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Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 05:30AM - edited Dec 10, 2012 06:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

http://community.breastcancer.org/forum/6/topic/797454



IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 11:19AM lago wrote:

I'm sure they will try the eye drops first. I find it hard to believe they will got immediately for the invasive procedure especially since you are still doing chemo.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 3, 2011 11:24AM TonLee wrote:

True...besides the fact I won't be on board for a stint...I'd rather just have the watery eye.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 11:25AM Smile_On wrote:

My watery eyes were one of the 1st side effects to go away after I stopped Taxotere, before the body aches even, hopefully the same holds true for you ladies as well.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 3, 2011 11:30AM lago wrote:

Smile on did you get Taxotere/carboplatin/herceptin x6 or AC-TH? I think being taxotere for 6 tx instead of 4 tx can draw out the SE a little longer. I'm just being realistic.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 3, 2011 11:37AM Smile_On wrote:

Lago,

I did 3 FEC and then 3 Taxotere so the SE's may be different.  Every body is different in how it handles things as well.  I just know for me that was one of the SE's that went away after about 4 weeks while body aches stayed a bit longer and my neuropathy and nail lifting is still happening 3 months out.  I definitely get that it is super annoying while it is happening and whole-heartedly agree to try out the tear drops your doctor recommended.  I know for my eyes they were either watering or super dry.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 3, 2011 01:58PM geewhiz wrote:

Smile, I am STILL getting the nail lifting. Taxotere ended in March and herceptin ended in December. The neuropathy was really mild since I did frozen peas/ice on them but it was all gone in about a month.

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Feb 3, 2011 02:07PM worldwatcher wrote:

Triple + here as well. Waiting for results from OncotypeDX.  Will probably start Tamoxofen in a week or two.

Lumpectomy, 7/2010, clean PET scan 8/2010, Contura five-day rads, No chemo. Tamox 3/11, clean bone scan 5/2011,clean mammo/ultrasound 8/2012, small seroma gradually shrinking with no problems.
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Feb 3, 2011 02:17PM suzieq60 wrote:

Libraylil: Thanks - we were safe from the cyclone - it was way up north. I was very lucky my lobular was found at only 11mm given it's sneakiness - now that was a miracle. The new one was IDC grade 2 and even smaller - only 5.8mm. You can see it on my mammo, but it only appeared on one view which is why it wasn't reported. I showed my onc the old mammo and he said it would have been a hard call to make back then.

Sue

2nd diagnosis October 2010 - IDC 5.8mm node negative - missed on mammogram in October 2009 Dx 10/13/2009, ILC, 1cm, Stage I, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 3, 2011 03:23PM - edited Feb 3, 2011 03:24PM by libraylil

This Post was deleted by libraylil.
Dx 7/15/2010, ILC, 3cm, Stage IIB, Grade 3, 3/14 nodes, ER+/PR+, HER2+ Chemotherapy 8/4/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/7/2010 Herceptin (trastuzumab) Surgery 1/4/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 4/6/2011 Breast, Lymph nodes Hormonal Therapy 7/5/2011 Arimidex (anastrozole)
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Feb 3, 2011 03:45PM - edited Feb 3, 2011 03:46PM by TonLee

Hey Libra, I just went to respond to your post and now its gone...lol

I wonder if my node involvement has something to do with the location of my tumor?  It was at 11 o'clock, close to the armpit.

My Onc said you don't have to have a tumor at all for it to spread to the lymphs, that technically from the moment the abnormal cells start multiplying they can spread...it doesn't require a tumor and is why they stopped doing radical breast, muscle, etc removal.

Also, the lymph system is only one way for it to spread, which is why you can have no node involvement and still be a Stage IV.  There are some women on this board like that.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 04:04PM Omaz wrote:

TonLee - my tumor was at 11 too.  I noticed on a picture somewhere that that 'quadrant' is the most  commone area to get tumors. 
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Feb 3, 2011 04:18PM webu wrote:

Tonlee - Let us know if your ophthalmologist has any good suggestions, because I am having the same problem. It can be embarrassing because people keep thinking I'm crying.

