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All TopicsForum: HER2+ (Positive) Breast Cancer → Topic: DONE WITH HERCEPTIN


Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Feb 12, 2011 05:20PM


Hello ladies just joined today..happy I found this site. I am 37 years old and was dx with breast cancer in Oct. 09. I had 6 rounds of tch followed with a year of herceptin. I just had my last dose of herceptin this past Thursday..can't believe it. Although I am soo happy to be done, I am scared of what will happen without it .What do i do now? I have slowly changed  my eating habits .Does anyone know what I should expect regarding test and follow ups? I know each onc is different  just want to an idea of what will be done. Thanks

Dx 10/2009, IDC, 2cm, Stage IIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+
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Feb 12, 2011 06:49PM Leslie1962 wrote:

KAYCHRIS - I just finished my last Herceptin this past Tuesday. Just like you I posted a new topic that I was done with Herceptin and hoping to get info from others who are also done with it. Only got two replies. Guess we just wait it out and see what happens. Good luck to you!

Dx 9/3/2009, IDC, 3cm, Stage IIIC, Grade 3, 11/18 nodes, ER-/PR-, HER2+
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Feb 12, 2011 09:26PM bikerchick1 wrote:

Kaychris - I was diagnosed nov 2009 and only have 2 more herceptin left. I'm wondering too what's going to happen now? My onc says I should just go off and live my life but that's pretty easy for him to say. He's says I'll see him once a year for the next 5 years and that's it. Lets just hope herceptin has done its job!

Dx 11/9/2009, DCIS, 2cm, Stage II, Grade 3, 0/12 nodes, ER+/PR-, HER2+
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Feb 12, 2011 09:43PM - edited Feb 12, 2011 09:43PM by fightinhrd123

I finished herceptin in dec 09.  I see my onc every four months, and just have routine blood tests.  Its scary thats for sure, and on my mind quite a bit, i take one day at a time, and am finally feeling like i can plan things that are a few months away and i will be there lol. 
Congrats on finishing :)


Dx 5/29/2008, IDC, 2cm, Stage IIB, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Feb 13, 2011 12:28AM flash wrote:

Been there, done that, understand how you all are feeling.  Herceptin is fabulous but it is disconcerting when you finish.  Be assured, you don't even realize it but you will start feeling even better than you do now, in just a few months.  It's easy to say "oh, just go live your life" but unfortunately,while hard to believe,  that really is the truth.  I've been off it now for quite a while. Life really is good, but you need to seize the day and go for it.  Don't look back, no one has a crystal ball.

multifocal multicentric IDC, DCIS, pagets et al. - er+,pr+ her2+++, mast,chemo, ooph, hyst Dx 10/10/2007, Paget's, Grade 3, ER+/PR+, HER2+
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Feb 13, 2011 06:51AM jteach wrote:

Hi Ladies! 

I finished my year of Herceptin in October.  I understand!  Even though I've been busy having gone back to work and having Stages 1 and 2 DIEP done since the end of chemo and rads I've been reluctant to remove my port.  Weird, right?  Like I'm afraid I'll jinx myself or something because "I'm done".

Try to relax and be happy.  I think we're the only ones who can get away with saying that to each other!Wink     Janice 

Dx 4/2009, IDC, Stage IIB, Grade 3, 2/14 nodes
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Feb 13, 2011 09:46AM KAYCHRIS wrote:

SmileWow..thank you so much ladies for sharing your stories with me...glad to know I am not the only one that feels this way. I am excited to know I will be feeling better soon, so tired of feeling tired..lol. I am working on trying not to worry so much and enjoy myself more but I find it so hard to do. Once again thank you for your encouraging words and good luck to all.                                                                                                                                                                                                                                                                                                     Kathy 
Dx 10/2009, IDC, 2cm, Stage IIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+
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Feb 13, 2011 10:38AM REKoz wrote:

CONGRATULATIONS Kaychris! I know the feeling well. Finishing chemo was monumentous and certainly went a long way toward my feeling more human again. But finishing Herceptin was the true END of active treatment. It wasn't really a month or two after that I realized the part that Herceptin played in my energy level as well. So yes, you'll continually feel better over the next few months. I found also that my hair grew in much faster after completing Herceptin.

