    Cafelovr Member Posts: 1,534
    edited November 2009

    Believe it or not, my onc told me that being HER2+ was a GOOD thing. When I asked why, he said that we positive girls have one more line of defense that negative girls don't have...Herceptin. I'm taking AC once every two weeks for 8 weeks and TH (Taxol) every week for 12 weeks followed by H every 3 weeks for the year. My chemo is neoadjuvant; my surgery will be in the spring followed by 6 1/2 weeks of rads then hopefully reconstruction. The onc also said that heart problems shouldn't be too much of an issue as long as the A doesn't mix with the H. I feel like I'm in high school chemistry again!

  • Mocity
    Mocity Member Posts: 451
    edited November 2009

    Melody,  I am sorry it took me so long to respond.   Have you made your decision?  I think the decisions are one of the hardest parts of all this.   I did 12 weekly doses of Taxol/Herceptin and then herceptin for a year.  My last Herceptin treatment was last week and the port comes out this Wed.  The neropathy hit me around week 7-8 and it was primarily in my fingers.  It is gone now and stopped once the Taxol stopped (did not continue on the Herceptin).  Every now and then I have some tingling but not bad.

    Yes, they have monitored my heart with scans and I haven't had any issues.  I am 38 so they didn't monitor me as closely on this as others.

    I haven't had too many side effects from the herceptin.  I have gained weight and my nails are still very weak but that could be residual from the Taxol.

    My Onc gave me a choice between having my port in my arm versus my chest.  It isn't very common ... or at least I had a hard time finding many that did it this way.    My Onc said he suggests this when women have just had a bilateral mastectomy because it just keeps something else off the chest.  He also thinks it is easier to cover up.  I haven't had any problems with it other than it stays bruised and I hit it with my purse occasionally.  If you want it there ask them for it.

    Please feel free to ask me any questions.  I would hope I can help.  Feel free to PM me too.

    Take care of yourself,

    Cristl

  • joansf
    joansf Member Posts: 103
    edited December 2009

    Thank you all so much for so much information.  I would like to ask more about getting a port.  My doctor says my veins are good, but I wonder how that works over 12 weeks of treatments.  Thanks, Joan

  • LouLou40
    LouLou40 Member Posts: 180
    edited December 2009

    I found the weekly Taxol and 3 weekly Herceptin very easy, the only SE I noticed from the Taxol in the first 6 weeks was tingling in my toes by week 8 I had some numbness in my fingers and joint pain, but within 3 weeks of finishing the Chemo the SE's had gone. I continued to excerise throughout treatment.

    I'm continuing 3 weekly Herceptin which I have no SE's from, work full time and busy Mom of 3 little ones. I have a heart scan every 3 months, which the results haven't changed.

    Also started Arimadex and have no side effects from that either - maybe a few new aches and pains but too busy to notice.

  • newyorker1
    newyorker1 Member Posts: 10
    edited March 2010

    mattscot, Hi!  I was wondering if you did the clinical trial at Sloan.  I was told I did fit the criteria for the clinical trial but my oncologist didnt recommend it because of the tumor size which is 3cm and felt I should get the standard treatment of AC with Taxol and herceptin after.  I am intersted in the clinical trial as I am node negative and am doing lots of nutrition and detox to handle the body as well.  I also got a second opinion from another oncologist who recommended TCH protocol.  I would like to do the TH but I am a bit afraid as two oncologist recommended more treatment for me. Does anyone have anything to share on this as I am trying to decide which treatment to do.

  • septembersong
    septembersong Member Posts: 287
    edited March 2010

    Hi newyorker1,

    This is such a hard decision--I'm in the Taxol/Herceptin trial at Dana-Farber, and remember how confusing and frustrating it was to sort out all the information and opinions during the early days of diagnosis and treatment. I remember consulting an oncologist (who did not treat breast cancer patients) when I was trying to decide what to do. He told me to trust my gut. My gut was telling me nothing except that I was scared and this was could be a life-altering choice. 

    You've had opinions from two oncologists, both of whom recommend a stronger regimen than Taxol/Herceptin. I'd suggest you question both carefully about their reservations for recommending the Taxol/Herceptin trial. I don't know the role of tumor size in any of this. My inclination (and of course all of this is personal and individual) would be to listen to their concerns and choose the least toxic protocol with the best chance of success. From what you've said, it doesn't sound like the T/H trial is among those.