Lumpectomy 12/6/11; TCH x 6, weekly Herceptin during chemo and then every three weeks for a total of twelve months - start date 1/14/11 - chemo will be followed by rads Dx 11/12/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 3, 2011 04:23PM lago wrote:

My "mass" was 11-3 o'clock or at least that's what the radiologist doing my biopsy told me. That's like 1/3 of my breast. I was a little freaked out.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 3, 2011 04:37PM - edited Feb 3, 2011 04:38PM by TonLee

Omaz- what's really weird for me about that spot is I nursed both of my sons.  The first for 12 months, and the second for 18 months. 

But I remember sitting in my lazy-boy rocking the baby 8 years ago and rubbing that spot over and over with the heel of my hand, thinking...maybe I am getting a clogged duct because my right breast is not producing milk like the left, and it feels "weird." 

I wonder if it started then.

Webu-I will let you know!  When my eyes water, my nose runs... I don't know why it's always been that way...but in this case what "runs" out of my nose is often blood tinged...or just plain bloody.

Gross-ness.

Lago...wow.  I probably would have freaked out.  I also had DCIS in situ or whatever it's called...but my path report says it wasn't a large area. 

My Onc said my legs are def. swelling....now that I can't drink green tea, it will get so much worse....that stuff works great on SE.  Of course WHY it works great may not be so great ... lol.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 04:48PM lago wrote:

TonLee less than 25% of my tumor was DCIS too. They only measure the IDC part in my final path. Yes my nose runs when my eyes water. The bloody-ish nose discharge with some bloody nose happens 1 week after infusion. It lasts about a week. My onc says its from the Herceptin.

DONE!! goo.gl/IoaN6U • Tattoos 2.7.2012 • Nipples 10.6.2011 • Exchange 6.24.2011 • Chemo 1.18. 2011 • BMX 8.31.2010 Dx 7/13/2010, IDC, 5cm, Stage IIB, Grade 3, 0/14 nodes, ER+/PR+, HER2+
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Feb 3, 2011 05:01PM saralmom wrote:

I definitely remember having my eyes running during my Taxol phase of chemo.  That, the Herceptin drippy nose, losing my eyebrows and eyelashes (thought maybe I'd be spared since I kept them during AC), and the black/lifting/oozing fingernails made my summer kind of suck.  However, all still way more manageable than the nausea/exhaustion of the AC. I My nails are now mostly fine, (toenails are still a bit dark but growing out), my eyes are fine, but the runny nose is still annoying - and I have it constantly.  I actually think it has been worse this week than ever.  

Speaking of eyes - has anyone noticed their eyesight getting worse since starting treatment?  I was wearing reading glasses a bit before chemo, but now I literally have to wear them in order to see anything close up.  So weird. 

Dx 2/3/2010, IDC, <1cm, Stage IIA, Grade 3, 2/16 nodes, ER+/PR+, HER2+
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Feb 3, 2011 05:03PM Omaz wrote:

TonLee - My right breast (affected one) wasn't as good of a milk producer either and my daughter preffered the left.  I also had a couple times those knots form during breastfeeding from small infections, I forget what they are called, but I can't remember where they were. 
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Feb 3, 2011 05:05PM saralmom wrote:

Tonlee - I remember having issues with my bad breast during nursing too!!!  It was always smaller than the left side, and I swear all 3 of my kids preferred the other, healthy one.  I actually had a bloody nipple on my good breast b/c my 3rd child would really only nurse on that one and it got so worn down!  And whenever I did get a clogged duct (2 bad ones I remember) they were in the bad breast.  And I nursed babies 18 years ago, 15 years ago, and 9 years ago.  So weird!  

And I had yearly mammos starting right after my 9 year old stopped nursing.  Nothing was ever detected.  Not even at the one 6 months before I found the damn lump when I was getting dressed.   

