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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 02:17AM

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 20, 2011 07:09PM Lilah wrote:

Stl -- wahoo!!!  So glad you passed :) 

Holly -- sorry you have to stop but you want to take care of your heart!  You might want to ask your doctor about Tykerb, which I think is another drug they use to treat HER2+ women that does not have the same heart issues (though I could be wrong).   I think it's in trials still but maybe since you had this issue you can get in on it?

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 20, 2011 07:37PM CarylC wrote:

Lilah - I had a bi-lat mx as well, am doing TCH and will then do rads also.  My BS surgeon had said I'd get chemo only but both oncs I saw said rads because of the size of the tumor, 3.5cm, the 3 nodes involved, the HER status and the fact that I had extracapsular extension on one node.  I thought my margins were okay but I do know that on the right side she did a modified radical so she might have had to get pretty close to the chest wall.  

I didn't want it but the onc said "we have once chance to cure this, after that we're just treating so let's do everything we can."  I couldn't really argue with that.   

Dx 3/11/2011, IDC, 3cm, Stage IIB, Grade 2, 3/12 nodes, ER-/PR-, HER2+
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Apr 20, 2011 07:46PM suemed8749 wrote:

StLouisCardsFan: Wooohoo! Happy dance for you! Testing for the possibility of mets is so amazingly stressful even when there's no symptoms - I can only imagine how light you feel right now. YAY!

Dx 1/15/2008, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Apr 20, 2011 07:57PM - edited Apr 20, 2011 07:58PM by Lilah

Caryl -- understandable and makes sense.  I directed my question to Aussie Sharon specifically because she had only 1 node (like me)... and I've wondered whether I should have done radiation (though I'm glad I did not have to).  All of my doctors said not to... I think what I've worked out is that some women with only 1 node do have the radiation anyway (even with MX) because of size of tumor or location (close to chest).  And I'm sorry you (or anyone) has to have it with an MX... but definitely it's worth doing if there are good reasons to do so (like yours).

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 20, 2011 09:02PM marjie wrote:

CarylC -   I had rads (just finished this past Friday actually).  Had lumpectomy but even if I chose mx, I would have still had to have rads because of the size and pathology of the tumour.  Not sure how you are making out with chemo, but I found radiation to be sooo easy in comparison!
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 21, 2011 07:31AM KitCat1 wrote:

Hi Carly,

I also had rads with only one lymph node invloved. The node had extracapsular extension as well. The head of radiation said it is optional, but I chose it. He said if it was his wife he'd say go with the rads. Give it all!! I always like to ask that question now to docs. If it were your wife, daughter etc, what would you suggest???? I also had modified right mastectomy. Finished TCH last Sepetember. Finished rads in November and two more Herceptons to go! All the best to everyone here! What a road! I  just had my one year anniversary yesterday!! It was emotional.Lets'keep theese postive stories going ladies! We need to hear more!!

Cathy xx

Dx 4/20/2010, IDC, 3cm, Stage IIB, Grade 2, 1/16 nodes, ER-/PR-, HER2+
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Apr 21, 2011 10:18AM stlcardsfan wrote:

Huh, no rads for me.  I did opt for BMX, and was a chemo first girl. At time of surgery nothing was left (no cancer) The two nodes that came out were pulled before TCH and at time of port placement.

Given my nodes, chemo results and surgery type - no rads for me. All three departments got together and didn't see any benefit in giving me rads.

TCH, Herceptin, BMX, Exchange all Done! Dx 12/4/2009, IDC, Left, 4cm, Stage IIA, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Apr 21, 2011 02:11PM HollyinMich wrote:

Lilah - My med onco actually did mention that Tykerb was a possibility.  I was looking at the side effects of it yesterday and it can still affect your heart, but I think that it does so a bit less than Herceptin.  I'll be honest though after reading what I did about Tykerb, I'd rather stick with Herceptin if I can.  With Tykerb you also have a possibility of liver toxicity and in addition to the heart monitoring they also have to monitor your ALTs to keep an eye on your liver.  And the number one side effect of Tykerb is severe diarrhea.  Yuck!  The ONLY issue I've had so far with  Herceptin has been my heart; so I'm really hoping that things will bounce back rather quickly.

As far as rads go, I am currently doing radiation myself.  Today was 19/33.  I was dx with IBC so we're throwing everything at it and so far so good!!

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 22, 2011 02:03AM ma111 wrote:

I haven't posted for a while,sorry about that. Been busy getting all my medical records to the National Institute of Health to start the trail on May 1st, yea!!!!!!!!!!!! I am off steroids, on effoxor for neuropathy and to increase my blood pressure. It's working and I will be getting the vaccine. Because the cancer is resistance to chemo, there is more potiental with the vaccine.

