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Old 04-12-2013, 08:53 AM   #1
embur102
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Her2 and mets

Hi all!
One year ago today was my diagnosis, and I am a bit contemplative today.

One burning question....is the degree of positivity of HER2 related to the rate of metastasis? i.e. I am HER2 +++, is my chance of mets higher?

I have googled this, also, but I always find personal feedback from people-who-know most helpful.

Blessings to each and every one of you courageous and beautiful HER2 women!!

Happy Spring
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Dx 4-12-2012
R unilat Mx 5-25-2012 (no reconstruction)
Stage 2B, Grade 3, Her2+++, Er + (15%), Pr -
4.2 cm, 2/14 nodes +
3 AC, 4 T/H
Zoladex 4 months
Oophorectomy Feb 2013
AI daily
Herceptin every 3 wks until Sept 2013
Gamma Knife June 2014, 2 cm brain met
Liver mets Oct 2014
Taxotere/herceptin/perjeta-CLEOPATRA trial Nov 2014-Mar 2015


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Old 04-12-2013, 11:46 AM   #2
Midwest Alice
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Re: Her2 and mets

Hi, I'm interested in seeing if my answer is correct. The +++ means how well the cancer may respond to targeted treatment. So the more + the better? There are many who know a lot more than I do . They will tell us. Good question. Make it a great day.
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

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Old 04-12-2013, 03:15 PM   #3
carlatte7
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Re: Her2 and mets

I was +++ also and certainly responded well...wondering the same thing last week on my anniversary date
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Age 54, married farm wife/school nurse/mom of 5 adult children...March 2012- found 2.5cm hard, non-painful mass on bse. It was not there, and then it was. Yikes.
Biopsy- DCIS, IDC, er-/pr-/her2+++, grade3. 1 node suspicious on us. Biopsy +.
Plan was for Neoadjuvant TCH x6, Herceptin q3w x a year.
May1- first chemo.
May 5- I could no longer feel the mass. Really. Neither could my oncologist.
July 2- 4th TCH- Oncologist cancels last 2 tx due to "complete response"
August6- lumpectomy with axillary node dissection. No disease present in breast. 1 out of 14 nodes + (4mm)
MUGA #2- 72%
Finished 30 rads Oct '12. Mild lymphedema noticed when I had 2 rads left.
Continue Herceptin q3w until next May
April '13- first mammo since surgery- calcium deposits that are " not concerning." Well, they are concerning to ME! Turned loose from surgeon for 6 months! One more Vit H, will make plans then for port removal.
Oct '13- no change in calcium deposits. "See ya in 6 months!" Keeping port for now.
March '14- oncologist says return in 6 mo.
April '14- mammo unchanged. Surgeon will see me in 6 months but no mammo for a year unless something changes. Its getting easier, but oh, boydo i hate that scanxiety! Keeping port until 2 year anniversary of last Herceptin.
Sept'14- bloodwork good, return to onco in 8 months.
Oct'14- surgeon will see me in April '15. Moving on.
May '15- mammo unchanged, keeping same schedule. Tumor markers soon and if all is well port comes out.
July '15-tumor markers normal. See onco in a year. Appt. for port end of month. First grandchild born July 1st- for today, life is good.
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Old 04-12-2013, 05:02 PM   #4
Mtngrl
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Re: Her2 and mets

Happy cancerversary! Congratulations. You made it through a hellish year.

I think it's natural to think about what you're thinking about. Humans have an innate need for order, predictability, understanding.

Having said that, though, you're not going to get it in this case.

My advice is to live your life as fully, gratefully, and joyfully as you can, so that whatever happens, and whenever, you don't have too many regrets. This is good advice for anyone, of course. People who've had cancer are just much more likely to take it.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 04-12-2013, 09:07 PM   #5
Mtngrl
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Re: Her2 and mets

Well, Karen, then happy cancerversary to you as well.

I'm thinking of going to Ireland for mine.
__________________
Amy
_____________________________
4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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Old 04-12-2013, 11:24 PM   #6
Jackie07
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Re: Her2 and mets

Happy cancerversary!

My diagnosis in 2007 was also a 2B. I wasn't able to complete the one year Herceptin due to heart issues. But so far so good.

I think the H+++ (Grade 3) means the cancer cells divides faster than Grade 2 (more copies of Her2 genes are found), thus mor aggressive. But it could also mean that it responds better to Herceptin.