    You'll be having chemo of some kind, and that means a year of adjustments and changes to your life. But it will end, and at least you'll have the confidence that you made the best decision you could with the information available to you at the time.

    Sending you wishes for good health and peace of mind!

  • newyorker1
    newyorker1 Member Posts: 10
    edited April 2010

    Dear September Song,  Thanks so much for the great advice.  I did decide to do the clinical trial and I really did look at all the information and switched to the oncologist that felt fine with me doing the trial. She felt that if I was not estrogen positive she would also recommend not doing the trial but she felt that with 5 more years of hormone therapy it was a good choice.  Tommorrow is number four and I can say so far that it hasn't been as bad as I feared.  If my hair wasn't falling out it would be quite doable. Thanks again. How are you? 

  • septembersong
    septembersong Member Posts: 287
    edited April 2010

    Hi NewYorker1,

    Congratulations on making your decision and moving ahead with treatment! I've heard very positive things about Sloan-Kettering.

    I'm good. I've started an exercise program, run by a physiologist from Dana-Farber, and it's given me a real focus as I move away from treatment. I have neuropathy in both feet from the Taxol, but this isn't a problem for most women--from what I understand this side effect usually goes away shortly after treatment ends. It's annoying, but manageable.

    And I can reassure you that the hair comes back, and it's wonderful! Mine is thicker now than before. I'm keeping it short and it looks good. I would never have tried this length if nature and Taxol hadn't taken over!

    Good luck and stay well!

  • newyorker1
    newyorker1 Member Posts: 10
    edited May 2010

    Hi September Song!  Glad to hear you are doing well.  Haven't been back ina while.  I just completed my 9th treatment out of 12!  I am very happy with the care I have been getting at Sloan Kettering.  Doing pretty good so far and only have three more to go.  Recently I noticed some changes in the enamel of my teeth and I started to research this out.  I was never told that chemo can really mess up your teeth.  So now I am trying to find out what I can do about it.  Did you have any problems with your teeth?  As far as the hair goes, yes I guess I will be doing a short cut too!  Its been many years since I have worn it that way. 

    Keep up the exercise and be well.  

  • my2boys
    my2boys Member Posts: 339
    edited May 2010

    I am with MSK in New York and I am currently finishing up A/C treatments.  I will be starting Taxol/Herceptin x 12.  They recently switched my treatment plan from Taxol/Herceptin x 4/bi-weekly,  to Taxol/Herceptin x 12/weekly. 

    I was Stage IIB and completed TCH X 6 last February, but cancer returned, local recurrence within a few months of completing my one year of Herceptin.  I don't know what my stage is, just that it was a local recurrence, with no mets.

    I am hoping that this regimen will knock it out for good.  My oncologist is confident that the weekly Taxol/Herceptin will be better tolerated than the bi-weekly regimen.  She has told me to continue with my summer plans for vacation/recreation etc.  The A/C was not as bad as I thought it would be.  I am tolerating it much better than the TCH.

  • GAgirl01
    GAgirl01 Member Posts: 61
    edited June 2010

    Hi! I'm new to this forum board; I recently had to play my own advocate, like most of us have to do, and seek a second opinion regarding my chemo recomendation.  My MO had recomended TCH x 6 @ 3wks w/ Hercp. 1yr. (the standard).  My gut was telling me from the start this wasn't right for my BC.  I just couldn't find peace in this.  At our first meeting, I asked her about any trials for TH weekly and she said she didn't know of any...later I find out this wasn't true. First, major problem! My BS referred me to another MO who was a breast specialist & I met with her yesterday.  I loved her!  From the very start...she went over ALL of the options, allowing me to decide what I thought was best for me.  At the end of the meeting, Taxol/Herceptin weekly for 12weeks (the Dana Farber trial) is the option I chose.  This was the choice I originally wanted & felt like was best for me to begin with.  She also felt like it was going to be successful for my type tumor ( 8mm, node negative, HER2+) I walked away totally at peace for the first time through all of this.  4 weeks ago I underwent a BMX, and now, finally I am ready to complete this journey!!