I found the clinical trail at clinicaltrails.gov. Most of the trails are free and the help with transportation and hotel fees. Do check them out! I am much more hopeful for some functional life.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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Apr 22, 2011 07:21AM Nevo84 wrote:

Dear Stl

 So happy to hear your good news. keep on dancing with ned.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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Apr 22, 2011 07:21AM Lilah wrote:

HollyinMich -- that makes sense.  I actually decided not to do a neratinib trial for the same reason (the liver issues) -- I think maybe neratanib IS a form of Tykerb?  Anyway, here's hoping that the rest does your body and heart some good and that you are able to return to the Herceptin in time.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 22, 2011 04:41PM HollyinMich wrote:

Thanks Lilah!!

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 22, 2011 05:31PM DFW wrote:

I was dx 4/2004 ..her2/3+++  I had bilateral mast, 5/15 + nodes, A/C, Taxol, Herceptin and 32 rads. Still here and doing well.

Life without God is like an unsharpened pencil - it has no point.
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Apr 22, 2011 06:08PM KitCat1 wrote:

DFW... That is such wonderful news! I so much needed to hear that ! Thank-you for posting! So glad you are doing well!

Hugs Cathy xo

Dx 4/20/2010, IDC, 3cm, Stage IIB, Grade 2, 1/16 nodes, ER-/PR-, HER2+
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Apr 23, 2011 11:09PM Nevo84 wrote:

Dear DFW

Thank you so much for your encouraging story. you are such a huge inspiration for all of us. Hope you will celebrate you're 30 years of dancing with NED. big HUGS to you. come on ladies we need more stories.

Dx 11/3/2010, IDC, 6cm+, Stage IIIA, Grade 3, 8/35 nodes, ER-/PR-, HER2+
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Apr 25, 2011 07:28PM lizely wrote:

This is my first reply as I am new to this group, but definitely a member of the club!  I have stage T1b and want to know if anyone has decided to forgo TX and if so, why.  Herceptin + THC will only increase my survival rate 2% and my surgeon says they can control mets well today.

 DCIS + lumpectomies 2007, 2009; Mast. 4/11 er- pr- HER2+++

Lizely
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Apr 25, 2011 10:15PM Lilah wrote:

Lizely -- you had me until your "surgeon says they can control mets well today" ... yikes!  I'm not sure I'd choose that if I had another choice.  Why does Herceptin + THC only increase your survival rate by 2%?  Will you also be having rads?  Have you discussed this with an Oncologist (as opposed to a surgeon)?  If not, get thee to an Oncologist for a second opinion.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 26, 2011 10:17AM lizely wrote:

Going to onc #1 today.  Getting lots of opinions.

My surgeon's point was that I should really understand the risks of chemo and evaluate whether for 2% increase in survival (this would be after two years of cancer-free, no recurrence) it was really worth it.   She said chmo increasesyour chance of getting leukemia.  Plus I have always had low WBC which increases chance of infection.

 I just want to know if anyone opted out of chemo and why they did so.

Trying to collect all the info one way or another.

Lizely
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Apr 26, 2011 07:28PM Lilah wrote:

Lizely -- it's my understanding that if you are HER2+ and take Herceptin, your chances of preventing reoccurrence is MUCH higher than 2% so I just don't understand why your surgeon thinks its only a 2% improvement for you; not saying he is wrong, since I don't know the details of your specific pathology, but HER2 positive cancer is an aggressive cancer that is highly recurrent without Herceptin; with Herceptin the chances for recurrence are greatly reduced. 

ARE you HER2+? 

Your chance of getting Leukemia from chemo (which you DO need in conjunction with Herceptin as the studies show Herceptin works better in concert with the chemo) is less than 1%.  There have been recent studies that have found Herceptin plus Taxotere and Carboplatin (but NOT Adriamiacin) may be just as effective as ACTH but less toxic.  There are various chemo options that you can discuss with the Onc.

Re: low WBC... they give you Neulasta when you undergo chemo to help boost your WBC.  This is really something one should discuss with an oncologist, not a surgeon, with all due respect to your surgeon.  Glad you will be seeing an oncologist!

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 27, 2011 10:58AM lizely wrote:

Met with my ONC yesterday and he wants me to do taxotere, carboplatin and herceptin.  Yes, I have read all the articles on herceptin (which I don''t mind taking and I know does a good job).  My issues are only about the other two drugs.  Wish I didn't have to take them.  Can't have rads because of my mastectomy and they never were an option.

My ONC gave me his opinion of the online Adjuvant Chemotherapy which my surgeon used.  The adjuvant chemotherapy program does not take into account (as I had suspected) the HER2+++.

I have been leaning towards the onc's treatment all along anyway.  Just wanted to know if anyone else had opted not to do it.

 

Lizely
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Apr 27, 2011 11:13AM marjie wrote:

Lizely - Weighing it all out, usually the benefits outweigh the risks for most of us.  I remember my onc telling me that I was going to have to get sick in order to get better, but that I WOULD get better.
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 27, 2011 03:44PM Lilah wrote:

Sorry Lizely -- god knows I know how you feel.  I was told initially (before they knew I had HER2+) that I would not have to have chemo; I was devastated when I found out that I did.  I will say though that with the ancillary drugs they give the SEs are minimized; all in all it wasn't anywhere near as horrible as I thought it would be.  Yes I lost my hair but hair grows back (and has).  I feel protected by the treatment I got - here's hoping I am!  I definitely would be a basket case of worry had I NOT undergone the chemo.