Dx 2/3/2010, IDC, <1cm, Stage IIA, Grade 3, 2/16 nodes, ER+/PR+, HER2+
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Feb 3, 2011 05:06PM dragonfly1 wrote:

Hi everyone, I haven't been on the post for a while because I've had so many appointments and phone calls that my head is spinning! Had the MUGA scan earlier this week and then went to presurgical testing for my port. The port is scheduled for 2/8 and they finally got the insurance approval for the chemo to begin on 2/15 (my insurance prior auth dept was shut down by this horrible weather earlier this week!).

So, it looks like I'll have TCH x 6 and my MO is going to give me Herceptin on week 2 and 3 of each cycle (any opinions about receiving Herceptin every week during chemo vs. every 3 weeks?). I've been given the prescription for the steroid but the MO is trying to figure out what to use to control nausea because she said a lot of the meds can cause headaches and I have terrible migraines (i.e. 10 per month on average)-still waiting to hear what she's going to use.

Seems like it has taken forever to finally get to this point...

My "jump for joy" www.youtube.com/watch?v=5jUmLk... Dx 11/29/2010, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 1/7/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Targeted Therapy 2/15/2011 Herceptin (trastuzumab) Chemotherapy 2/15/2011 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 6/22/2011 Hormonal Therapy 9/1/2011
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Feb 3, 2011 05:12PM Omaz wrote:

dragonfly - Good to hear that you have a plan!  I had herceptin every 3 weeks with the taxotere and carboplatin.  I think my onc does it because it accesses the port less often to minimize infection maybe and also it is sortof easier.  Many women have it weekly though during TCH.  Effectiveness wise I think the two approaches are similar as far as I know.  One thing, please check out icing your fingers/toes during taxotere infusions to hopefully prevent nail problems.  If you are interested I have a couple articles, you can PM me.  I also used an elastogel cap to minimize hair loss and I can tell you about that experience as well (pro and con).
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Feb 3, 2011 06:03PM TonLee wrote:

Lago, it was only lasting a week, until my 3rd TX, now it is still going!  I have my 4th treatment Tuesday.

Sara, I have acrylic nails on (still), and so far so good.  I also started icing my fingers at the second treatment...I iced my mouth too, but I can't tell a difference between that and not doing it.

Omaz & Sara, isn't it weird what we remember about nursing?  When I did it, nurses constantly told me how good it was for my boobs...how it lowered my chance of getting BC.  If it lowered it..then I was just meant to get it I guess.

My boys BOTH preferred my healthy breast.  Sara, I found my lump too...toward the end there it grew (really took off after they poked it during biopsy) so big you could see it with the naked eye...the mammo machine STILL didn't pick it up.

Dragon, I want to say "great you got things worked out" and it is, but I'm not happy you have to start treatment.  I dread my final three because the first three went so well.  I do Herceptin every week.  It's no big deal for me to do it that way.  (Except when there is an ice storm and the hospital is closed!)  In fact getting it every week helps keep my digestive process moving...it's like taking a mild laxative every week...which helps with the bloated feeling...so far.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 06:06PM TonLee wrote:

Just an observation....treatment can be so different for everyone....

A woman I started treatment with has lost 16 pounds and says food is repulsive, makes her nauseous, etc.

Before BC I liked being hungry, it kept me edgy..lol.  So I didn't eat until full.  Now I'm hungry all the time, even when I should be sick!  I haven't gained any weight because I'm monitoring it close...but the hunger makes me feel sick and is always there....so I try not to get hungry....what's up with that?

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Feb 3, 2011 06:16PM Omaz wrote:

sara and TonLee - I found my lump too, watching TV.  Mammo didn't catch it previous year even though doc said it had been growing for a few years.
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Feb 3, 2011 06:40PM webu wrote:

I hadn't thought about this, but my youngest refused to nurse on my right breast (the bad one) for the last few months I nursed her. Of course, that was 18 years ago, but who knows. I always thought DD was just being difficult, which she has continued to do for the last 18 years :)

Dragonfly - Glad to hear you finally have a plan in place. I know it was a relief when I finally knew what was coming. I am also getting the Herceptin every week.

