TCh vs. ACTh

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Cathy-CA
Cathy-CA Member Posts: 686
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  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    I just found out last week that my Her2/neu status was changed from unspecified to positive.  I'm scheduled to start chemo on 1/21 and was told it would be AC followed by Taxol w/Herceptin.  From some of the research I've been doing, it looks like there is starting to be a preference for TC with Herceptin since it results in fewer heart problems.  I'm going to call the oncologist tomorrow to ask why she's recommending what she is.  In the meantime, I'm curious what chemos others have used or are using.  Thanks!

  • mikeysmom
    mikeysmom Member Posts: 137
    edited January 2008

    Hi Cathy,

    My diagnosis is very similar to yours except that I was highly ER+. My Her2/neu was borderline so they are treating me as if it was positive. I had 4 AC, then 4 taxol. I started herceptin with the taxol and will have it for a year total. My onc said they are moving away from the anthricyclines (sp?) but many doctors are reluctant to eliminate a tx. I had a really strong MUGA so wasn't that concerned about heart problems. For me, I feel more comfortable knowing that I have had all the tx I could. I would hate to have a recurrence and then feel like I could have avoided it if I'd had more tx. But that's a personal decision. AC was bad but so was Taxol--just in a different way. Herceptin is a breeze--just a runny nose for a few days after. I'm on a 3 wk cycle now that chemo has ended.

    If you haven't already, find a group on here that is starting chemo at the same time as you are. The June 2007 group is really what got me through it.

    Good luck to you!!

    Cyndi

  • maryannecb
    maryannecb Member Posts: 1,453
    edited January 2008

    TCH is looking promising. I did mine 2 1/2 years ago did FAC, then Taxotere/H then Hx 1 year.

    Some onc stick with the tried and true regimes, others try what may pan out to be better.

    You do have a voice so talk it over with your team.

    Your sig says DCIS, do you have IDC too?

    Fists up!

  • sista2
    sista2 Member Posts: 53
    edited January 2008

    cathy--i am er- pr+ and her2-borderline.  being treated as positive because some score was over 2.  gonna ask more about that at my onc appt tomorrow.  anyway, i'm getting taxotere, carboplatin and herceptin.  my doc said a year ago i would have been getting act but now tch is the way to go.  i guess i'm glad because the tc side effects are supposed to be easier (???).  getting 6x every 3 wks and then herceptin every 3 wks for the remaining year.  getting to do herceptin from the start is a good thing too i suppose, getting done sooner?  they are splitting the h from the tc, i'm starting the h this thurs and then tc on friday. do you know why your borderline changed to positive?

    cyndi-do you know why your borderline is being treated as positive? 

  • mikeysmom
    mikeysmom Member Posts: 137
    edited January 2008

    sista2--the first test came back positive so they did the Fish test and my score on that was right at the cut-off for positive. So it's being treated as positive just in case. AC was the worst so you are lucky you aren't going through that. I don't know anything about carboplatin. I got my taxol and herceptin on the same day. The first time it took all day but after that it was just most of the day, lol! Herceptin alone is just a 1/2 hour.

    Cyndi

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    Thanks for your responses, everyone.  I am definitely going to call the onc tomorrow to discuss.  I found an article that said anthracyclines are good if you overexpress topo IIa.  For all I know, she had the pathologist do additional testing to see if the tumor is expressing that.

    I had a FISH on the original biopsy that had Her2-.  When the full tumor was biopsied, it changed to unspecified (but I don't have a copy of that report to see the actual number).  When I met with the oncologist last week, she said she had just gotten off the phone with the pathologist and upon further testing, it was reclassified positive.  So, not sure what additional test was run.  I need to get a copy of that report for my files.  I've started a notebook just to keep track of all of this stuff. 

  • sista2
    sista2 Member Posts: 53
    edited January 2008

    i'm just wondering if there are percentages for borderlines that get or don't get herceptin.  like they do for getting or not getting chemo.  of course i want to do everything i can to not get this again but, and especially me being ER-, i suppose it's best to get what treatment you can. 

    i'm thinking of the heart se's mostly.  i read that left side radiation, which i will be getting 5 wks of, can cause heart damage also.  thank goodness i'm not doing ac, that would be three potential heart whammies. plus i don't want that port in me!

    gosh i'm getting whiny the closer all of this is coming. 

  • mikeysmom
    mikeysmom Member Posts: 137
    edited January 2008

    I'm getting left side radiation right now so yes, it is a triple whammy! But like I said, my muga was great and I had an echo after chemo and it was great too. It's so scary before you start but you CAN get through it.

    I had a copy of my path report but I neglected to print a copy out and I can't open the format it was sent in now. I can get it again but at this stage, I don't care so much. I finished chemo in Nov. and will be done with rads on Feb. 6. Like I said earlier, I am the kind that wants all the tx!

