Trying to decide on chemo and herceptin HELP (HER2neu 80%+)

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Pietra
Pietra Member Posts: 5

I'm 53 years old and have been diagnosed with Stge 1B Grade 2 IDC 40% ER+ and 80% HER2neu +. I had a mastectomy 2.5 weeks ago and now need to decide on further treatment. My choices are to do nothing, to just do Tamoxifin for 5 -10 years, or do Chemo with Herception followed by Tamoxifin. Has anyone had similar pathology results and if so, what did you decide for treatment?

4/7/13 *Update - I decided to go with chemo for the HER2 since additional genome tests showed my recurrence rate as HIGH. I just recieved round 1 yesterday and it all went pretty well. T/C/H So far go good but I'm knocking on wood and throwing salt over my shoulder in hopes that it will continue. Killing cancer.......one treatment at a time! Thanks for all your support. I'm sure I have made the right decision.

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  • bdavis
    bdavis Member Posts: 6,201
    edited February 2013

    If you are HER2 + you really need Herceptin. HER2+ is more aggressive. And to get Herceptin, you need chemo as Herceptin is not given alone... And if you are ER+ you need Tamoxifen. So... I agree that you should do the chemo and Herceptin and Tamoxifen. I am not Her2+, but did do chemo and am on Tamoxifen.

  • Pietra
    Pietra Member Posts: 5
    edited February 2013

    Thanks for fast reply.     The HER2 has thrown a huge crimp into my diagnosis and I already figured that it was the main reason chemo/herceptin is recommended.  If only we could predict the future...

    Thanks again!  

  • Jennt28
    Jennt28 Member Posts: 2,021
    edited February 2013

    Before Herceptin came along women with Her2+ cancer were pretty much told that the doctors would give chemo a try but even with it the odds for long survival, or even survival 2 years past diagnosis, was 50/50. Yes, even with chemo!



    Now we have Herceptin and it is usually referred to as a "game changer". Search has shown however that it gives the best result when given with chemo.



    My advice would be to not mess around and to do the chemo and Herceptin. Only thing is that after a whole lot of personal research (and cancer research is what I do for a job) I opted not for the more common Taxotere but asked for Taxol instead as it has different side-effects. Ask your oncologist if you could have a choice and to explain the different side-effects to you (with Taxotere the is a small but very real possibility of your hair never coming back but drs rarely mention that one).



    Good luck and I'm so sorry you have to join us. Pop over to the Triple Positive thread if you haven't already :-)



    Jenn

  • Pietra
    Pietra Member Posts: 5
    edited February 2013

    I got my drain tube removed today.  YEE HA!!    And while at the hospital I cruised by the Oncology Dept and got the ball rolling for Chemo and Herceptin.  I'm scheduled to start on the 6th.  I'm still scared about it all but am psyching myself up by saying, "DIE CANCER CELLS, DIE".      That will get me through it. 

    Your opinions helped me make the decision to go forward.  No looking back now!

    Thanks again for your input!!  I really appreciate it!

  • suemed8749
    suemed8749 Member Posts: 1,151
    edited February 2013

    Pietra - I was dx 2A (no nodes; two tumors: 2.2 cm and 7 mm) and did 6 x Taxol/Carboplatin/Herceptin then finished the year of Herceptin every 3 weeks. Everybody reacts differently, of course, but I did fine - had chemo on Tuesday and was back at work on Monday. Continued to exercise and travel throughout treatment, and although I was feeling the effects of anemia towards the end, my red blood counts built up rapidly after chemo without a transfusion or any drugs. 

    The TCH thread was my favorite hang-out then - great to have women to talk to who are going through the same thing you are. Wishing you all the best - you can do this!

  • weety
    weety Member Posts: 1,163
    edited February 2013

    Yeah, unless your tumor was less than about 5mm, herceptin and chemo are pretty much a given.  Mine was 7mm.  3 years ago, when I was diagnosed, that was considered the "gray area."  Recommendations were changed and Now I think it is a definite yes at that size.  I think "gray area" is now under 5mm and smaller.  You don't have stats on your tumor posted, so I'm not sure if you fall into this size frame or not.

  • Faith316
    Faith316 Member Posts: 2,431
    edited February 2013

    Chemo is nowhere near as awful as you might be imagining it to be.  Don't get me wrong, it is no picnic but it is certainly doable.  I had the idea that I was going to be sick and feel awful all the time while undergoing chemo.  It didn't happen.  I didn't feel too great for 3 or 4 days after each treatment, but never once threw up during all of my treatments.  I felt weak especially around day 5 or so.  Week two of each cycle I felt pretty good most of the time and then week three I felt perfectly fine.  I still went shopping, out to dinner, etc.  I was not bed-ridden and sick the whole time like I thought I would be when I was first told I had to have chemo.

    You'll do fine.  Good luck to you!


