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Topic: ER-, PR-, Her2+ Roll call

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Apr 3, 2011 04:17AM

Nevo84 wrote:

Hello everyone

My mom was dx in November 2010. She is in her Chemo courses and only 2 sessions left. She is so well now and is very hopefull.My little niece makes her so happy and she is planning for the ceremony of her first birthday. Since she was dx I've explored in this site in different cathegories but sisters with this signature are few. So I decide to start a new thread in which we can call all   ER,PR-, HER+ gals and specially who survived for years. I hope we can make a group like triple positives and etc.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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Apr 5, 2011 01:08PM marjie wrote:

Hello all - so glad to have found this thread!!

I finished chemo Feb 2 (FEC-D) and am just finishing the last 8 sessions of rads.  I have Herceptin until December if all goes as scheduled.

thegood5 - I am really hoping I don't gain weight, I am still within about 5lbs of where I started but I'm nervous about it, for sure. 

Treatment: Rt Lump/SNB Aug 2010, FECx3/Tx3, radsx25+8, Herceptin x18 Dx 7/13/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Apr 5, 2011 03:13PM anonymice wrote:

Holly, I'm so glad to hear that you had success with Adriamycin as well, and very encouraged to know that the Taxol and Herceptin could show you those same visible results (although obviously I wish the tumor hadn't been big enough to see during that time!)  I don't actually even know how large my IDC tumor is/was; I find myself returning to pathology reports now that I have a better understanding of stuff from BCO mostly!

I did try to chime in on that thread but it looks like it has been removed.  I often get upset when I hear people not only declaring they won't have any conventional treatment, but when they try to take others down that path it's downright dangerous.  No one *wants* chemo, radiation, or surgery.  They aren't perfect but with a BC survival rate approaching 90% while in the same time a HUGE number of women being diagnosed with BC....something is working.  

It seems like you can see on the posts - some women have been seeking homeopathic meds and that is truly what they believe in and how they will address this new health issue...but then you see the folks that are clearly just terrified of what they think treatments will be...some of them with extremely aggressive cancers.  But, we can only do what we can do in terms of sharing our experiences, and letting them know that you can live life well during treatment. 

Dx 9/22/2010, IBC, ER-/PR-, HER2+
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Apr 5, 2011 03:30PM ma111 wrote:

I am trying to get off steroids to get in a DMD1 with vaccine trail. They told ne no. My onc said it was because I am on steroids. The chemo damaged my adrenal glads and my BP bottoms out. Steroids brings up the BP. I had a weak pulse and could just not function at all. I hope the rest of the tapering off of steroids goes well so I can do the vaccine trail. I think it has more potential than chemo.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Apr 5, 2011 04:15PM Faith316 wrote:

Unfortunately, there are no absolutes in cancer treatments.  I'm so glad that many of you had great results with AC and Herceptin.  I did not.  AC, nor Taxol, nor Herceptin helped my cancer at all,  I had progression in the midst of all those chemos and while I was undergoing radiation.  But, fortunately, the Xeloda and Tykerb that I was switched to did work for me.  Thankfully there are lots of options and more coming out all the time.

DX 4/08 IDC, ER-, PR-, HER2+, IIB, Grade 3,lumpectomy,2/8 nodes,4 AC,12 wks.Taxol,Herceptin,30 rads. DX IBC 6/09 while still in treatment. Now Stage III. 6 mo. of Xeloda done, still on Tykerb. Uni-mx & another node dissection 2/4/10.
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Apr 5, 2011 04:16PM HollyinMich wrote:

Ma111 - You have definitely been having a rough go.  Sending you lots of cyber hugs and really hoping that you'll be able to get into that trial!!

PaminWV - I agree totally with you!  That's why I started the thread. It's still there, I probably just suck at posting the link, lol.  It's under Chemotherapy - Before, During and After Treatment and probably a bit down on the page.  Don't get me wrong I don't see a problem with combining a natural approach along with conventional medicine, do what makes you feel good about yourself, but ignoring actual medicine all together is very dangerous indeed.  I definitely come from the idea that traditional medicine is best, my husband is a nurse and I was working on my pre-reqs to go into nursing myself at the time of my dx, but I am also aware that someone's personal beliefs in what will help them succeed through treatment plays a huge role too.  I think everyone adjusts their eating habits after a cancer diagnosis, but again throwing yourself into a full vegan diet when you've eaten meat your whole life isn't smart either.  And the idea that fasting or only eating certain foods will cure you is ridiculous. 