    I have a port on the right side of my chest and yes, I hated it but with AC it is a must and now that I've had it for so long, it doesn't bother me too much. Way easier than an IV every time.

    I strongly you to find a group on here that is starting chemo at the same time as you. It will be an invaluable resource and great support. There is nothing like "talking" to someone going through the same thing at the same time. I said that before, didn't I! Chemo brain! See, you get to blame forgetfulness on chemo! There are some good points...

    I think the risk for heart se's with herceptin is actually really low. Probably can find it on here somewhere.

    I got whiny too so don't feel bad--still do sometimes and I still have days when I just feel so sad. But looking back, I am proud of getting through it!

    Cyndi

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Cathy, I had the DD AC T plus Herceptin. I had to stop Herceptin after three months because my LVEF dropped from 67% to 33%. It was most likely caused by a combination of the Adriamycin and the Herceptin.

    I was taken off Herceptin at the end of August and so far there has been no improvement in my LVEF. I am being tested again tomorrow. My cardiologist says it may take a year before I see any improvement.  Using Adriamycin AND Herceptin is not something to enter into lightly.

    May the Lord guide your oncologist as you begin the chemo journey!

    Miss S

  • anneshirley
    anneshirley Member Posts: 1,110
    edited January 2008

    Cathy,

    You might check out the HER2 website which has lots of information on various chemo routines.  I did TCH and before my oncologist even suggested Adriamycin I had already decided against it because of its well documented heart toxicity.  Just recently, at the yearly conference held in Texas (don't remember exact name--San Antonio I believe) there were a number of papers on Adriamycin.  Dr. Slamon, who is one of the researchers responsible for Herceptin, suggests that Adriamycin only works better than other chemos for people who also over express the Topo II and HER2 gene, about 8% of the HER2 population.  Some doctors are taking a wait and see position on Adriamycin, but it's not their hearts.  I also believe that there is evidence that taxol works well for women with HER2+. I really do suggest you check the posts on HER2 regarding chemo treatments: lots of published research there that is very current.  It's doubtful, but not impossible, that your oncologist checked for Topo II.  It's an expensive test so very few doctors do. Good luck whatever your decide. 

    With respect to whether Herceptin is recommended for everyone with amplified HER2, I believe that currently it is.  I was 5mm, Stage 1a, and had herceptin for one year.  I had many of the side effects associated with herceptin, including edema in feet and lower legs, but it was a relatively easy drug to take compared to taxol and carboplatin and it gave me confidence that I would not have a recurrence (knock wood!). Just be sure to have Muga's or echo's every three months even if not suggested by your oncologist! 

  • wendyk13
    wendyk13 Member Posts: 1,600
    edited January 2008

    Hi....I will have my last Herceptin on 1/23 and I did 6 rounds of carbo and taxotere.  At first it was to be AC and Taxol but then my onc went off to San Antonion in Dec '06.  When he came back, we did some research on his own...then changed me to the TC.  Too many heart problems with the A and Herceptin, and leukemias were starting to pop up in his own practice which A can cause.  I was so relieved as I did NOT want heart problems.  All my echos stayed fine and I feel great.  TC really is changing into the gold standard for Her2+ girls.

    Good luck with whatever protocol you begin...it's not fun, but it sure was doable.  Except for the hair loss I had no se's at all, except for the drippy nose thing from  the Herceptin.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    I appreciate all of your input more than I can say.  I have printed out several articles from Dr. Slamon and have a call into the oncologist.  I'll let you know what I find out from her.

  • anneshirley
    anneshirley Member Posts: 1,110
    edited January 2008

    Wendy,

    Laughed when I read the "drippy nose thing."  Isn't it a pain?  And I finished herceptin in August and it's still dripping. I'm beginning to think it may have another cause as well but will give it another month or so--and perhaps invest in company that makes Kleenex.  Please let me know if it stops when you stop herceptin.  Thanks. 

  • sista2
    sista2 Member Posts: 53
    edited January 2008

    cathy - met with my onc today and he has decided to test my tumor before proceeding with treatment.  original testing done on the biopsy sample so maybe i'll get different results as you did.  unless they change my er- status i'd like to stay the same.  i was coming to terms with my tx being easier than ac.  i'm wondering what changed your "unspecified" to positive, maybe i have too many questions!  please post what your onc says about your treatment.  i'm very curious.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    Onc is having me come in tomorrow so we can discuss this in person.  I'll bring in print outs of my research and she can discuss her reasons.  I'll let you gals know what we decide.

  • janet11
    janet11 Member Posts: 262
    edited January 2008

    My onc stays up with the current research (as I hope all of yours do as well), and suggested I go on TCH (I finished it a year ago) because of the heart tox.  Since even just the Herceptin affected my heart, I think that was a very good decision.

