Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer — Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 04:30AM - edited Dec 10, 2012 05:55AM by TonLee

Posted on: Jan 31, 2011 04:30AM - edited Dec 10, 2012 05:55AM 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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Dec 17, 2012 08:04AM rozem wrote:

thinking of you today Tonlee...

fluff...i feel the same way about always feeling like i am on the bad side of the stats.  Less than an 1 percent chance of having BC with no risk factors at 42.  U/S and mammo, looks like its 50/50 its cancer.  After biopsy its cancer.  Hopefully not aggressive type if yes we will start chemo right away.  Guess what, its aggressive Her2, you start chemo next week...WTF just happened, you all know the drill.

SK - i am not even close to where you are in reconstruction but i would definitely do the fat grafting to fill in any areas.  I could really use a tummy tuck after this tamox belly.  I am blaming tamox.  Thats my story and im sticking to it

FEC-DH, LUMP, 25 RADS, TAMOX, BMSX with LD flap (worst surgery ever) Dx 8/2011, IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Dec 17, 2012 08:11AM ang7894 wrote:

Thinking of you TonLee..

All chemo done!! last one was April 30th 2012 radiation Done!! Last one was June 22nd 2012 tamox started on Sept 29th 2012 for 5 years!!! Herceptin until March 12th 2013 All Done!!! ER+ 68% PR+ 96% HER2NEU + 3 Angie Dx 12/1/2011, IDC, Left, 2cm, Grade 2, 0/2 nodes, ER+/PR+, HER2+ Surgery 12/11/2011 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 1/22/2012 AC + T (Taxol) Targeted Therapy 3/18/2012 Herceptin (trastuzumab) Radiation Therapy 5/7/2012 Breast, Lymph nodes Hormonal Therapy 9/28/2012
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Dec 17, 2012 08:34AM beckstar18 wrote:

TonLee, I'm the same as you, I never nap.  So when I felt sleepy at 11am I knew it had to be the Herceptin. I did get Zantac with it since I'd been having bad heartburn from the chemo, but that's it.  Anyway, I hope you get your test results back soon.  I know for me the worst part is always the waiting.  Thinking of you today.

Dx 10/18/12, IDC 1.5cm Stage I Grade 3 Triple+ 0/4 nodes *BMX w/TE 11/5/12 *Chemo/Herceptin (TCH) 12/4/12 *Tamoxifen 4/1/13 *Reconstruction (implants) 5/6/13 *Hysterectomy/ Oopherectomy 10/25/13 *Femara 2/1/15 *Craniotomy benign brain tumor 10/5/16
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Dec 17, 2012 09:08AM specialk wrote:

fluff - they put me in some kind of wrap thing - much like a bullet-proof vest - which I don't think is compressing me enough.  I am wearing my own Spanx from the waist down.  He did say I need to wear compression for a while, I have a call in to his office right now to find out if I can stop wearing the thing they put me in, and start wearing something that fits better. Was your shaper full-body? 

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Dec 17, 2012 09:42AM Pbrain wrote:

Thanks for the well wishes and pray I can make it Philadelphia this Wednesday without pooping in my pants along the way!  Embarassed  And yeap, herceptin makes me sleepy.  It also makes my nose run, but no headache, which is a blessing.



Ton Lee, we are thinking of you.  I want to hear good news!!

Jane~**~***~**~Put your head down and run like Walter Payton! And for those in treatment, this was my fight song www.youtube.com/watch?v=1q3LEa... Dx 9/26/2012, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+, Surgery 10/15/2012 Lumpectomy: Left Targeted Therapy 11/8/2012 Herceptin (trastuzumab) Chemotherapy 11/8/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Chemotherapy 11/29/2012 Taxol (paclitaxel) Radiation Therapy 3/10/2013 Breast Hormonal Therapy 6/13/2013 Arimidex (anastrozole)
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Dec 17, 2012 09:54AM Jennt28 wrote:

rozem and fluff (and others) - I feel the same. Am finding it impossible to see me on the good side of the stats. Positive node, LVI, extra capsular extension, 90% ER, 100% PR, Ki67 at 60-70%... Really, what else can I assume... And, this is what is making me cry almost daily at the moment and why I have an appt with the psychiatrist tomorrow. In some ways I weirdly feel like I will only be happy again when I find my fears come true and I move to stage iv. At least then I would be allowed to plan for goodbye, rather than having to be so damned normal and cheerful as an early stager. Weird huh?

Tonlee - I have no words for you. Just a big waiting hug from across the distance...

