chemo regimen for HER2

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pnpmary
pnpmary Member Posts: 14
I met with an oncologist last week for the first time. I'm HER2 Stage IIA post lumpectomy, no nodes. My tumor was 3.5 cm and histologic grade as a III. My tumor was very deep in the breast tissue and I'm 42 years with no family history.
The oncologist stated that even though my staging is IIA he would treat me as if I was a III. His chemo recommendation was dose-density AC X 4 (every 2 weeks) followed by 12 weekly treatments of TH, then Herceptin every 3 weeks for a year. When I asked him about the TCH regimen, he said it wasn't aggressive enough and there were not enough studies to support it's use particularly in my case. He's concerned that even though my sentinal nodes were negative, there may be cancer "deeper". He is only giving me a 60% chance of avoiding recurrence.

Needless to say I was devastated. I do have a second opinion at a major teaching hospital next week.

In some ways I guess more chemo is better, but I'd love to avoid the adriamycin as I already have high blood pressure. He never discussed the TOPOII test though recommmended the BRCA test prior to radiation just in case I wanted to re-think mastecomy and oopherectomy.

Has anyone else had a similar experience? Is he just very conservative? He is the director of a very well-regarded university-affiliated hospital.

Thanks for your input

pnpmary

Comments

  • maryannecb
    maryannecb Member Posts: 1,453
    edited April 2007
    Many opinions out there about what is "the best" , what is the "most aggressive".

    AC,TH then H is commonly used. TCH is out there too. I had FAC, TH + H.

    I think er/pr- tumors are particularly vulnerable to anthracyclines so are usually used in that situation. Are you Er/PR-.

    We all have obsessed about our prognosis, especially in the beginning. Remember that these numbers only give a statistical chance so help you decide how aggressive to be. The numbers can no tell you as an individual your survival. Stage 2 is a curable stage,many women survive this stage and go on to live full productive lives. Why not you?

    Once you have made your decision you will find thing a little easier. Best of luck with your treatment.

    Fists up!
  • Mmisha
    Mmisha Member Posts: 12
    edited April 2007
    Hi PNPMary,

    I was diagnosed with Stage 2B triple positive cancer at age 34. My onc. said that the risk of recurrence was 20% so I am confused about your onc's suggestion that he would consider you a Stage 3 and put you at 40%. Maybe he is conservative. I did dose-dense chemo 4 A/C and 4 Taxol, Herceptin. Now Herceptin for a year. I'd be curious to hear what the second opinion will be.
  • pnpmary
    pnpmary Member Posts: 14
    edited April 2007

    I'm ER/PR negative and HER +2/FISH positive. He also wanted CT scans and bone scans even though I have no symptoms. Once again, he said that the tumor was deep against the chest wall and maybe there are other (inaccessible) lymph nodes which may be positive. My surgeon never said anything about there being a concern. He got the whole tumor our with clear margins on diagnostice lumpectomy.

  • debic
    debic Member Posts: 216
    edited April 2007
    I'm ER/PR+, HER2+ with no nodes, 1.4 cm near chest wall clear margins with lumpectomy stage 1 grade 3. I am doing 4A/C dose-dense and 12 weeks Taxol,Herceptin for a year and Rads. I had CT scan and Bone scan both neg. I felt it was a lot but if it gave me a better chance I would do it, but my onc"s wont give me recurrance chances. I learn more on the post then from the doctors.
    Debi
  • lwy
    lwy Member Posts: 153
    edited April 2007
    pnpmary,
    I'm curious as to where your oncologist got that number? It sounds high to me, perhaps that is your risk of recurrence if all you get is the lumpectomy and nothing else. I would also question his reasoning for calling you stage III when you are clearly stage IIA, like me. As you can see below, my tumor stats are similar to yours and I am also only 30 years old (which is a worse prognosis) and my risk of recurrence after chemo, radiation and tamoxifen is about 20%, but with herceptin, may be 10-12%.
    As far as what chemo regimen works best, it is controversial. studies have been published to show that AC/TH and TCH are statistically the same for disease free survival and mortality rates, but AC/TH has more cardiovascular effects. My oncologist suggested TCH for me because she thinks the most important medication is the herceptin (and tamoxifen for me since I'm ER/PR positive)and she would hate to see my heart function go down to the point where I can't get the herceptin. Also, since I am so young, she wants to avoid any serious cardiovascular side effects that can occur as i get older.My oncologist is also a major breast cancer researcher at a major university/teaching hospital.
    She said you ask 10 oncologist what they think, and 1/2 will say AC/TH because that is what they are familiar with and 1/2 will say TCH. Good luck, but i would definately suggest a second opinion.
    Leslie
  • SheriH
    SheriH Member Posts: 785
    edited April 2007

    I was given the 60% survival number, too. I had a 5 cm tumor, 5 pos nodes, triple positive. I had 4 AC/1 Taxol/3 Taxotere, Only 6 weekly doses of herceptin. I guess what I'm trying to say is, that was 2 years ago. I'm still NED and doing really well. Don't let the numbers freak you out. TX seem to be better all the time. If I had done the complete year of herceptin, my odds would have gone up to 80%.