Went through genetic testing, but did not take preventive measures until another cancer incident happened to my family. Though all three of us have different cancers, they are sort of related (HNPCC). So I did a prophylactic hysterectomy/oophorectomy. The surgeon said there was hyperplesia on the lining of the uterus already. So the preventive measure was the right move.
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NICU 4.4 LB
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3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
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Old 04-13-2013, 06:48 AM   #7
Debbie L.
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Re: Her2 and mets

Good morning. Happy anniversary to all.

I remember asking the same question (what does level of HER2 mean) and not getting any answers. I thought I remembered a good explanation of this on this website but I can't find it this morning. Maybe someone else knows the way?

First of all, HER2 +++ (3+) is the report from one way of testing for HER2. Cancers that test 1 or 2+ (+, ++) by this method (IHC) are not considered to be HER2 positive, although the 2+ ones are usually double-checked by another method (see below). So almost, if not all of us on this list have or had HER2+++ (3+) cancer. Reporting it as HER2 +++ simply means "HER2 positive". That doesn't really say anything about how much HER2 there was, compared to other HER2 positive cancers.

But as with everything else, it's not quite that simple. The newer (but not necessarily better) test for HER2 is called FISH, and it reports out a number (a ratio but it's written as just a number). For that test, above 2 is usually considered HER2 positive. As I said above, if the IHC test is done first and comes back 2+ or 3+, typically it's double-checked with a FISH assay. The FISH report does quantify the amplification of HER2. So you'll see HER2+ that has a FISH of 2.5 and those that have FISHes well above 10 -- a wide range and all are "HER2 positive". Most of the research that has tried to link the level of FISH to either outcome (prognosis) or response to Herceptin has not been able to see any correlation.

To further muddy the waters, it's interesting that they are actually doing studies now of HER2 targeted treatments (Herceptin and/or vaccine) for those who are technically considered HER2 negative but are now being called "HER2 low expressing" because the cancer has some HER2 (1 or 2+) but not enough to be called positive by current standards (less than 2 on the FISH assay).

Here's a pretty good explanation of the tests, if you want to know more, but it doesn't answer your question either (smile). http://www.nccn.com/about-nccn-com/6...-category.html

There have been a few small studies that seemed to find some correlation between HER2 level and outcome (or response) but most have not. I did see something very recently about response to TDM-1 being better in higher levels of positivity. Okay, here's one write-up of that (it was at AACR), and it's not FISH they used. They tested for HER2 in yet another way (mRNA). They only report differences in response for the T-DM1 arm, not for the xeloda/tykerb arm. Or at least, if that was different, it's not mentioned in this article. One subgroup analysis is not enough to give us an answer but I'm sure they will keep looking. http://www.oncologynurseadvisor.com/...ticle/288201/#

So the answer to your question is sort of "no". First of all, 3+ is not necessarily "high", it's just positive. And if it were high, we don't know what that means but probably it doesn't mean anything, or someone would have figured it out by now.

Debbie Laxague
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Old 04-13-2013, 10:28 AM   #8
AlaskaAngel
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Re: Her2 and mets

To that I'll add that the assumption has been that the chemo works better on faster-dividing (aggressive) cancers, whether or not the trastuzumab does -- and breast cancer that is determined to be HER2 positive (HER2+++) is more often judged to be made up of faster-dividing cells.

Yet chemotherapy may not be as useful as combo monoclonal antibodies for some of these faster-dividing cells, if the information from the lapatinib-trastuzumab combo but no-chemo trial is accurate as more time goes by.

And there also may be some hormonal effect upon the fast-dividing cancer cells for those who are hormone-receptor positive, in that those patients tend to recur later than HR- patients, if they do recur, whereas if a HR- patient can get past the first few years they tend NOT to recur later on.

Mixed in with that is that we do not have information telling us how many patients may recur due to the chemotherapy itself or perhaps its support drugs or both.

A.A.
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Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
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Old 04-13-2013, 11:11 AM   #9
Lien
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Re: Her2 and mets

The bottom line is: we really don't know. What we do know is that for Her2 positive cancer we have an extra set of treatments that can be very effective. You could see it like this: all cancers are different and some are immune to some kinds of treatment. Yours is vulnerable to both Her2 targeted therapies and those that attack the Estrogen receptor. Meaning that you have more arrows to shoot at the cancer with.

I've heard people say that nowadays Her2 positive cancers are easier to treat than some of the other types. I'm not sure this is true, but until we know for sure, I hang on to that theory.

Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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