TCH #2 is tomorrow.  Fortunately we have mostly dug out of the snow here. 

Lumpectomy 12/6/11; TCH x 6, weekly Herceptin during chemo and then every three weeks for a total of twelve months - start date 1/14/11 - chemo will be followed by rads Dx 11/12/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2+
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Feb 3, 2011 06:56PM Omaz wrote:

Good luck tomorrow webu - drink drink drink!
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Feb 3, 2011 09:55PM kriskat wrote:

Hey guys!  Had my drain taken out today from the lumpectomy on Monday.  I wish someone had warned me to stay on the pain meds until that was removed-it hurt like a mother-lol.  No path report until next week so still not sure if we got clear margins or not.  I had planned to go back to work Monday but the dr wants me off next week too.  I am going to go kind of crazy-I think!

Dx:1/6/11; IDC Stage IIb 2.0 cm,1/11 nodes, ER/PR/Her2+
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Feb 4, 2011 06:03AM Smile_On wrote:

Kriskat,

Sorry you had so much pain with your drains.  I was off pain meds by the time the drains were taken out and did okay, but I had a bilateral mastectomy and was/am pretty numb in that area.  Must feel great to have those drains out though...I loved getting some freedom back.

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 4, 2011 06:51AM negirly wrote:

I'm Triple + too... More of a lurker than a poster...

Diagnosed at 38 mixed IDC/ILC and DCIS.  Did chemo, mastectomy (unilateral), rads, tamoxifen, lapro hysterectomy (bc tamox made my fibroids grow) - but kept one ovary.  Had my implant recon last year.  I had wanted a flap (DIEP) but I didn't have enough fat.  It is nice to see so many others with a similar diagnosis.   I was in the bisphophate study (boniva daily) but stopped after the SanAntonio BC conference showed no clinical benefit (my baseline dexa scan was high normal).  That was my choice, I was worried about the possible cumulative side effects and didn't want the risk if the benefit wasnot proven. 

Thanks for all the good information.

Karyn

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Feb 4, 2011 06:57AM negirly wrote:

DaragonFly

I also get migraines and they used Aloxi/Emmend rather than Zofran/emmend and I did well with that.  Zofran can cause more headaches.  I also took less of the dextamethasone than prescribed and my onc nurse told me lots of people do this.  I'm not recommending it but perhaps it is something to ask about.  My only noticeable side effect was heartburn. I ate lots of yogart which may have helped my stomach.  Everyone is different on what works for them.  

 Good luck with your port.  I loved mine.

Karyn

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Feb 4, 2011 08:02AM libraylil wrote:

kriskat  hoping for the lovely clean margins.  I go back to work Monday (I took 5 weeks off).  Still have some soreness in the armpit.  The incision rubs on my bra so I'm going to look for some fleece or something soft to keep the girls happy.


ALL  not to be unusually gross, but does anyone have bo under the arm with the lymph node removal?  I have it just in one spot and it is a killer.  Just gross.

Eyes and nose  My eyes watered after about TCH number 3 and my nose ran.  I attributed some of it to no nose hairs and no eyelashes.  Just so attractive to have a big string fall out of your nose onto your sweater.  I also had the bleeding in the nose and was told that was Herceptin.  Keeping vaseline in the nose holes after tx really helped.  The heat is running so much and is dry.  Putting vaseline in the nose also helped the leakage.  My eyes teared and watered until about a month after last tx.  Especially in the cold air.  

dragonfly I also had Herceptin during chemo on your schedule.  After tch finished and surgery I will now go once every 3 weeks for a triple cocktail.  I call it my Thursday afternoon happy hour.

libray lil

Dx 7/15/2010, ILC, 3cm, Stage IIB, Grade 3, 3/14 nodes, ER+/PR+, HER2+ Chemotherapy 8/4/2010 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/7/2010 Herceptin (trastuzumab) Surgery 1/4/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Radiation Therapy 4/6/2011 Breast, Lymph nodes Hormonal Therapy 7/5/2011 Arimidex (anastrozole)

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