  • wendyk13
    wendyk13 Member Posts: 1,600
    edited April 2007
    pnpmary...I too wonder how your onc got from Stage II to Stage III? 2nd opinions are good! I am Stage I and am doing TCH as my onc did not want to risk a healthy heart with A plus Herceptin plus he feels that Herceptin is the key to my cure, not the chemo. My first onc said DD AC then T plus H, my 2nd opinion said the same, but TCH was out there, but may not be as good but much safer for the heart. I changed onc's within the first oncology group (didn't like the first one) and he would only consider TCH every 3 weeks, with H sandwiched in each week,then H every 3 weeks for a year. He said he has been too many cardiac problems with A plus H so if he can SAFELY avoid it, he will every time.

    Let us know what you decide on!

    Wendy
  • pnpmary
    pnpmary Member Posts: 14
    edited April 2007

    I had a second conversation with my oncologist to clarify his treatment recommendations. What he continues to focus on is the tumor grade III. While it does not negate the negative lymph node status, the aggressiveness of the tumor outweighs the potential cardiac side effects of the Adriamycin. Had my CT and MUGA yesterday. Everything is clear. Just waiting now on the second opinion on Monday. A nursing colleague of mine questioned that if the second oncologist offered a less aggressive chemo regimen, would I be brave enough to choose it or go with the more aggressive. I'm really not sure at this point because I certainly want this to be the only time I go through chemo!

  • pnpmary
    pnpmary Member Posts: 14
    edited May 2007
    Hi all.
    Had my second opinion today. Definitely liked this oncologist's personality better. She agreed with my first opinion that AC-TH is the route to go. Said there was still not enough long term data re TCH treatment, though in the end it's the Herceptin that really makes the difference with us HER2 girls.
    One thing I'm confused about: the first onco recommended DD AC (q2 weeks X4) then weekly Taxol/Herceptin X12. The second says there's no study out there to say that DD AC-TH is the way to go--all extrapolated from other chemo regimens. She would rather the traditional every 3 week treatment.
    Is there a difference in symptoms between the two. I wasn't thrilled with the idea of weekly treatment but thought I heard it was better tolerated. On the other hand, I got the idea that the second onco's practice site was so busy, they would rather not see me weekly.

    What is everyone else's experience?

    Mary
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007
    I am stage IIIA grade 3 Her2/neu+++...

    I am getting DD A/C X4 every two weeks, then DD Taxol X4 every two weeks. I'll start weekly Herceptin when Taxol starts. Remain weekly on Herceptin all through rads, then go to every 3 weeks.

    Good luck!

    Miss S
  • Annaanne
    Annaanne Member Posts: 190
    edited May 2007
    HI Mary. I really am stage 3A, her 2 pos, hormone neg and I had exactly the regimen your second onc recommended, a/c every 3 weeks, then t/h. (lump, rads, herceptin for one year) I'm two years out and doing very well. In my unscientific opinion, your second onc is also right that herceptin really has made a difference for us her 2 girls. My onc started giving it to node pos (but w/o mets) patients off label six or seven years ago. Not one of those women has recurred!
    I worked during my chemo, which was important to me -- and that was why my onc did the 3 week regimen. She didn't think it would be possible for me to continue working on dense dose. However, I've since read studies that say dense dose has better stats, and so wonder if I shouldn't have done that.
    Good luck. Chemo is no fun, but you'll get through it and you should do really well. I suspect another concern is wanting you to avoid any heart stress (a/c can be hard on the heart) to make sure you can tolerate the full year of herceptin. Ask about that.
    A
  • Mmisha
    Mmisha Member Posts: 12
    edited May 2007
    Annaanne,

    I am so thrilled to hear that none of the Her2 patients at your onc's has recurred. Touch wood!

    pnpmary, did the second oncologist have anything to say about statistics re. risk of recurrence? My onc told me that double dose is typically given to younger women (ie. in their 30's) because their tumors tend to be more aggressive.

    - Misha
  • sns
    sns Member Posts: 60
    edited May 2007

    I'm stage 1, grade 3, HER2+++. For chemo, I did 6FEC instead of AC - seems to be less heart problems with this combo. It's still not used much in this country, but is common in much of the rest of the world. I'm now doing Herceptin every three weeks for a year.

  • cyclepath
    cyclepath Member Posts: 5
    edited May 2007

    Hello! Could you please explain the acronyms in your post? I visit the onco for the first time on Monday -- then on to a second opinion on Friday. It would be useful to understand the treatment you're describing. What has your experience been with these treatments? I have no idea what to expect and have been caught in the whirlwind of rapid-fire information gathering for the past week. Thanks so much!

  • sns
    sns Member Posts: 60
    edited May 2007
    6FEC is six rounds of 5-Fluorouracil, Epirubicin and Cyclophosphamide (often called by it's trade name Cytoxan). Usually is given every three weeks.
    AC is Doxorubicin (usually called by it's trade name Adriamycin) and Cyclophosphamide. It is usually given in 4 rounds either every two or every three weeks.

    I had very few problems with the FEC. Had chemo on Thursday, felt ok Thursday and Friday. My worst days were Saturday and Sunday (kinda like a bad case of the flu without the nausea). I just slept as much as possible those two days and didn't even try to accomplish anything. I started feeling ok on Monday and was pretty much back to feeling (mostly) ok by Tuesday. Main thing was to take the anti-nausea meds whether I thought I needed them or not for the first 4 days and drink as much water (or whatever) as possible. About a week after chemo, mouth sores tried to get established, biotene (over the counter at most pharmacies) took care of that problem. Fatigue does creep up on you over the course of the chemo. Overall though, it's really not that bad - doable is to term you will see often on these boards. The anticipation before starting chemo is actually much worse than the reality of it.

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