So good things ahead for you after what I know to be the year from hell. But be aware that it does take time to find a place of comfort in your "new normal". There is a thread regarding the transition from active treatment to discovering what "normal" is to you after having been through all that trauma. It can be confusing and scary not being a full time patient. This, in the psychological sense anyway.

I'm finished 1 1/2 years and see the Onc. and breast surgeon every 6 months. Like all of us first learning of being HER2+, I was scared to death. Even in it's early stage, the aggressiveness of this type of cancer cannot help but leave on fearful. As time has gone on, I'm finding it very interesting that fact no longer heightens the fear in the dwindling worry of reoccurrance. I'm convinced of Herceptin's role in making my diagnosis as good as if I were negative. I don't believe I'm fooling myself, I believe the stats in the success of Herceptin.

You're over the major hump now. If you are anything like me, a year felt like forever and it's very difficult to see the end while going through chemo plus another6-8 months of Herceptin. Celebrate the fact that you got through what seemed undoable. And then be gentle with yourself as you move ahead without any experience on how to do that. You'll still have some pretty rough days emotionally because it can be confusing to see where you've been but not quite sure who you are as you move on.

Keep coming here if you have trouble. Aside from providing a plethora of information, this is the one place you can come to be reassured that you are not alone.

God Bless!

BMX 11/08, Abraxane/Carbo/x4 1/09 Herceptin until 1/10, Recon w expanders-1st exchange Dec. 09. Revision from 700 Style 20 to 600 Style 45-Oct 10 Dx 10/16/2008, IDC, 1cm, Stage IB, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 13, 2011 12:21PM Rubyluby wrote:

Hello ladies, Im another one from the tribe of those who recently finished their Herceptin. I had my last dose just over three weeks ago. I will be interested to see how different I do or dont feel from now on.

For all that having Herceptin is a piece of cake compared to traditional chemo, it is still a cytotoxic drug and it must affect all kinds of things. My hair has grown ridiculously slowly, I have had dizzy spells and I have been unable to shift the chemo chubbiness (25 pounds in my case).

But I am utterly grateful to have had it at all.

Blessings and good wishes to you all for your life from now on...


Dx 1/13/2009, IDC, <1cm, Stage I, Grade 3, 0/5 nodes, ER-/PR-, HER2+
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Feb 13, 2011 06:20PM KAYCHRIS wrote:

@REKoz...thank you..I so enjoyed your words. You made my day when I read about your hair growing faster after herceptin...I know it sounds vain but losing my hair was very difficult for me..I  had long beautiful hair and without it I felt so unattractive..I would only look in the mirror when I had my long wig on...so excited to see how my hair is going to grow in the next few months.@Rubyluby..I to have experience the dizzy spells.thought i was the only one and I gained 20 lbs as well from chemo..now that I have finished herceptin I am hoping it will come off (of course eating right and working out as well). I have read that herceptin contributes to the chubbiness around the stomach area..ughhh but it was all for a good cause..I try to remember that..lol..take care ladies and thank you for sharing.Laughing
Dx 10/2009, IDC, 2cm, Stage IIB, Grade 3, 0/19 nodes, ER-/PR-, HER2+
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Feb 18, 2011 09:20PM elmcity69 wrote:

i just finished my Herceptin year today...my nurses hugged me, the tech cheered, and i kept hearing, "Congratulations!" I kept it together until the parking lot, and then I cried buckets. 

I'm sure it will become the new normal, but now it feels strange and scary. Doesn't help that I bumped into my surgeon last week and he intoned, "oh jeez..you're one of those who should be on it for life."

Well, onward and upward! I am looking forward to better hair growth and losing weight (although the onc doesn't believe H has anything to do with it)

good luck to all you fabulous gals!



