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All TopicsForum: HER2/neu Positive Breast Cancer → Topic: TRIPLE POSITIVE GROUP

Topic: TRIPLE POSITIVE GROUP

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: Jan 31, 2011 11:00 PM, edited Dec 11, 2012 12:25 AM 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."

community.breastcancer.org/for...

TCH x6 starting 12/7/2010. Diagnosis: 9/14/2010, IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+ >95%, HER2+++
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Aug 7, 2012 06:50 AM lago wrote:

Soltantino my onc told another patient I know who is HER2+ but ER-/PR- that her risk was the highest in the first 3 years. If she was going to recur it would  most likely be during that time.

Triple positive risk is also highest in the first 3 years. I think for anyone who is ER+/PR+ regardless of HER2+ status the first 5 is the most likely. I have also read that distant recurrence (time wise) tends to be more common in lower grade. So basically us grade 3 (and maybe grade 2) if we recur it's usually earlier than later. No guarantees though.

I would be interested in what your onc says.

BTW I too have read many times about the initial testing of Herceptin in patients with mets without chemo. The goal (Dr. Slamon) of herceptin initially was to replace chemo. 

DONE!! alturl.com/3o9ni • 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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Aug 7, 2012 06:55 AM Omaz wrote:

Sol and lago - It makes sense in that a recurrence for early stage is probably growth from stray bc cells in the periphery that survived treatment.  Since HER2+ tend to grow pretty fast, after 2 years those stray cells might get to a detectable size and be identified as a recurrence.  I would also be interested to hear what your onc says.
Dx 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 07:07 AM Omaz wrote:

sol- I used the elastogel caps just during the taxotere.  I had some trouble keeping my head cold during the long first infusion but did pretty good during the others.  Since I didn't use the caps during carbo I lost much of my hair, I am guessing about 70-80% BUT it came back in super quick.  I think the cold caps helped it come in quick.  So even if you lose some hair using the cold caps I think they still provide a benefit.  Are you icing your fingernails during the taxotere?  I also did this and was fortunate not to have a problem.
Dx 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 07:25 AM moni731 wrote:

Hi all! On the question on recurrence, my MO said that the most critical time would be the first three to 5 years out for triple+. My  recurrence % was 35. But, with HER2+ the risk only decreases and never completely. She also stated that breast cancer unlike other cancers, beyond stage 0, is never considered cured, only NED or remission. She wasn't trying to scare me, I asked for it straight up, no sugar. My RO said and I quote "your risk falls out at 35%, but we all know that the odds are really 0 or 100%, you'll either reccur or not". 

 As far as chemo possibly causing other cancer, it makes sense. It is a toxin, destroying cells and damaging DNA, but it's the best we have to date. Hopefully this will change for our children and grands. The same goes for radiation. My uncle was one those army guys that were made to witness the nuclear tests in the desert. He ended up with three different cancers with Leukemia finally taking his life. And yes, one was BC. 

Knowing now how chemo affected me and really didn't do too much for me, I probably would not have attempted it. Unfortunately, Herceptin did not work for either. Maybe something else will come along soon.

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 07:49 AM AlaskaAngel wrote:

It is hard to keep in mind the difference between mets patients and earlier stage patients, but doing trastuzumab alone with early stage is quite a different matter.

The comparison of use of trastuzumab for chemo-naive newly diagnosed patients with stage IV is subject to the rather significant limitation that by the time mets are established, the tumor burden is much greater than it is for those without mets.

That is a far cry from having the intact immune system deal with the far less significant tumor burden (excised, not still in place such as with mets) of earlier stage bc, through the use of trastuzumab alone.

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Aug 7, 2012 08:45 AM moni731 wrote:

Soltantio-No, I have not recurred, that I know of anyway! LOL The 35% recurrence chance was given to me after I completed what I could.

It was my uncle that was subjected to the blasts. Unfortunately, those men were not given a choice and it was done to them under the guise of 'not dangerous'. Haha. His experience had an overwhelming influence on my choice not to do rads. I simply do not trust it and will take my chances.

I agree that there should be some tracking (maybe to further a study) of individual choices in treatment. If someone chooses not to do a particular treatment that the doc's recommend (normally they could not do this for ethical reasons) but I am a firm believer in making your own decisions and standing by them. I wonder if any country that has a national health care system has tracked this?

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 08:53 AM lago wrote:

Moni is that 35% because you couldn't do all the treatment?

DONE!! alturl.com/3o9ni • 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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Aug 7, 2012 09:00 AM moni731 wrote:

Lago- Yes. Allergic (anaphylaxis) to all the chemos, Herceptin, etc. The chemo damaged my immune system to the extent that I had 5 rounds of septic shock and 11 episodes of sepsis, gallbladder disease, c-diff, MRSA, Klebsiella, a fungal inf and a yeast infection, thrombosis and plebitis where any IV's were, and renal failure, EF decrease. I do not take chemo lightly, it's serious stuff. Fortunately, most people don't react that way!