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman! Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Apr 5, 2011 04:18PM HollyinMich wrote:

Faith316 - You are absolutely right, what works for some does not work for all.  I'm glad to hear that you were able to find a combination that did work for you!

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman! Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Apr 5, 2011 06:02PM anonymice wrote:

Someday hopefully soon, they will find out what makes Faith's cancer different than say mine despite similar stats to our current knowledge, anyway.  Then they'll be able to do THAT test and start Faith out on Xeloda and Tykerb, and me on A/C.  I don't think that day is too far off, but for now we all need to stay on top of what works for similar stats, and if that doesn't, what else does.  I really appreciate having this thread and all the "check-ins" from my similar sisters.

Dx 9/22/2010, IBC, ER-/PR-, HER2+
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Apr 5, 2011 09:27PM dottie70 wrote:

SmileThe 31th of March I reached the big 5 year mark CANCER FREE. Diagnosed March 2006 with IDC ER-,PR-, Her2+ with two nodes involved. Double masectomy with reconstruction. Four rounds A/C, twelve rounds Taxol and one year Herception. Have gained some weight from size 6 to now a 10. Feel great and thankful for each day--there is hope and I am living proof!
dottiebob70
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Apr 5, 2011 10:03PM Lilah wrote:

Dottie -- WTG on 5 years NED!  I'm sure that must feel GREAT and I look forward to joining you :)  I guess if you count from Diagnosis I am almost at 2 years NED (was originally diagnosed with DCIS the first week of May 2009 -- then had lumpectomy and news it was IDC in June 2009, so that's why I have June as my date of diagnosis). 

Did you have radiation? 

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 6, 2011 04:57AM Nevo84 wrote:

Dear dottie you are such an inspiration for all of us. big HUGs to you.I hope we are all together celebrate your 30 years NED.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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Apr 6, 2011 04:59AM Nevo84 wrote:

Hope that other ladies who survived for years will come in this thread and give us hope. Everyone of them will give us strenght and hope to continue this journey

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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Apr 6, 2011 11:13AM Sassa wrote:

I am four years out from chemo (4 AC), 3 years out from end of herceptin. I am NED and feel better than I ever have in years.

About weight gain and chemo/herceptin:  I can personally testify that weight gain is not a given - I am 95 lbs lighter than when I was diagnosed in November 2006.  As I also when through menopause during this time period, another favorite "blame" is also shot down.

What I have seen repeatedly on these boards is that people going through chemo often feel that they deserve to "treat" themselves (and we do deserve to treat ourselves).  However when the treats are daily doses of comfort food like mashed potatoes, mac and cheese or hot fudge sundaes, of course weight gain is going to happen. 

Many of us also stop exercising.  Yes, we do feel like s@#t.  However, even a half hour walk at a crawl will help.  Starting and keeping up a daily exercise regimen is necessary. Also , you must watch what you are putting in your mouth. 

When I was first diagnosed and going through treatment, the study results of the effects of exercise and body weight on BC recurrence rates were just being released.  While the most benefit was found for ER/PR + BC patients, reduction was also shown for ER/PR - BC.  That certainly gave me added incentive to exercise and lose weight.

 So, weight gain is not a given; you just have to take control and not blame the chemo, herceptin or menopause.

Dx 11/6/2006, IDC, 1cm, Stage IA, Grade 3, 0/9 nodes, ER-/PR-, HER2+
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Apr 6, 2011 12:05PM dottie70 wrote:

No I didn't have radiation---my doctor said if more than two nodes were positive I would have to have it. I consider myself blessed because it was in 2006, the year I was diagnosed, that Herceptin was used in early stage cancer, mine being stage 2B.
dottiebob70
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Apr 6, 2011 01:01PM dottie70 wrote:

SmileNevo84, it does my heart good to know that I have been an inspiration to someone that has gone through with what I did.  A friend of mine was diagnosed twenty years ago, had chem and radiation both. Five years later she went through the same thing and at that time all we knew was that it was very aggressive. At age  fifty-one she went back to school and today is  a LPN doing great---she has been my inspiration.

Five years ago I searched for success stories on BC and refused to read anything negative. Today I am more than happy to share my story with the ladies that are doing just what I did---search for hope. God bless all of you and stay positive! 

dottiebob70
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Apr 6, 2011 04:07PM anonymice wrote:

So wonderful to see you here Dottie, thank you for checking in!

