New and Confused - ACTH or TCH, ejection fraction?

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nylady
nylady Member Posts: 11
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello everybody. I am new the forums, so let me introduce myself. I was diagnosed in November with IDC. I have had 2 lumpectomies, but 1 margin is still not clear. I will begin chemotherapy in January and have a mastecomy in the summer. I had 17 out of 38 lymph nodes positive, which is very alarming to me. I am ER+ and HER2+. Now, here is my real dilemma. 

My oncologist initally recommended a treatment of Adriamycin and Cytoxan, followed by Taxol an Herceptin. My muga scan revealed that my Left Ventricular Ejection Fraction is 53%. Because of this, my doctor switched my chemotherapy to Taxotere, Carboplatin, and Hercptin. I read the ACTH vs. TCH posts and I am now even more confused. If the TCH is just as good, why would the doctor recommend ACTH in the first place. I am tending to lean towards the Adriamycin, but I don't know if it is worth the chance if my ejection fraction is only 53%.

 I am not even sure where it is appropriate to post this, but I need help making my decision! What is the consensus between these treatments?

 The good news is that all of my other scans were clear, so besides the lymph nodes there are no metastases. I worry because I had 17 positive lymph nodes, and two lumpectomies were not successful. Now this, and I can't tell if I should get the TCH or if the doctor is just being too cautious! The concern is that if the adriamycin knocks my LVEF even lower, I won't be able to tolerate the Herceptin, which is essential for my survival.

 Please help, I appreciate any comments. Thanks in advance!

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  • my2boys
    my2boys Member Posts: 339
    edited January 2009

    Hello and welcome nylady.  I am also from New York.  When I was first diagnosed, my oncologist recommended ACTH.  I was VERY concerned about the toxic effects of AC on the heart because I wanted to make sure that I would be able to continue with the Herceptin.

    After a second opinion recommended the TCH for me, I did some research on my own and found that it's an east coast vs. west coast thing.  TCH is not as widely tested as ACTH, but has been proven to be about the same as far as effectiveness goes, without the cardiac side effects.  ACTH is rarely used on the west coast, but here on the east coast it is still very widely used.

    My oncologist is with Memorial Sloan Kettering here in New York and he first recommended ACTH for me, but after hearing my concerns about the permanent cardiac damage that can result from this regimen, he agreed to switch to TCH.  I am about 2/3 of the way through my treatments and I am happy with my decision.  If I did not need the Herceptin, I don't know if I would have made the decision I did, but I didn't want my MUGA to fall and eliminate the Herceptin.

    One more thing, I am told that the side effects from TCH are a bit easier to take than the ACTH.  I cannot confirm this other than from my experience with TCH.  The fatigue, bit of anemia and dry mouth are the worst, but other than that I think that I have been pretty lucky so far.  I still have a few treatments left, but I am hoping for the best.

    My advice to you is to go for a few opinions, do some research on your own and once you make a decision, please don't doubt yourself or look back.  It might be helpful to look through the Taxotere, Carboplatin and Herceptin thread in the "Chemo, before during and after" section of this website.  Most of the women there are from the west coast.....like I said earlier it's an east coast vs. west coast thing.

    Good luck to you dear.  This is a tough road we girls are traveling, but please always remember that knowledge is power and you have a wonderful support system here.  God Bless You.

    Anne

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  • lfasano44
    lfasano44 Member Posts: 50
    edited January 2009

    nylady:  I know just how you feel. I had to make the same decision back in Aug and it was the hardest thing.  I chose TCH after research and seeing two onc that both said either would be "fine". I was worried because I had pos nodes but I feel confident that I made the right choice.  I just finished TCH Dec 10 and just had a pet scan that was fine and I am about to start radiation. I would say go with your gut and get a few opinions.  If you go with TCH  the side effects really aren't too bad, it's not great, but it's not terrible.  Good luck with everything, like Anne said, you will find so much help here.  Lauren  

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  • HensonChi
    HensonChi Member Posts: 357
    edited January 2009

    I also opted to go with the TCH.  I did have some side effects but have no regrets.  I am now on just the herceptin alone.

