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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 07:30 AM, edited Dec 10, 2012 08:55 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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Jun 13, 2012 11:06 AM TonLee wrote:

There are a few studies on the advent of allergic reactions with menopause...I saw them waaaay back in 2010 when I started researching.  The study I read suggested that a significant percentage of women have adverse reactions/allergic reactions while peri and postmenopausal they never had before in their lives...like nuts, ibuprofen, etc.

Perhaps for a few of you this might be the case...chemopause may be bringing this on?

My Onc told me the reason for the Benadryl wasn't the Herceptin, but Taxoterrible.  Taxol/taxene is taken from some sort of tree (again I knew it then, now I don't need it!) and they based our Benadryl on the old Taxol txs.....because some women were allergic to Taxol (tree)..but taxoterrible is actually a WHOLE DIFFERENT PART, but there isn't an any current research YET on taking it without Bendadryl.... when they started substituting it in place of traditional taxol, they just transferred the pre-meds too...because studies showed they worked with Taxol.

He asked me to take it because if I was somehow allergic to the taxene I would still have symptoms, they wouldn't be severe but they'd still exist is a more moderate form. 

The next tx I asked to skip it.  The nurses were very uncomfortable with that, but I made that choice because not only did I not have a reaction after the first TCH, I didn't even really feel bad at any time in the days to follow, except for being tired from the Benadryl. (Which for some strange reason takes me about 24 hours to shake off.)

So I declined it at the 2nd tx, Onc okayed it, said to just watch me. 

I was fine. Never had a problem. And best of all was able to spend the rest of my day productively at the gym, or going to the grocery store, whatever. And no one had to "come with me" to chemo like I was disabled or something....not that there is anything wrong with it but I didn't want to be there...so I didn't want anyone else to have to sit there either...

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Jun 13, 2012 11:51 AM lago wrote:

Taxotere is derived from the Pacific Yew tree. I think from the needles. Taxol is from the bark of the same tree.

I was on Zyrtec the entire time on chemo but was told to stop once chemo ended. I wonder if I even needed it. I got benadryl only at chemo infusion time. The first chemo I was a space cadet for a week. I think from the Zyrtec but once my body got used to it I was fine. I'm sure if I took it today I would be back to space cadet again.

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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Jun 13, 2012 11:56 AM Kitchenella wrote:

Ton...interesting about menopause and allergies.  I have upper respiratory seasonal allergies that only showed up after menopause.  Never thought that had anything to do with them.

Peggy 

ACX4 ( Bi weekly) THX 12 (weekly) Herceptin for a year and rads at the end of the year.
Dx 11/14/2011, IDC, 1cm, Stage IIa, Grade 3, 1/20 nodes, ER+/PR+, HER2+
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Jun 13, 2012 12:38 PM kltb04 wrote:

Just curious as to how many of you may have had Taxotere and how long it took for your SE to show up - several on the March 2012 board have started Taxol with horrible SE and a few on Taxotere.  I am morning #3 past my first Taxotere plus Herceptin.  Feel like I am waiting for the other shoe to drop.

Dx 2/17/2012, IDC, 3cm, Stage IIb, Grade 3, 1/4 nodes, ER+/PR+, HER2+Surgery 02/27/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 03/19/2012 Adriamycin, CytoxanChemotherapy 06/11/2012 Taxotere
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Jun 13, 2012 12:54 PM Kelloggs wrote:

kltb04 - I had Taxotere with Carboplatin and Herceptin.  I had infusions on Thursday and usually my bad days were Sunday into Monday.  It wasn't bad, felt like the flu with aches.

Kelly
Dx 10/18/2011, IDC, 1cm, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2+Surgery 10/25/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 12/08/2011 carboplatin, TaxotereTargeted Therapy 12/08/2011 HerceptinHormonal Therapy 05/01/2012 TamoxifenRadiation Therapy 05/01/2012 External
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Jun 13, 2012 02:13 PM Moonflwr912 wrote:

TCH here. Bad days Sunday through Wed.