    Janet 

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    Met w/onc today and she said the reason she leans towards ACTh is that ACT has a longer, proven history of effectiveness.  However, if I'm more comfortable with TCh, she's fine with switching to that. Given I have as much family history of heart disease as I do of cancer, I opted to switch TCh.

    Echo came back with good, but not outstanding LVEF, so I think it's a good move.  I start Monday, so will see how it all goes.  Thanks for all the advice and sharing your personal experiences.  I really appreciate it.

  • mikeysmom
    mikeysmom Member Posts: 137
    edited January 2008

    Cathy,

    Good luck on Monday! I was so nervous for the first infusion since I didn't know what to expect. I had a friend and my husband with me and we just talked through the whole thing and it was not so bad. I think ativan (anti-anxiety med) is usually given during chemo--I had it but I was getting AC and there are anti-nausea properties to it too. I don't remember if I got it with Taxol. I did get benadryl with the Taxol at first but after the first one, had them cut it down and I don't get it with the herceptin. The first infusion takes a long time.

    My worst side effect with Taxol was achiness all over. I didn't get much neuropathy but do still have a little in my feet (finished on Nov. 15). Get pain meds just in case--there are no prizes for suffering! Also, my onc nurse told me to take B6 to minimize the neuropathy.

    Any other questions, just ask! Someone here will help--this is the best place I found for support.

    Cyndi

  • anneshirley
    anneshirley Member Posts: 1,110
    edited January 2008

    Cathy--I was holding my breath hoping you'd make the decision to skip Adriamycin.  Its proven history is not so proven, particularly if you stack it against current research. And it definitely has a proven record of causing heart problems, and, unlike herceptin, the damage is not believed to be reversible.  Good luck and be sure to follow chemo directions faithfully:  cleaning mouth frequently to avoid mouth sores, taking your B6 and other supplements to avoid neuropathy, taking anti-nausea medication before you need it, etc.  I didn't like much being bald, but I do love my new thicker, curlier hair, so there are even compensations there.  I'm sure you'll do great.  Good luck.

  • DebbieB
    DebbieB Member Posts: 161
    edited January 2008

    Miss Shapen,

    I read your post where your LVEF dropped to 33% and was wondering whether it had gone up when you got tested again.  Are you on Coreg?  My LVEF dropped to 20% and I started on 6.25 mg Coreg and ended up on 80 mg Coreg CR.  I was just tested after 7 months and my LVEF is back up to near 55%.  It was tough going from the lower dose Coreg to the higher dose but my cardiologist says it's responsible for my increased LVEF.

    Debbie

  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited January 2008

    Hi Everyone,  I am interested in knowing how your oncologists feel about TCH vs. ACTH and efficacy against cancer recurrence.  Do  they feel that they are EQUAL in effectiveness but that one (ACTH) is more proven than the other ... or do they feel that  ACTH is a more effective regimen than TCH but more toxic?  I'm new to this board and kind of in information overload.

     Dx 11/12/07 IDC, Stage II, 2.7cm tumor, Gr 3, ER-,PR-,Her2neu +++, N1mic

  • anneshirley
    anneshirley Member Posts: 1,110
    edited January 2008

    Dear Maryanne,

    You should take a look at the HER2 support group site, where there is much information about chemo regimes for HER2+ breast cancers.  I'm hesitant to recommend a particular chemo based on my own views, as I'm not a doctor or involved in oncology, beyond my role as patient.  There's lots of information there and it's very easy to do a search--try "Adriamycin" or "Dr. Slamon," or just read some of the posts.  As you may have gathered from the discussion here, some of us refused Adriamycin because of its toxicity to the heart.  I believe recent research presented this year at San Antonio (see Dr. Slamon) suggests that Adriamycin works better in women who amplify HER2 and have the Topo II marker, and in his research that's about 8% of women with HER2+ BC, a small number.  There is also some information there about the benefits of taxol and taxotere for women who are HER2+.  You might also join the board and ask the same question there that you did here.  It would probably help if you read some of the research there so you can form your own opinion. It's important to trust your doctors, but it helps a lot in creating this trust when you know something about the treatments that are being proposed.  You can tell, of course, from reading the posts here that some of us rejected Adriamycin as a chemo treatment. Best of luck in making your decision.

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    The numbers coming out of the study Dr. Slamon has led indicate about a two percentage point difference in effacacy.  I believe the numbers were 85% disease-free for ACTh and 83% for TCh at the four-year mark.  For me, that was not enough of a difference that I was willing to risk the potential heart problems, given my family history of heart disease. 

    Anneshirley -- I think it's that about 35% of HER2+ also amplify Topo IIa.  With roughly 25% of breast cancer patients being HER2+, 30% of that group gives you a total breast cancer population of ~8%.   When I discussed this topic with the onc, she said this particular number came from a retrospective look at other data and there are studies being designed to specifically look at this issue.  In her opinion it was a bit premature to consider it cast in stone.