  • 46andsingle
    46andsingle Member Posts: 49
    edited February 2013

    Faith316-- I am faced with deciding about chemo right now... how upset I have been.  My doc gives it one drug at a time, 3 drugs today. The first one he said gave you neuropathy and made your hair fall out after 2 weeks. He gives it once a week for 6 to 10 weeks. he says its the worst one. Then the other 2 drugs are given 3x a week for I don't remember how many weeks. The whole event is 6 MONTHS LONG and this is BEFORE surgery. I am seeking a second opinion and in agony. How was your chemo administered?

  • hottie48
    hottie48 Member Posts: 1
    edited March 2013

    Hi,

    I have just registered and would desperately appreciate advice on a decision I am trying to make.

    I am being treated for invasive ducal carcinoma with chemo and herceptin. I have taken four courses of chemo and twelve shots of herceptin.

    I honestly feel my body cannot take anymore chemo! Though from all my research, it seems herceptin is giving me more problems. Skin rash, my skin being flaky and dry. It is also painful to touch. My nails have changed colors looking like fungal infection . I have had three rashes on my thigh, while two have healed the other which is rubbing against my other thing has refused to heal. My last Echocardiography showed that the left systolic function with ejection fraction is 80.7 as against 81% in December before I started chemo. There is also left ventricular diastolic dysfunction grade1. There is trivial aortic regurgitation with peak AR velocity of 88.7 cm/sec. I have constant and persistent headaches, my muscle are week, am not feeding well neither am I sleeping well.

    I feel since I have taken four courses of chemo, I can stop now and continue with a monthly shout of herceptin .

    My Oncologist would prefer I complete a six course of chemo.

    Thank

    Any words of wisdom preferably medical in its content

  • Pietra
    Pietra Member Posts: 5
    edited April 2015

    Hottie48 -

    I have m)y first chemo/herceptin scheduled for this Wednesday (3/6). I'm seeing my oncologist this afternoon and since I've been suffering through a cold the past few days they may end up rescheduling.

    I would say stick with it and finsh the chemo. I understand that it's hard and I myself am not looking forward to it but Irealize that it will increase my chances of kicking cancer out of my body. I had a friend send me a Youtube video of a beautiful young woman going through through chemo. She was dancing and singing to Kelli Clarkson's song, "What doesn't kill you makes your stronger". I will have that going through my head while in chemo. So be strong and you will get through this. Look forward to the end of it and killing cancer!! Take care!! Pietra

  • Kelloggs
    Kelloggs Member Posts: 965
    edited March 2013

    Just wanted to stop by and give a little success story for you ladies just starting.  I am triple positive and was dx'd as stage IV from the beginning with lung mets.  I did TCH X6 and finished 3/22/12.  My scans in 7/12 showed the mets were completely gone!  I have been NED since then.  I am on Herceptin indefinitely and Tamoxifen.  Aside from the hot flashes and some weight gain (no doubt from the chemopause also) I feel great!  My MO refers to my Her2+ stage IV as a "chronic illness".  Good luck, chemo is not fun but it is doable and not nearly as bad as you think it will be.  But even if you are one of the unlucky ones who gets all the SE's I wanted you to know it will be worth it!

  • Kelloggs
    Kelloggs Member Posts: 965
    edited March 2013

    hottie - please don't give up!  I felt the same way after tx# 4, it seems it will never end.  The nail issues and painful skin are probably due to the Taxotere (I assume that is what you are on - TCH).  It can cause nail issues and neuropathy.  These will improve, although the nail issues could take a long time.  I had some rashes off and on during treatment too.  Your EF is awesome!  I have been on Herceptin since I began in December2011 and mine has dropped from around 65 to 55.  They do not consider you for a Herceptin holiday until your EF goes below 50, which is considered normal.  I have an echo every 3 months to monitor.

    I know how hard it is and that you just feel like quitting this chemo now, but if you read my last post above this one, it worked for me and I am so glad I stuck it out.  Sending some strength and hugs your way!

  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited March 2013

    I also wanted to add my encouragement to those of you just starting out.

    I did FEC for three cycles and was supposed to do Taxotere for three cycles, but had very severe se's from it, so only did two.  I completed my twelve months of Herceptin twelve months ago, and I found the Herceptin to be relatively easy.  It's a piece of cake compared to chemo, but I did have a few issues, and those issues were towards the end of the treatment.  Mainly tiredness and diahoera and not extreme.

    My heart function dropped from 65 to 60, it's if it gets under 50 (I think) that they will consider pulling you off Herceptin.

    Twelve months out from Herceptin and I feel great!  Life is pretty much back to normal, with the odd worry now and then when I get a new ache or pain.  There is life after bc, although when you are going through tx it seems like it will never end.

    Sending you all big gentle (((((hugs)))))

    Trish

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