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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Jun 13, 2012 02:25 PM moni731 wrote:

kitb04- my first reaction with Taxotere was with the beginning of the infusion. Chest area got red/splotchy, hives, swelling of my throat, etc. even with Benadryl 75mg beforehand! Needless to say, never got it again.

Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Jun 13, 2012 02:41 PM, edited Jun 13, 2012 02:42 PM by TonLee

Peggy,

One of my gal pals is in menopause now, naturally, and she is allergic to a bunch of different things, while before she was allergic to nada.

I wonder if maybe that is where my Sulpha allergy came from.  I've never been allergic to anything, but during chemo my PS gave me sulfa and it about killed me...couldn't breath, ER visit, the whole sha-bang.  They said I was VERY allergic to it...but I'm sure I've taken it at some point in my life before without complication.

Oh well.  I'm sure there will be studies aplenty on it in about 30 years....once all the boomers are done and truly through menopause....

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Jun 13, 2012 03:58 PM SpecialK wrote:

klt - infusions were on Thurs, bad days Sun-Tue., with some random issues continuing for a week or so - but nothing that kept me from functioning.  I think Taxotere is a little more intense than Taxol, as some who have issues with Taxotere are switched to Taxol, but everyone reacts differently - you may do very well and your shoe may not drop!  Hoping for that!

Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)
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Jun 13, 2012 04:03 PM kltb04 wrote:

Thanks for all the input thus far - today I am just feeling very fuzzy headed and out of it and just down - may be more of a mental thing than an actual physical response?  Here's another question - I got Nuelasta after each A/C and was told I would not get them for Taxotere.  Are my counts just not expected to go down as much; input?  Thanks again.

Dx 2/17/2012, IDC, 3cm, Stage IIb, Grade 3, 1/4 nodes, ER+/PR+, HER2+Surgery 02/27/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 03/19/2012 Adriamycin, CytoxanChemotherapy 06/11/2012 Taxotere
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Jun 13, 2012 04:43 PM SpecialK wrote:

kltb - I got Nuelasta for all 6 TCH, but my MO prescribes it from the get-go.  If you experience a drop on Taxotere they can always add Neulasta back in.

Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)
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Jun 13, 2012 05:32 PM Jennt28 wrote:

With my Taxol/Herceptin my white cell count never fell, so maybe it's the same for Taxotere...

I never had neulasta for FEC either because here in Australia they don't use it unless they have to ie: if your levels fall too low THEN they use it.

Jenn

Jennt28: 3 x FEC (done!), 11x weekly Taxol (done!), 12 months Herceptin (now), 28days rads (start 26 June 2012)
Dx 12/1/2011, IDC, 2cm, Stage IIa, Grade 3, 1/1 nodes, ER+/PR+, HER2+Surgery 12/07/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)
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Jun 13, 2012 05:40 PM, edited Jun 13, 2012 10:45 PM by TonLee

I didn't get Neulasta the first tx, ended up in the hospital for FIVE DAYS osteopenic...lol, neutropenic whatever it was called!  The longest 5 days of my life.  SO BORING.

After that I just took the shot home with me and gave it to myself in the stomach the day after chemo. 

IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads
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Jun 13, 2012 05:56 PM Cowgirl13 wrote:

I was automatically given the Neulasta shots.  that's just the way it was.  It a good thing, because when my counts were so low, I had to postpone by 5th chemo by a week.  If it was bad with Neulasta, I can image what it would have been like without it.

Dx 5/28/2009, IDC, 2cm, Stage IIa, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jun 13, 2012 06:05 PM moni731 wrote:

I was also given Neulasta automatically, but ended up with grade 4 neutropenia every time (WBC counts of 0) and in the hospital. Chemo also caused anemia that has lasted to this day, but is now improving. Glad to hear that I am an anomaly and not the norm. Wouldn't wish my experience on anyone!

Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Jun 13, 2012 06:14 PM kltb04 wrote:

Ok, starting to get really worried about this - they don't even want to do labs until next TX!  I think I am going to call tomorrow and insist on labs for this go round at least. During my A/C I had labs one week and two week post TX and then again the day of the next TX.