  • anneshirley
    anneshirley Member Posts: 1,110
    edited January 2008

    Cathy--thanks for correction on 8%.  If that's how Slamon arrived at that number, it seems to be a bit shifty!  I should mention, however, that it's not just problems with heart that is pushing some oncologists not to recommend Adriamycin.  It's one of the chemo treatments most often associated with later-developing Leukemia. It's difficult for any woman to know what to do, and the new medical guidelines are to give patients the information and let them decide, which is wonderful in some ways, but it does push the decision back on us, and that's not easy.  The most important thing is to do your research, ask your team why a treatment is recommended, that is, what benefits the treatment confers on you in particular, given your medical history and pathology.  And after your treatments are finished, don't look back and question your decisions.  

  • Chelee
    Chelee Member Posts: 513
    edited January 2008

    I think the push to do TCH should seriously be considered.  The great thing is now they have just recently approved the TOPOII test.  You should ask your onc to order it...this would be another tool to see which would work better. 

    Although I would rather go with the TCH as mentioned to not further risk heart damage or ending up with Leukemia.  I know of one women that really believe's she ended up with Leukemia due to her AC treatment.  I don't think it will be long before TCH is the new standard of care.  (But seriously...ask for the topoII test...your insurance company should ok it for you.)  It will make you feel even better about your choice of TCH.  Good luck to you.

    Chelee

  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited January 2008

    Thank you all for responding to my post.  I have looked at the data for the ACTH regimen vs. the TCH regimen and I see that they are very, very close in efficacy (what I have read is that the difference is statistically insignificant).  The only thing is that there are more studies showing the efficacy of ACTH and only one study (BCIRG 006) showing the efficacy of TCH.  I was curious to know how your oncs are interpreting this data.  Are most of them coming to the conclusion that the regimens are equal in efficacy?  Or do they still have reservations?  I thought by  polling everyone, we might get a global perspective on the issue since we can't all visit many oncs.  Also, is it mostly California folks who are using TCH or is it now being offered by oncologists around the country?  P.S.I've heard that UCLA has now eliminated the use of the anthracyline regimen and uses only TCH. 

  • Chelee
    Chelee Member Posts: 513
    edited January 2008

    MaryAnn,  I'm a stage IIIA, Her2/neu, 3+++, with 5 positive nodes and when I was first DX and sent to my onc I knew NOTHING about what chemo's were available.  My onc at that time told me flat out "You will be doing TCH".  He NEVER even mentioned AC.  (That was back on 1-06.) 

    Back then everyone EXCEPT me was getting AC. To this day I don't know WHY my onc never even gave me my options so I could decide which I wanted to go with?  I asked him if I had any say in my treatment and he said "Absolutely NOT".  (Exact words.)

    But that being said...he was REALLY NEW.  He only had a year in onc...I got the newest guy there.  But I believe he was up to date on the newest studies and such.  I am in California and he probably knew all about what Dr. Slamon was doing and the out come of TCH.  I just hit my two year cancerversary and I'm NED. (Knock on wood.) I haven't heard anything about UCLA going with the TCH but that would NOT surprise me.  From what came out at the ASCO this year it would make sense to me.

    Chelee

  • Cathy-CA
    Cathy-CA Member Posts: 686
    edited January 2008

    MaryAnn -- I think all medical treatments are a bit regionalized based on what the big research hospitals in the area are doing.  Dr. Slamon is head of research at the Geffen Cancer Center at UCLA, so it wouldn't surprise me to hear that UCLA is only doing TCH.  I'm in CA and will be doing TCH, but my onc (who did her training at UCLA) originally wanted ACTH because she felt it was more proven.  I was not offered an option when treatment was first presented.  It was only when I did my own research and came back saying I wanted more information on why she wasn't considering TCH that she said if I felt more comfortable with TCH she was fine with that instead.  So, I would say her interpretation of the data is that ACTH is a slightly surer bet, but the data coming out of BCIRG006 is promising enough that she's willing to prescribe TCH. 

  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited January 2008

    Hi Chelee and Cathy, Thanks for your responses.  My understanding is similar to yours about TCH being considered (almost) equally effective to TCH with much less toxicity.  I have seen three oncs - two at university hospitals recommended TCH but would do ACTH if I wanted.  A private practice onc recommended ACTH and had not heard of TCH.  I am hoping others will comment and let us know what they are hearing from their oncs, especially in other parts of the country where the influence of Dr. Slamon and UCLA might not be as strong.  I think learning what oncs across the country are recommending will tell us alot about how much the trend has turned towards TCH.

  • MaryAnn-CA
    MaryAnn-CA Member Posts: 134
    edited January 2008

    Cathy - Hope all went well today and that you are feeling fine.  My thoughts are with you today.

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