I finally have a day for my ovarian cyst surgery - this Thursday! The persistent complex cyst (means it might be cancer or turn into cancer) on my right ovary, and my right ovary are coming out. Hopefully keyhole surgery but since I only had my free TRAM at the end of September and there is mesh in there, the gynae surgeon has no idea if keyhole will be possible. He had to phone my plastic surgeon to get advice and has said that if it's not possible he will have to move to an open surgery which will leave me really looking like frankenstein with the free TRAM cut having already given me this scar from hip to hip. Either way, due to my recent abdominal surgery I will likely have more pain than would be usual. I'll ne waiting on pathology/histology results over Xmas :-/

Oh, and I'm being very casual and upbeat about this surgery with family and friends of course. Can't upset the kids, depress the husband or make my friends think this might be something serious when it might not be... so I continue to cry, sob, wail inside. It was such a relief to sit in the psychologists office last week and just spill all my real fears and feelings and cry for an hour.

Jenn

Jennt28 jennt28.wordpress.com/ - 3 x FEC, 11x weekly Taxol, 12 months Herceptin (end March 2013), 12 days rads (quit), BMX with recon, Tamoxifen Dx 12/1/2011, IDC, 2cm, Stage IIA, Grade 3, 1/2 nodes, ER+/PR+, HER2+ Surgery 12/6/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel Hormonal Therapy 8/1/2012 Surgery 9/27/2012 Lymph node removal: Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Free TRAM flap; Reconstruction (right): Free TRAM flap Surgery 1/27/2014 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Hormonal Therapy 3/9/2014 Femara (letrozole)
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Dec 17, 2012 09:58AM specialk wrote:

jennt - holding your hand from across the distance...

BMX w/ TE 11/1/10, ALND 12/6/10. 16 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 2013-2018. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+, IHC
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Dec 17, 2012 10:50AM ArleneA wrote:

Big hugs TonLee.  Hope you hear something really soon!

Dx 1/1/2011, IDC, 1cm, Stage IA, Grade 2, 0/8 nodes, ER+/PR+, HER2+ Targeted Therapy 3/27/2011 Herceptin (trastuzumab) Hormonal Therapy 9/10/2011 Arimidex (anastrozole)
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Dec 17, 2012 11:50AM - edited Dec 17, 2012 12:03PM by ashla

Jennt28.....

Again Jenn.....we all know and care about what you are experiencing right now.

Alas...this is the new reality for all of us. Having people we can lean on honestly and openly through these crises is vital . Unfortunately for many of us and for many reasons family and friends are not always a viable option.
We re here to listen.

Dx 10/13/2011, IDC, Left, 3cm, Stage IIA, Grade 2, 0/0 nodes, ER+/PR+, HER2+ Targeted Therapy 11/6/2011 Herceptin (trastuzumab) Chemotherapy 11/6/2011 Carboplatin (Paraplatin), Taxol (paclitaxel) Surgery 3/21/2012 Lumpectomy: Left Radiation Therapy 4/22/2012 Breast Hormonal Therapy 7/24/2012 Arimidex (anastrozole)
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Dec 17, 2012 01:51PM TonLee wrote:

Jenn,

Wow that stinks. 

Is there any way they could take the ovary vaginally?  I was offered a vaginal hysterectomy.....that way they wouldn't have to mess with your reconstruction.  I don't know if you want to go that route.....

You're right about this being the place to share.  I was thinking today that stats are stats, and if I stay here at BCO, with a few of the women I went through tx with (time frame wise) I'm going to see someone(s) recur.  It may be me.  Who knows.

So I couldn't type this all on my phone...and just wanted to share....my doctor looked about 12...lol.  It was kinda funny because he manipulated my legs and back to ensure it wasn't a joint issue.....and was oh so careful not to suggest mets.  I waited and waited, it kind of became a game dancing around the elephant in the room.  He was being so careful with my feelings!

He went through the whole exam, the prescriptions, blah blah blah.  Then at the end said, "Just as a precaution I'd like to get an xray of your spine."

I almost asked, "As a precaution for what?"  (This is a general practitioner not Onc).  lol

But I had mercy on the fourth grader and told him, yeah, of course we have to check that.  buwhahaha

He looked so relieved that I didn't have some sort of melt down.  THIS is why I go to a GP with problems and not my Onc.  My Onc has seen it all.  He has no reservations about skipping a PET scan for me.  None. 

GPs don't deal with cancer daily.  It makes them nervous.  They're more anxious about one of their patients having mets, complaining of pain, etc.  At least in my experience.

This GP said if there was anything fishy on the Xray...he'd send me for an MRI asap.

Um....awesome.

There was plenty "fishy" with my original cancer (we knew it traveled outside the tumor, had set up its own blood supply for instance), but the I-see-this-everyday-doc wasn't impressed;  didn't feel it warranted a scan. 

I can't fight without information.  IT's like going to war against the wind.

So I'll get the info in a few days...maybe tomorrow if the radiologists agree I need an MRI.  Also I didn't freak out about all the extra Xrays because TRAINING FACILITY.  More often than not, as I've mentioned before ad nauseum, I get the new kid.  I didn't say anything because it only cost me about 5 extra minutes, she was trying her best, and I wasn't in pain from her machinations.

My husband has no idea.  He thinks I went in for a little back ache. 

And who knows. 

He may be right.

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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