Dx 9/24/2009, ILC, 2cm, Stage IIIC, Grade 3, 15/19 nodes, ER+/PR-, HER2+
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Feb 20, 2011 07:10PM amlg1 wrote:

It seems we all had the same thoughts after herceptin.I too was thinking WHAT NOW!.I felt more sad about getting my last tx,than happy.Its been 6 months now and my mind is in a much better place.

Anna.7/22/11 mets to spinal fluid.7/1/2011 now met to brain:( Stage IV Dx 4/22/2009, ILC, 2cm, Stage IIIC, Grade 3, 31/34 nodes, ER-/PR-, HER2+
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Feb 20, 2011 08:43PM AnnaM wrote:

Dear Sisters, I had my last dose of Herceptin in early 2007. I too felt very frightened when my treatments were finished. I am so thankful I was given the opportunity to get Herceptin with early stage BC. I was in that first "generation" that was given the green light after the big study. I still picture the Herceptin as a safety screen in my body. Your mind will get in a better and better place as time goes on. One day you will have to think twice to remember all the details of your diagnosis/surgery/treatment. 

Bilat. MX + DIEP 9/2005, 0/9 nodes and 2/2 nodes; IDC,
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Feb 21, 2011 12:28AM leisaparis wrote:

Hi ladies, I too thought What Now. Well for me, I went on a new trial drug for HER2+ patients. I see some of you here are HER2+. Have you joined the NERATINIB trial. It's a new drug to prolong the time between a recurrence. The new "Herceptin, sorta speak" for Her2+ patients.

I opted to keep my port in for now. Mostly because I've got IBC and there is a chance of recurrence even though I took the year of Herceptin. Since IBC never goes away, we just keep it at bay. Even if I hadn't joined the trial I think I would have kept the port anyway. They just have to flush it like once a month.

 I see RO every 6 months, suppose to see the surgeon every 6 months, but think I will stop seeing him. Wasn't happy with how he left me anyway. See the MO every month ( cuz of the trial ) otherwise I would only be seeing him every 6 months as well.

Glad to know after all this is over that it will get easier.     Leisa

Life is short. Live it one day at a time. Love always, laugh often and smile. God is Good. Leisa Dx 10/7/2009, IBC, Stage IIIB, Grade 3, 2/21 nodes, ER-/PR-, HER2+
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Feb 27, 2011 08:53PM DFW wrote:

I finished Herceptin in December 2005...4 rounds of A/C, 12 weekly Taxol along with Herceptin, then 40 more Herceptin until I had the total  52. (32 rads also)  I am still doing great!

Life without God is like an unsharpened pencil - it has no point.
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Mar 1, 2011 12:42PM mhg wrote:

Hello.out there...hope everyone is doing well . I never thought that I would be part of this discussion group but am here because my sister age 38 was just diagnosed with breast ca[her2+. prog/ est - with axillary lymph node involvement . She had sx [feb 25 ] and is scheduled to see her surgeon/ oncologist  re her pathology report  on mar 14. My sister was in excellent health so it was shocking to hear of this terrible news. We all know that this will be a long process both physically and emtionally draining  once treatment with radiation / chemo starts . My heart goes out to all of you and your family ......you will all be in my prayers .

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Mar 5, 2011 11:55PM BonoboGirrl wrote:

Congratulations my fellow HER2+ sisters on completing Herceptin, or nearing completion. I just finished March 4th. And KayChris, we have the same diagnosis. ;)

Mhg, sorry to hear about your sister. My thoughts and prayers go out to her and your family at this time. And thank you for holding us all in your prayers.  

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Oct 23, 2011 02:05PM christimu wrote:

Hi KayChris;

 I TOTALLY understand about the hair! I also had long hair and that was a terrible part of it for me.  I also couldn't accept short hair -and the painfully slow growth.  I wanted to let you know I opted for getting hair extensions about 2 months ago.  It was the best thing I've ever done for myself!!!  I feel soooo much better!  I was nearing the end of treatment, but I know I would not have felt like it's over, with my hair not looking even close to what I wanted.   Now I can look in the mirror without feeling horrified!  Something to consider for those of you that struggle with the hair issue...........

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