Nuelasta was automatic with me for A/C as well.  My counts never went that low (they were below "normal" but not extremely) since I was on it - I could always count on a good week the third week of TX.  In fact, we just got back from a week long vacation.  And I really want to be able to plan another trip before school starts.

Sorry, my posts aren't always so down :(  I am just visualizing a summer of house arrest with two kids with nothing to do...

Dx 2/17/2012, IDC, 3cm, Stage IIb, Grade 3, 1/4 nodes, ER+/PR+, HER2+Surgery 02/27/2012 Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Chemotherapy 03/19/2012 Adriamycin, CytoxanChemotherapy 06/11/2012 Taxotere
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Jun 13, 2012 06:47 PM lago wrote:

kltb04 I did not get labs on my first TX but got them before the other 5. No labs for only herceptin.

I had chemo on Tuesday. I never had "bad" days but usually Wednesday I was fine. Things started to kick in on Wednesday a little. By Saturday the Big C (constipation) was gone. Heartburn would have been consistent if not for the meds. Once off steroids I had fluid retention till I took them again for the next infusion. I could go on but really the first 3 TX weren't too bad once the we figure out the proper treatment for the Big C and heartburn.After that the SE I did have were a bit more intense, lasted longer or a few new ones (taxoteres, eye twitching. My nail issues didn't start till tx 3

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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Jun 13, 2012 11:53 PM Msbelle wrote:

How soon after completing chemo did everyone start taking tamoxifen?

Dx 1/13/2012, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2+
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Jun 13, 2012 11:59 PM Kitchenella wrote:

I"ve been told I will start Tamo 4 weeks after my last TX next week.

ACX4 ( Bi weekly) THX 12 (weekly) Herceptin for a year and rads at the end of the year.
Dx 11/14/2011, IDC, 1cm, Stage IIa, Grade 3, 1/20 nodes, ER+/PR+, HER2+
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Jun 14, 2012 12:47 AM moni731 wrote:

kltb04- A/C generally causes the low counts, but usually they will run the lab before your infusion for baseline. You will figure out what days you feel well and how long after infusions that you do not want to do much. This should help you schedule something with the kids. Sometimes having a diversion helps also! Pace yourself.

Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Jun 14, 2012 08:14 AM lago wrote:

I started my ESD 1 month after chemo but I didn't do rads. My onc has her patients on rads start after rads ends. I get the feeling she doesn't like her patients to experience too many SE at once and wants to be sure what the SE is from.

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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Jun 14, 2012 08:21 AM Kelloggs wrote:

I started Tamoxifen about 6 weeks PFC

Kelly
Dx 10/18/2011, IDC, 1cm, Grade 2, 5/8 nodes, mets, ER+/PR+, HER2+Surgery 10/25/2011 Lumpectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left)Chemotherapy 12/08/2011 carboplatin, TaxotereTargeted Therapy 12/08/2011 HerceptinHormonal Therapy 05/01/2012 TamoxifenRadiation Therapy 05/01/2012 External
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Jun 14, 2012 01:55 PM Fitz33 wrote:

kitb04:  I got labs before every chemo and before every 3 wks of Herceptin.

I didn't do well on chemo at all even with a 2-month break between treatments 4 and 6.  I live in fear of a reocurrence because I don't know what they could treat me with ... I've had Tykerb, Herceptin, Taxotere and Carboplatin. 

Dx 9/14/2010, IDC, 2cm, Stage IIIa, Grade 3, 9/23 nodes, ER+/PR-, HER2+
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Jun 14, 2012 02:52 PM, edited Jun 14, 2012 02:53 PM by SpecialK

I got labs weekly while on chemo, now I get them quarterly - including CA 27/29, CBC, CMP, vitamin D, and CEA.  My MO has the same philosophy as lago's as far as when to start Tamoxifen/aromatase inhibitor.  I did not do rads and started Femara about 6 weeks after chemo ended - I was slightly delayed by a surgery to put my left expander back in - it had been out during chemo, and because of the clot risk we waited until after that surgery.
Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)
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Jun 14, 2012 05:49 PM ArleneA wrote:

I didn't start my Arimidex until I was finished with RADS.