    I can't say it enough...If you feel strongly in your gut about something...you feel this way for a REASON!  Ask questions until they give you the answers!  Be your own advocate!  Speak loudly and firmly...it's your body and your life!

    Still scootin'

  • pmellon
    pmellon Member Posts: 38
    edited June 2010
    Hi GAgirl01 - Good for you!!  I feel like second opinions are so important and even more so being your own advocate.  I also chose the taxol/herceptin trial last year as a result of a second opinion out of Dana Farber.  Not looking back and feeling fantastic.  All of the best to you with your treatment. Looking back, it goes by fast and you will be so happy when it is done!
  • GAgirl01
    GAgirl01 Member Posts: 61
    edited June 2010

    pmellon~ Thank  you for the encouragement!  I'm ready to get moving with this and get it behind me.  My bmx has healed SO well; the scars are minimal.  My PS said only 2-3 more fills and my TE's will be at maximum capacity!lol! This should put me right about the same time my chemo is finishing up, & to be able to schedule my exchange surgery.  I'm hoping to have my port taken out at that same time.  I think I will be up to having Hercp. every 3wks without the port. Anything to get rid of this "growth" on my clavicle!  So glad to hear your doing well and the trial was successful for you!  This is SO encouraging!  Another battle WON!!

  • HES112
    HES112 Member Posts: 29
    edited June 2010

    Hi there GA girl01...I also had two different treatment options with a very similar diagnosis...I was diagnosed in May 08...tumor less then 1cm...no node involvement grade 3 0/8 nodes...only difference was that I am ER positive...I was offered TCH....and then ended up going with the Taxol Hereceptin Trial for 12 weeks through Sloan.  After the 12 weeks I received Herceptin every third week.  I was very perplexed over what to do...but after many conversations with experts in the field and many hours spent researching I chose the trial and I have never looked back..I have been doing well...Hope your journey continues to be a good one...

  • newyorker1
    newyorker1 Member Posts: 10
    edited July 2010

    Dear HES 112, Hi!  I just completed my 12 weeks of Taxol and Herceptin and am now on herceptin every three weeks.  I am about to start radiation treatment.  I am concerned as the radiation oncologist told me that the beam will hit a little of the heart becasue of the location of the tumor site.  I know the risks of herceptin and heart damage..,. Am wondering if you had radiation as well and how you made out.  Thanks, NewYorker1

  • GAgirl01
    GAgirl01 Member Posts: 61
    edited July 2010

    newyorker1 & HES112 ~ Thank you for the words of encouragement!! I'm 4wks into the TH trial and this Tues. I go for #5.  So far I'm feeling very good.  Very little se's; I'm still running daily and working my regular schedules.  I've been using the pcc's (cold caps) so I haven't had any hair loss (shedding has been very minimal-what I would consider to be normal for me)  Fatigue hasn't been an issue either. I won't have to have radiation, I had a bmx prior to the start of TH.  I will have to schedule my exchange though, I currently have te's.  They've been a real pain...can't wait to get rid of them.  Would you mind if I ask you a coulple of ?'s...did either of you loose eyebrowns or eyelashes with TH treatments? If so, do you remember around when?  I'm really struggling with the possibility of this and I know all of the above could happen, I just want to know @ what point to expect it if there is a way to do so.  Thanks ladies, without each other I think we all would feel totally helpless!

  • HES112
    HES112 Member Posts: 29
    edited July 2010

    Hi NewYorker,

    I also had radiation, but my tumor was on the right side outer quadrant, so I did not have any heart involvement.  It was a fairly easy process, compared to everything else.  Keeping you in my thoughts and prayers.....

  • HES112
    HES112 Member Posts: 29
    edited July 2010
    Hi GA girl,  I think your doing great with the pcc's.  I did not know about them when I started the Taxol and Herceptin.  I lost alot of hair by the fourth treatment and just decided to take it off at that point as it was too overwhelming for me to watch it fall out.  As far as my eyebrows...maybe I lost a little.  I definately lost more in the way of the eyelashes toward the end of treatment.  I did not lose them all. Keep strong and keep smiling....Cool

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