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 09:09 AM moni731 wrote:

Soltantio- My uncle was 62 when he died. And yes, he was angry about it. He was a biologist and was wary of this before he was exposed.

Also, I have residual diet issues. I have been forced to become (kicking and screaming) a vegan-ish person! No dairy, meat, gluten! I was so not into this type of diet before! I guess it is better, but I really hate it.

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 09:50 AM TonLee wrote:

GeeW,

Yup.  Tequila is my cancer elixir;)

Hey.....the exchange thread is a nightmare as far as I'm concerned.  There are so many different women coming and going...I can't keep track....so let me ask this here with you ladies.  And forgive me if this has been asked, and answered already.

For those who had to wear the band after exchange.  How long did you wear the band?  How long before you started exercising again?  Upper body?  I'm going to research how long it takes scar tissue to form the pocket....but I want real women, real world input as well.

Lago?  Anyone else?

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Aug 7, 2012 09:52 AM TonLee wrote:

Here is what the general internet sources say...

Capsule formation around a breast implant begins in the first few weeks after placement of the implant. By about 2 to 3 months, the capsule formation has completed, but continues to mature and remodel for several months following. A contracture occurs when the scar tissue begins to constrict around the implant causing distortion in the implant which may be visible, palpable, or both.

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Aug 7, 2012 11:03 AM lago wrote:

Tonlee I believe you asked me before.  I think it was something like 4-6 weeks at the most but I just don't remember. I really think it depends on if the new girls start dropping.

As far as exercise I have never started any chest exercises. My PS doesn't want me to doing them. My PT also said she didn't think I should do them. I actually waited 6 months before I started strength training again. I wanted to be sure everything was done. I hated starting only to have to stop again. Remember I did have a revision and more fat transfer 3-4 months after my exchange

Moni I too am shocked they kept doing chemo in your situation.

DONE!! alturl.com/3o9ni • 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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Aug 7, 2012 11:07 AM scottie52 wrote:

TonLee: Don't do a lot of tequila; my elixir was (is) a Rusty Nail! That's scotch and drambuie, or as I like to say "scotch and scotch".
Just spent last 2 hrs catching up on all the posts I've missed. I have always lived and worked in high pressure, stressful situations and don't see that changing any time soon. And with the BRCA2+, er/pr+, her2+, guess I was a disaster just waiting to happen!
But life goes on and we take it one day at a time!

Dx 6/29/2011, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+Surgery 07/18/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 08/22/2011 Cytoxan, TaxotereTargeted Therapy 08/22/2011 Herceptin
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Aug 7, 2012 11:13 AM jackboo09 wrote:

Hi to everybody
It's 2.30am here in UK and I am up scared to death. Following my period related breast pain last week, I think I have a change to my lumpectomy scar. A slight indent. This is how my first lump appeared.
I am 18 months out. Please don't let this be a reoccurrence. What acan you do at this time of the morning.

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 11:20 AM fluffqueen01 wrote:

i didn't wear the band, so can't help you there. I as allowed to go back to working out after a month. Started into it slowly and built up. I could walk all I wanted during that time.

moni-my friend's dad was the same and recently died of leukemia also. She gathered all the records and was able to prove that her dad was at the site, etc. The army just gave her mom $50,000 as settlement, and I think she is going to keep earning a monthly stipend.

BMX 2/10 w/TE, Taxol 12 wks/herceptin- 1 yr/tamox, TE’s fail/TE’s back in. Implants Nov. 4th- perky!" “It isn't for the moment you are struck that you need courage, but for that long uphill climb back to sanity, faith and security.” Anne M Lindbergh
Dx 1/2011, IDC, <1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:21 AM lago wrote:

jackboo last time you had a pretty big tumor at 2cm. That's what caused the indent. Granted any change you must go get these seen. Given that you have changes with your cycle this could be just that. Don't jump to conclusions but like I said  you need to get this examined. Being that you had a lumpectomy you do want to be very over cautious.

Please keep us posted

♥ ♥ ♥

DONE!! alturl.com/3o9ni • 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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Aug 7, 2012 11:30 AM jackboo09 wrote:

Lago, yes my tumour was 2.6cm at surgery. I had a mammo middle of March but how much reassurance can I gain from that? I will try and get an US tomorrow if I can persuade the docs! Have been in with similar worries before. Don't want to be neurotic but not letting it go either.
I've been working out too. Could that be why the scar is a little stretched/different. So tired. 3am now.
X

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 11:32 AM Moonflwr912 wrote:

Jackboo, deep breath. You will get it seen quickly. Much love and hugs. We will pray for it to be nothing.

Moonflwr912 Dx- DCIS R 11-11, stage 0, BMX, SNB, with TEs 12-8-11, found IDC 1.6 cm in L that I had removed as precaution. Lost L TE Jan 17 to infection., chemo started Feb 16, 2012
Dx 12/8/2011, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:32 AM jackboo09 wrote:

It's at times like this that I begin to question having a lumpectomy and not a full mx

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 11:33 AM Moonflwr912 wrote:

Jackboo, you did the best you could, with the info you had.