I get blood work and thorough breast/node exam every 3 months.  SpecialK, I need to check because I don't remember the CEA and CMP on my labs.  Need to ask when I go again in July.  I am getting another Dexa before 2 years and insurance has approved it too.  My onco does the CTC blood test but some here don't believe it is accurate but I'm guessing that since I have a baseline, it is a good indicator but I really have no idea.

Dx 1/1/2011, IDC, 1cm, Stage Ia, Grade 2, 0/2 nodes, ER+/PR+, HER2+
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Jun 14, 2012 06:29 PM, edited Jun 14, 2012 06:30 PM by shore1

Msbelle, I had my last chemo 2/1/12 & started tamoxifen 2/12. My MO gave me the script at last chemo and said to start it asap.

Kltb04, I got labs before every AC and every weekly taxol. Now I just get herceptin every 3 weeks and only get labs every 4th time.

Dx 6/6/2011, IDC, 1cm, Stage I, Grade 3, 0/4 nodes, ER+/PR+, HER2+
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Jun 14, 2012 06:45 PM Moonflwr912 wrote:

My onc said to wait till after I switch to triweekly herceptin before he will prescribe my estrogen sucker. Also, I get labs weekly with each infusion, including the wekly herceptin. I have one more weekly, then go to the triweekly after that. I get a CBC, CMP, each time. If anything is off, he orders things like an iron panel or whatever. I am usually low on magnesium and have to have a bag Hung every week, even though I take six of those pills a day! Tell me ladies, ARE WE HAVING FUN YET!!!! LOL MUCH LOVE.

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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Jun 14, 2012 10:42 PM fluffqueen01 wrote:

Interesting on the allergy comments. I jave aken sulfa based drugs a million times and suddenly, the last time I had it after my implants, I broke out in hives.

And to add to that...it was tattoo Tuesday this week for me. Now, the tats look good, but my whole foob is itching like mad and slightly pink outside the outer tat edge. PS started me on a antibiotic, just in case, and an ointment. I just popped an antihistamine that will knock me out shortly.

On the Benadryl front, if you google interactions with tamoxifen, it is listed. I asked the pharmacist in my ons office and he said if you need to take it occasionally, it is probably no big deal, but not to take any of the advil or tylenol pm drugs every night.

When I started Herceptin only, the first time they gave a full dose of benadryl. Second time a half dose, and then nothing, since everything went ok. Herceptin wiped me out for a day or two. The 30 minute dose dense version also made me feel awful, so they lengthened it to 90, which helped, but I still felt crummy for a couple days after.

I think mine was mixed up each time, as I had to wait for him to get everything put together, but I can't say that for sure.

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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Jun 14, 2012 10:48 PM moni731 wrote:

SpecialK- when did you start the ca27.29 levels? How have the readings  gone? I will start this in Aug. I have read up on the results being false positive, I guess that is why so many onc's don't do them. Do you find at least some comfort in the readings or does it worry you? Thanks in advance.

Dx 2/10/2011, IDC, 3cm, Stage IIb, Grade 3, 1/2 nodes, ER+/PR+, HER2+
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Jun 15, 2012 12:51 AM, edited Jun 15, 2012 12:53 AM by vjm

MsBelle - I finish my chemo tomorrow (already had 20 rads) and my onc wants me to start Tamoxifen in one month when I return from my holidays. vjm
Dx 10/28/2011, IDC, <1cm, Stage Ia, Grade 3, 0/2 nodes, ER+/PR+, HER2+Hormonal Therapy TamoxifenSurgery 11/29/2011 Lumpectomy (Right)Surgery 12/28/2011 Lumpectomy (Right); Lymph Node Removal: Sentinel Lymph Node Dissection (Right)Radiation Therapy 03/12/2012 ExternalChemotherapy 04/13/2012 Cytoxan, TaxotereTargeted Therapy 04/13/2012 Herceptin

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