her2new and herceptin

JKAlley
JKAlley Member Posts: 84
edited March 2014 in Breast Cancer #1
Hi to all. I'm a newby here, diagnosed in Dec. and taking my last AC next week. I'm in a clinical trial because my her2neu is at a 3+. I'm going to be starting on taxol and herceptin after I'm through with AC for 9 weeks, and have to continue on the herceptin for a year, even through radiation. I have 2 questions. First, how hard is taking taxol once a week compared to AC every 3 weeks. The "red devil" is taking everything out of me, yet I'm still trying to work, (I'm a single mom, I have to). I'm hoping taxol will be easier. My second is more of a fear of the her2neu thing. When I found out I had to take herceptin for a year, I wanted to rethink the clinical trial, but my Dr. told me with the 3+ level of the her2neu, that he "strongly suggested" I do this. From what I've read, and what the Dr. told me, this has shaken me pretty bad. I've kept a good attitude, and trying to be strong, but inside I'm scard to death. Any one else dealing with this her2neu and herceptin.

Comments

  • inkblot
    inkblot Member Posts: 698 Member
    Hi JK:

    I didn't have Taxol or Herceptin as part of my treatment, although I was also a Her2, three plus. I think a lot of the criteria for the Herceptin Trials depends upon your particular cancer...stage, grade, size of tumor, etc.. I would urge you to get a 2nd opinion, if you haven't already. It can help relieve some of the anxiety, when another medical oncologist, not affiliated with your current doctor at all, agrees completely with the reasons for having it. Particularly if you just marginally meet the criteria for the trial. A year is a long time and it's a lot to consider. I'm sure that some of the ladies here can share their experiences with Herceptin and give you a good idea of what to expect, in general.

    You can find some good, solid info at: www.nci.nih.gov It's the National Cancer Institute/National Institutes of Health Website and it contains all the latest information on treatment protocols, which you may find helpful.

    Hang in there, as that "red devil" is almost history for you, with just the one treatment remaining!!!

    Wishing you the best and please keep us posted.

    Love, light and laughter,
    Ink
  • isaiah4031
    isaiah4031 Member Posts: 240
    Welcome to the site. Sorry you have to go through this. I have taken the other stuff...only the A/C Yuck. Keep us posted. I'll be praying for you.
    Love, Jayne
  • jeancmici
    jeancmici Member Posts: 665 Member
    The herceptin is available before metastases only in a clinical trial as you are. You can also opt OUT of the trial. I am 3+Her2Neu and so are some others on this network. None of us have had herceptin. AC is supposed to be very good against Her2Neu and all of us got taxol. You could decide to hold off on it until if or when you get a recurrence which MAY BE NEVER! They have to have people in clinical trials to find out the best future treatments -don't let anyone push you into a clinical trial.I was in one - taxotere vs. taxol but I got the standard taxol so was no different had I not been in a trial.

    Good luck - and remember - even tho' you are part way in this trial, you can say: I want out of this and take just the taxol every week which shouldn't be as bad as AC. But do have good meds for pain. I liked Darvocet because it did not make me sleepy as Lortabs did. After all when I was free of pain,I did not want to spend the time sleeping!

    Best wishes,
    Jean
  • mutz
    mutz Member Posts: 12
    My mom's diagnosis sounds similar to yours. Her oncologist suggested that she partake in the clinical trial with herceptin. I have done a lot of research myself and we have a wonderful oncologist. We were all elated that she was in the group that will receive the herceptin. Most often if a drug has worked in stage IV cancers it has been promising in earlier stage cancers. It is a specific treatment for a specific biomarker of the cancer (Her2neu). Since Her2neu positive cancers are more aggressive, I think it is just one more tool to act aggressively against it. I hope that you and my mom both are cured with the help of herceptin and chemo!!
  • dee9191
    dee9191 Member Posts: 6
    Hi JKAlley: I've been thru the AC and the Taxol, and am currently on Taxotere and Herceptin. To answer your first question: Taxol is MUCH easier than AC. Your fatigue will gradually get a little better, your taste buds will improve, and you may even start to grow hair again! Secondly, about the Herceptin: I am on weekly Herceptin and have been for the last 9 months. I would STRONGLY recomend that you accept the clinical trial and take the Herceptin. Cancers that are her2nue positive are typically very agressive. For example, mine came back 3 months after I finished radiation--so my cancer survived AC, Taxol, and radiation. The Herceptin merely tells any remaining cancer cells not to grow bigger (well, in laymans terms anyway). I (and most women) have no side effects to the treatment. Some women have been on it for years. It's not like chemo or hormone therapy--for example, I get just a little bit tired the next day--but I am able to work and live my life. I have no other side effects. Since we never know when a recurrance may strike, taking the Herceptin may prolong your life long enough to raise your children. God Bless you and your family, Deanna
  • LynneK
    LynneK Member Posts: 2
    dee9191 said:

    Hi JKAlley: I've been thru the AC and the Taxol, and am currently on Taxotere and Herceptin. To answer your first question: Taxol is MUCH easier than AC. Your fatigue will gradually get a little better, your taste buds will improve, and you may even start to grow hair again! Secondly, about the Herceptin: I am on weekly Herceptin and have been for the last 9 months. I would STRONGLY recomend that you accept the clinical trial and take the Herceptin. Cancers that are her2nue positive are typically very agressive. For example, mine came back 3 months after I finished radiation--so my cancer survived AC, Taxol, and radiation. The Herceptin merely tells any remaining cancer cells not to grow bigger (well, in laymans terms anyway). I (and most women) have no side effects to the treatment. Some women have been on it for years. It's not like chemo or hormone therapy--for example, I get just a little bit tired the next day--but I am able to work and live my life. I have no other side effects. Since we never know when a recurrance may strike, taking the Herceptin may prolong your life long enough to raise your children. God Bless you and your family, Deanna

    Hello Dee - check out my webpage on this website which I have just made. This is my first time corresponding on this site. I am with 2 surgeries 2.4 cm invasivie ductual carcinoma with lumpectomy and lymph node removal. Presently doing chemo, going for radiation soon - left breast so there could be heart and lung complicatins from the treatment. Doing herception in June after last chemo which is tomorrow. Have to do herceptin every 3 weeks for a year then tamoxofen for 5 years. Found it interesting that your CA still survived despite your treatments. How did they find out that your CA had come back? Do you have a webpage on this website? Any advice you can give me re diet and remedial options?, etc. Hang in there everyone.