Dx 6/2/2009, IDC, Stage IIA, Grade 3, 1/17 nodes, ER-/PR-, HER2+
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Apr 28, 2011 12:52PM katka wrote:

Hi Im new in group, diagnosed 3month after I gave birth to my 3th child, during breastfeeding I was 35. Finished 8cycles of chemo, after mastectomy. Radiation ahead in 2 weeks. In histology nodes were negative but Im affraid only due my 8cycles chemo, but hoping it could be. On Herceptin weekly for now since November.

Dx 9/20/2010, IDC, 6cm+, Stage IIIA, Grade 3, 0/13 nodes, ER-/PR-, HER2+
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Apr 28, 2011 01:01PM mom2one wrote:

Please help with treatment options.  Do any of you know what is recommended for HER2+ cancer that is DCIS with microinvasions.  My 2 microinvasions were less than one mm combined.  I was told that my BMX got all the cancer that was on the left and that no cancer was found on the right.  My DCIS was 6+ cm.  Duke University Hospital recommends no further treatment.  They said even though I am grade 3/HER2+ it was caught so early that chemo/herceptin would not help.  Anybody have any experience with this and if so what treatment did you have?

Dx 12/30/2010, DCIS, 6cm+, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Apr 28, 2011 01:45PM sewingnut wrote:

mom2one,

Was your DCIS 6cm or 6mm? I would question something that large ( if it was 6cm) with no further treatment. HER2+ is aggressive. I would throw everything I had at it..... Just sayin'....

Dx 12/2010, IDC, 5cm, Stage IIIA, Grade 3, 1/7 nodes, ER-/PR-, HER2+
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Apr 28, 2011 02:29PM mom2one wrote:

sewingnut:  My DCIS was 6+cm.  Thanks for your input.

Dx 12/30/2010, DCIS, 6cm+, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Apr 28, 2011 02:50PM thegood5 wrote:

katka, welcome...sorry to meet under these circumstances.  Wanted to let you know that there is a great thread on here called April 2011 rads...it's many who have started rads in April or even March...gives lots of good advice.  You should check it out, I see you are starting in 2 weeks.  Good luck to you!

thegood5 Dx 9/16/2010, IDC, 5cm, Stage IV, Grade 3, 0/5 nodes, mets, ER-/PR-, HER2+
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Apr 28, 2011 07:22PM suemed8749 wrote:

lizely: I did Taxol/Carboplatin/Herceptin x 6 in 2008 - I was, of course, terrified at the thought of doing chemo, and I was surprised to discover how "doable" it all was. One "off" week after chemo, then felt almost normal the next week, then one normal week. I was anemic towards the end, so was exhausted at times, but when I was done, my counts quickly returned to normal.

And 3 years later - doing well! At age 57, I take Body Pump 2x a week (started a year ago because I was so weak after recon), hike and walk, work full time, and feel great.

I wish you all the best! Sue

Dx 1/15/2008, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2+
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Apr 29, 2011 02:58AM ma111 wrote:

Lizely,

I am alive and functioning 1 1/2 years out of TCH + Herceptin. My WBC's went down to 1.9 and Neulasta worked for me and took it back up. It took until last month for me to progress. My tumor markers stayed low off everything for over a year. Currently I am on Herceptin and Monday going to start a trail for the vaccine in Bestheda on Monday. One has to already have had at least one round of chemo to be eligble for trail vaccine. This time I did opt not to have harsh chemo and found the trail. it is low dose chemo and vaccine. National Institute of Health and clinicaltrails.gov. type in breast cancer + vaccine.

Dx 8/4/2009, IBC, <1cm, Stage IV, 19/19 nodes, ER-/PR-, HER2+
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May 2, 2011 09:32AM mikamomof3 wrote:

I am SO glad I found this...I was panicked when I noticed not many of the threads had people with only Her2+.  I was just diagnosed a few weeks ago and am scheduled to have a lumpectomy tomorrow (5/3).  They'll place a port and do lymphnodes as well.  I am incredibly stressed and am concerned about my decisions.  I just want this tumor out and this was the quickest; i figure I can always have more surgery, but can't have less :) I am only 36 with no family history.  Just got divorced last year and have full responsibility for my 10 year old and 2 six year olds.  To top it off I live just north of Birmingham, AL and just got power back after 4 days......someone needs to open up a cancer spa!!!  I have never been this worried in my whole life and am waiting for that moment when I have a complete come apart!  Thank you all very much for your posts and congratulations on all the success stories!

Dx 4/22/2011, IDC, 1cm, Stage II, Grade 3, 1/3 nodes, ER-/PR-, HER2+

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