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  • ShayRN
    ShayRN Member Posts: 11
    edited January 2009

    Hi nylady,

    I am on here alot and am a chicken about posting anything, I just read everyone's advice and am strengthened. When you asked about the ACTH vs the TCH I thought I would share my experience. I was asked the same thing when I started in Feb 08. ACTH was the recommended treatment from my Dr. until we visited about family history. I don't have any cardiac problems at all but my family has a strong history of congestive heart failure in later years. My onc said that there is no need to elevate the risk for heart disease by giving the Adriamycin and then the Herceptin because they can both be heart toxic. We decided to go with TCH to reduce future risk of heart disease. He said both tx's are effective and it doesn't really matter which you go with.  I am ER,PR - and Her2+++ , stage 2 with no lymph node involement. One thing I did research was a trial they were doing to determine which chemo combo is more effective on the HER2+++ cancer. They have a topo I or topo II test in the works that will determine which treatment is most effective for which cancer. Results were not ready when I started but may be getting close. Ask your Onc about TOPO testing. With some prayer and research you will make the right choice for you. TCH went well for me. I won't even bother with the side effects and what not because the one thing I have learned is that everyone has a different experience. It was not nearly as bad as I anticipated it to be and now I am 8 months out of chemo and all of the side effects are gone. Thank goodness! Oh, one thing I will mention. My Dr. had planned the ACTH treatments every 2 weeks for 8 treatments. The TCH was every 3 weeks for 6 treatments. The 3 weeks made a big difference. Every 2 weeks would've been difficult for me to imagine because toward the end of the treatments I was just feeling somewhat strong enough after 2 weeks to get things done. I enjoyed having the extra week in there to eat normal and feel well before I started again. Like I said, everyone is different and part of my dilema was having to travel a ways to treatment. 3 week intervals worked best for me. Good luck.

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  • bluedasher
    bluedasher Member Posts: 1,203
    edited January 2009

    There were two things that were very much in favor of choosing TCH treatment IMO.They are both mentioned in the slides that explain the 2nd interim results from the BCIRG 006 study that compared ACT, ACTH and TCH treatment for HER+ patients. The slides can be found at:

    http://www.bcirg.org/NR/rdonlyres/eqkdodg2dy7t557o7s6uvj7ytpe6gcfg5gmh2ely6hnhh5pjlabz3nd6jddlnao7qoikej3edohsijyiisfvp367uuc/BCIRG006+2nd+Interim+Analysis.pdf 

    While both Adriamycin and Herceptin can lower ejection fraction, the effect of Herceptin without Adriamycin is generally temporary - ejection fraction recovers. The effect from Adriamycin appears to be more long term and . See slide 29 which shows ejection fraction starting between 66 and 65%. For those on TCH after 3 years it comes back up to between 64 and 65. For those on AC-TH it is back to around 61% after that time.

    About 2% of the patients in the AC-TH had their LVEF drop so much on Adriamycin that they couldn't get Herceptin.

    That didn't seem worth the statistically insignificant difference (which means that the difference between the two was small enough that it might be due to random variation and if they repeated the trial AC-TH might not come out better than TCH) in the AC-TH  vs TCH results. In the trial AC-TH came out about 1% better than TCH in disease free survival and survival.

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  • ipursuit
    ipursuit Member Posts: 45
    edited February 2009

    Bluedasher thanks for posting that link.  One of two oncos I consulted had sent it to me also. 

    Looking closely at the slides however, it does look like AC=>TH is slightly better than TCH when ignoring the cardiac effects.  I was comforted to find the press release for this study that states that the differences of AC=>TH vs. TCH survival were NOT statistically significant (ie. within the margin of error). 

    Here's the link: http://www.bcirg.org/NR/rdonlyres/eujaag2m247zrmhl6j3vc3ut62jmbh3yizxbi3y47z5lcnf6oxsig6hdhbwrqhezfwrrnwup2xoke3xaynr6ufq3tdh/PressRelease006FDAFinal280508.doc

    Both of the oncos I consulted (both highly regarded here in Atlanta) recommended TCH without reservation. 

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  • nylady
    nylady Member Posts: 11
    edited February 2009

    ipursuit - i'm now two treatments into my TCH and everything is really going very well. The side effects are barely noticeable because I drink lots of water. I recently saw my onc and he told me my tumor markers are down to zero levels, and that i couldn't be better at this point in the game. Have you made a decision regarding which therapy was right for you? What are you considerations etc? Hopefully I can help.

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