Dx 9/22/2010, IBC, ER-/PR-, HER2+
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Apr 6, 2011 04:14PM anonymice wrote:

Sassa, you are right about so much of the weight gain.  Obviously, some folks do end up with significant neurological, cardiac  or other issues from treatments, and other have psychological issues with bc that are very difficult to overcome when it comes to weight gain - it's not easy for anyone, and throw cancer in to the mix and it can be insurmountable.  

But it's so awesome you've managed to take of 95 lbs, what an accomplishment for anyone, let alone a bc survivor!  Congratulations!! 

Dx 9/22/2010, IBC, ER-/PR-, HER2+
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Apr 6, 2011 04:49PM marjie wrote:

Hi everyone - so did anyone find that they eventually needed to get medication for the joint aches & pains from the herceptin?  I was in for my tx today and just mentioned it to the nurse and she was alarmed that I didn't have anything to take for it.  IMO if it's too bad, I take tylenol - I just feel like I have been so pumped full of drugs I'd like to avoid any more if I can.  Just looking for some thoughts - I still have several more herceptin tx's to go.

Pam & Sassa - you are so right about the weight gain. This whole process is such a mental game for us.  I remember when I was first diagnosed I was told that there was no such thing as a "skinny" BC patient and that I should expect to gain at least 30lbs.  Well, it hasn't happened so far and I remember being really upset and worrying about weight gain on top of everything else!  I think we all react differently to all the drugs and stress. Kudos to everyone for getting through it - big or small!

Treatment: Rt Lump/SNB Aug 2010, FECx3/Tx3, radsx25+8, Herceptin x18 Dx 7/13/2010, IDC, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Apr 6, 2011 05:08PM HollyinMich wrote:

I didn't gain weight at all on A/C, but I did gain weight on the Taxol thanks to the Decadron and I actually ate less during my Taxol treatment and was more active.  It really depends on your treatment plan.  My body did not handle the steroids well.  I had full blown pseudo cushings from it, moon face and all. :(  Overall, though, my weight gain was only about 10 pounds.  So while I would agree that there is a mental element to it for some, drugs do play a roll as well.

Marjie - You know I did actually go see my med onco this week because I just began having really horrible joint pains.  I don't think it's Herceptin related though because it seems to be timed with changes in the weather as opposed to my treatments.  I ended up speaking to the PA (who is also a BC survivor) and she said that it was most likely from the Taxol.  Taxanes, apparently, can cause lasting SEs for up to a year after you stop treatment.  She gave me a script for Tylenol 3 that I haven't bothered to fill yet.  I don't expect it will do much since Aleve, Motrin, Tylenol or Vicodin didn't touch it.  I'm just thankful that it's not a constant thing.

Dottie - Thank you for sharing your wonderful story!!  It definitely helps to give comfort and hope that this thing can be beat!

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman! Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+
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Apr 6, 2011 05:32PM dottie70 wrote:

Speaking of weight gain, I actually lost weight during my treatment and became very frail, but putting  it back on wasn't caused by any medication---I just like to eatLaughing

dottiebob70
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Apr 6, 2011 06:44PM Leslie1962 wrote:

Count me in on this thread too. Dx in Sept 2009 just finished the last of my treatments in February 2011. So far all is well. I concur with the weight gain on herceptin.

Dx 9/3/2009, IDC, 3cm, Stage IIIC, Grade 3, 11/18 nodes, ER-/PR-, HER2+
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Apr 6, 2011 07:35PM Lilah wrote:

Marjie -- about 2 months after I finished H I noticed a marked improvement in the joint aches.  I did develop some arthritis in one knee (who knows if it's related or not) for which I take Glucosamine and Chondroitin (which works wonders)... the rest of the issues are gone.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 7, 2011 10:11AM Jaimieh wrote:

I am another who lost and looked frail during treatment and now I just keep gaining :(.  I am now 5lbs over where I started and I am 7lbs up past when I was diagnosed. 

Dx 12/24/2008, IDC, 1cm, Stage IA, Grade 3, 0/2 nodes, ER-/PR-, HER2+ Dx 3/25/2014, IDC, Stage I, Grade 3, ER-/PR-, HER2+
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Apr 9, 2011 08:14PM mtndawn wrote:

I lost weight during tx, too.  Now, my diet is very plant-based, so it's hard to put on any.  Being almost vegan is one way to take off the pounds, if anyone wants to try it.  :-)  I am not allowed to exercise right now due to ejection fraction issues.  Hoping to be given the green light in May.    

Congrats, Dottie!  We love to hear stories like yours.   