Moonflwr912 Dx- DCIS R 11-11, stage 0, BMX, SNB, with TEs 12-8-11, found IDC 1.6 cm in L that I had removed as precaution. Lost L TE Jan 17 to infection., chemo started Feb 16, 2012
Dx 12/8/2011, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:35 AM moni731 wrote:

Hi all! No, I had to stop the chemo. Only got 1 dose of AC and 1.5 doses of TCH, twelve of Herceptin before the MO said no more. We also tried Abraxane, not sure of that number, pretty out of it. Most everything else happened after the chemo attempt was done. The last 4 Herceptin doses were done in the hospital in a procedure called rapid-desensitization, to no avail. I hope that was enough. I am kind of leary telling people all of this as it would scare the beejeezes out of me. I have to emphasize that THIS IS NOT THE NORM. My MO said she only had one other case in 25 yrs of practice that this happened with and not nearly to my extreme. My immunologist brought my case before a convention board and no one else there had had this much trouble. My MO said I should consider a Mastectomy, but I cannot even be considered for reconstruction for being allergic to everything. I've lost enough at this point, not going there.

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:37 AM jackboo09 wrote:

Thank you Moonflower. This breast has changed a lot in size and shape since all the treatment. Will go to the clinic and get checked. So tired of this disease reducing me to this state at regular intervals.

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 11:43 AM moni731 wrote:

Jackboo - Deep breath. Scars are funny things, and tend to change a lot. Being observant is all we can do. Let us know. Thoughts with you...

Non omnia terrentia nocent.
Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:46 AM jackboo09 wrote:

Moni, thank you. There is nothing I can do now. Will go to the clinic and see what they say. I can't thank everyone enough for the support. Will report back when I know.

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 11:47 AM ArleneA wrote:

I agree Jackboo:  DEEP breath!  Try to get a few hours sleep and then see the onc tomorrow.  Do keep us posted!

Dx 1/1/2011, IDC, 1cm, Stage Ia, Grade 2, 0/8 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:50 AM Moonflwr912 wrote:

MonI, I so sorry you had to go through that. That was awful. I am allergic to many antibiotics, so they think hard before giving me any, but allergic to chemo must have been a shock. This Damn disease just plain sucks, and so do some of the treatments.

Moonflwr912 Dx- DCIS R 11-11, stage 0, BMX, SNB, with TEs 12-8-11, found IDC 1.6 cm in L that I had removed as precaution. Lost L TE Jan 17 to infection., chemo started Feb 16, 2012
Dx 12/8/2011, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Aug 7, 2012 11:51 AM jackboo09 wrote:

Thank you Arlene. Maybe some Benadryl will help. Thumping stress headache now. I hope to be in the position of feeling silly tomorrow if I'm given the all clear.

Stage 2b Her 2 + Est + one pos node Age 40
Dx 2/27/2011, IDC, 2cm, Stage IIb, Grade 3, ER+, HER2+
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Aug 7, 2012 12:06 PM Jennt28 wrote:

Hi jackboo,

I hope it's nothing :-)

One thing that helps me with the stress is to point out to myself that I'm not dying today and I'm not dying tomorrow. That seems to keep me pretty calm. Sometimes a good cry helps too of course...

Regards Jenn

Jennt28: 3 x FEC (done!), 11x weekly Taxol (done!), 12 months Herceptin (now), 12 days rads (planned 28 but quit), planning BMX (now))
Dx 12/1/2011, IDC, 2cm, Stage IIa, Grade 3, 1/1 nodes, ER+/PR+, HER2+Targeted Therapy HerceptinSurgery 12/07/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 01/12/2012 Cytoxan, Ellence, fluorouracil, Taxol
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Aug 7, 2012 12:19 PM dancetrancer wrote:

Jackboo - I had a BMX and just had a small nodule evaluated last week (benign, thankfully) AND the doc found another nodule that I missed that now needs further follow-up.  So a BMX is not fool proof for not having post-tx scares - don't beat yourself up.  I know how scary this is - hugs to you - hoping you can get it checked out ASAP so you don't make yourself sick with worry.   My mantra I say to myself is "worrying isn't going to change the outcome".  That helps me refocus.   

TCHX4: 4/10 - 6/13/12; 33 rads; BMX w/fat grafting; DX: 7/29/11 @ age 43: Stage 1A on L (3 mm IDC, Gr 2 ER/PR+, HER2+) 0/3 nodes w/ 6 cm DCIS; Stage 0 on R (2 mm DCIS Gr 2). IDC was missed on L by first 3 path reviews; see bio for details.
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Aug 7, 2012 12:24 PM Omaz wrote:

jackboo - If you have been working out the area could be a little swollen and that might make the scar seem indented. 
Dx 6/21/2010, IDC, 2cm, Stage IIa, Grade 3, 0/2 nodes, ER+/PR+, HER2+

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