I will be deported on Wednesday, 2 days shy of my cancerversary!  One more chapter closed, yay!

HollyInMich, I posted to your thread in chemo, but other than that, no one has chimed in. 

Dawn TCH x 6 - done!, H one year - done!, first tx 4/19/2010, bmx w/ immed. TEs 9/16/2010 - done, PCR! 28 Rads 11/2/2010 - 12/15/2010 - done! exch 1/11/2011 - done! Dx 4/15/2010, IDC, 5cm, Stage IIIA, ER-/PR-, HER2+
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Apr 10, 2011 12:29AM Slainte wrote:

I am Er- and pr very weakly positive 4/8 so the Onc considers me hormone negative. I am her2+++. Had left mastectomy in sept followed by FEC-D chemo ( six rounds in total). Herceptin to finish in Nov. I also have gained weight ( cant seem to get rid of last 8 lbs) and significant joint pain :((. On the upside, my hair is coming back. I'm half way to a pixie cut :))

Dx 8/17/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER-/PR-, HER2+
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Apr 10, 2011 08:06AM redwolf8812 wrote:

Diagnosed July 2010 IDC multi focal rumors in left breast, enlarged lymph nodes in axillary, pet scan showed some uptake in an internal mammary node. Started TH August 2010. Developed blotchy rash on breast @October which turned out to be skin mets - residual so onc not sure if it was always there or was progression. Epirubicin and cytoxan cleared it. BMX January 12, 2011 - excellent path report - tumors gone, residual in lymphovascular and 2 axillary nodes, all clear margins. No reconstruction. Rads finished 3/29/2011. God is good! Now on herceptin and tykerb.

...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9) Dx 7/2010, IDC, 6cm+, Stage IIIA, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2010, IDC, 6cm+, Stage IIIC, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2011, IDC, 6cm+, Stage IV, Grade 3, 2/9 nodes, mets, ER-/PR-, HER2+ Chemotherapy 4/1/2014 Gemzar (gemcitabine) Targeted Therapy 8/20/2014 Herceptin (trastuzumab)
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Apr 10, 2011 08:56AM dottie70 wrote:

My theme song when I was diagnosed and still is "Because HE lives I can face tomorrow, all fear is gone". Isn't that a blessing to know that!
dottiebob70
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Apr 10, 2011 10:06AM - edited Apr 10, 2011 10:07AM by redwolf8812

This Post was deleted by redwolf8812.
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9) Dx 7/2010, IDC, 6cm+, Stage IIIA, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2010, IDC, 6cm+, Stage IIIC, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2011, IDC, 6cm+, Stage IV, Grade 3, 2/9 nodes, mets, ER-/PR-, HER2+ Chemotherapy 4/1/2014 Gemzar (gemcitabine) Targeted Therapy 8/20/2014 Herceptin (trastuzumab)
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Apr 10, 2011 10:10AM redwolf8812 wrote:

Dottie - Amen!

Forgot to mention that I tested positive for BRCA2 so I had a hysterectomy/ooph also on January 12th. Mom had ovarian cancer. Sister (also BRCA2 positive) had DCIS @ 2 years ago (hormone positive, her2 negative). Just a bunch of gene mutants. :)

...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9) Dx 7/2010, IDC, 6cm+, Stage IIIA, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2010, IDC, 6cm+, Stage IIIC, Grade 3, 2/9 nodes, ER-/PR-, HER2+ Dx 11/2011, IDC, 6cm+, Stage IV, Grade 3, 2/9 nodes, mets, ER-/PR-, HER2+ Chemotherapy 4/1/2014 Gemzar (gemcitabine) Targeted Therapy 8/20/2014 Herceptin (trastuzumab)
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Apr 10, 2011 04:30PM Annaanne wrote:

Hi all.  I'm just arrived at 6 years since dx.  Stage 3a.  Doing well.

Best to everyone

Annaanne 

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Apr 10, 2011 04:33PM HollyinMich wrote:

Mtndawn - Thanks for your post!!  I think maybe I'll bump it.  I'm hoping more ladies will write their stories.  With all the threads dedicated to the SEs some positive outcome stories will help those newly diagnosed find some hope in all of this.  It can all be so overwhelming and knowing that there is a light at the end of the tunnel makes it so much more bearable!

DX w/Brain Mets on 8/30/11. If God only gives you what you can handle then he must think I am Superwoman! Dx 8/12/2010, IBC, 4cm, Stage IV, Grade 3, 0/8 nodes, mets, ER-/PR-, HER2+

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