Topic: TRIPLE POSITIVE GROUP

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

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM by TonLee

Posted on: Jan 31, 2011 07:30AM - edited Dec 10, 2012 08:55AM 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 1, 2011 10:28AM TonLee wrote:

Welcome AlaskaAngel!  I see from your tag you chose to skip Herceptin and you are 10 years out!!  Amazing.  I'm sure you've told the story a hundred times on this board, would you care to make it 101 as to why you chose to skip Herceptin?  Was it offered at the time?  Details!!  Lol

 MMM5 welcome!  Do you celebrate every year?  Do you think that's important to do?  I plan on living a long time and any reason to celebrate...well, heh, I'm on board.

LL welcome, so glad you are feeling well!  I admit I don't know a lot about Tam or Arm, I am researching as I go, step by step.  I've run across literature suggesting Boniva (Sally Fields is the spokesperson for it) not only rebuilds bone density but early studies indicate it protects against bone cancer.  That's all I've read about it though, so haven't really fleshed it all out.

Sunflower the flax seed ‘should' be fresh, ground (a coffee grinder works great) and eaten within 20 minutes (turns bitter after that) to be most beneficial.  I have several studies on flax seed and how it should be consumed...though at the moment I can't tell you where they are!  I read about it a couple years ago when I wanted to "do something" extra for my health.  But you can go to google scholar and read about it.

Sara I am 42 and thinking about a ovarian ablation.  I have ALWAYS had problems with my periods.  In fact, I would only have two a year so I went on birth control pills for 20 years to force my body to have a monthly cycle.  Now I wonder if maybe my body knew estrogen would grow cancer and so limited it.  I had a really heavy bad period starting the first day of treatment (TMI..I know) for 10 days...I became anemic (still am) but haven't had one since. 

Don't you hate the "wait for symptoms" reply?  I hate it because a single scan can literally save your life, or at least years of it.

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 1, 2011 10:32AM TonLee wrote:

Blondie I think I'm going to research each of those drugs more in depth and decide which one will hurt me less.  I don't like the idea of losing bone density. 

Nora you are one treatment ahead of me.  I've been pretty good so far.  No down time just this annoying bloody nose.  But honestly I am dreading #4.  An amazing number of women on this protocol have told me for whatever reason #4 is the worst.  I'm probably mentally setting it up to be...but plan on pushing through. 

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 1, 2011 10:41AM lago wrote:

pejkug3 The one good thing about triple + is there are many different treatments that we respond to (radiation, surgery, herceptin, chemo, als or tamoxifen). If you get herceptin you will get chemo. You might get few rounds (like 4 tx of THC instead of 6 tx). From my own personal experience it would have been a lot more duable to stop at #4.

As far a weight. It's a real tough battle once you have too much and you've had it for most of your life. Try as  hard as you can to get that weight off. Your doctors should be sending you to a nutritionist and someone who can help with an excercise regiment. I'm sure you read the link I posted on the 1st page regarding keeping off the extra weight to reduce recurrance. The oncologist quoted is my oncologist. She is top notch. It's tough but take it slow. It won't happen overnight. It will take at least 1 year to lose 100lbs. I know you can do it this time. I saw my husband lose 60. It's hard work!

mmm5 3 years!!! another way to go girl!

sunflower71 check out this article about Flaxseed. It may reduce recurranced too, well at least it does in mice.  http://www.mskcc.org/mskcc/html/69220.cfm  They are currently doing a study too comparing als to flaxseed:  http://clinicaltrials.gov/ct2/show/NCT00612560

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 1, 2011 10:43AM Smile_On wrote:

Glad to know there are so many +++ gals on this forum. (I always feel weird saying that--hopefully everyone knows I'm not glad we all have breast cancer, just glad we found and can support each other.)

Called my onc's office yesterday and started Tamoxifen this morning.  5 year countdown started-- 4 years, 364 days to go!

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 1, 2011 10:44AM Omaz wrote:

smile - Did your doctor say anything about Her2+ and tam?  The cross-talk concern?
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Feb 1, 2011 10:56AM nora_az wrote:

Hi TonLee

So far number 4 has been a bit rougher than normal. I know nothing is TMI between us girls but I am having serious bouts of abdominal cramping intermixed with constipation/diarrhea this morning and an overall feeling of YUCK.

I think it's about time to take something for it, I just cant stand being knocked out all day long. Yes, I'm in the "poor me" mode this morning. Thing of it is, there are many in here in the same damn boat as me. Time to start paddling! 

Have a good morning everyone

DIEP with nipple sparing mastectomy on 10/13/10 TCH started 11/26/10 Anastrozole started 4/7/11 Hysterectomy/ooph and VATS (lung) surgery 5/22/12 diagnosis Coccidioidomycosis, not metastasis to the lungs as they thought. Yeahhh Dx 9/3/2010, IDC, 1cm, Stage IIA, Grade 3, 2/17 nodes, ER+/PR+, HER2+
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Feb 1, 2011 11:07AM Smile_On wrote:

No, I met with him Jan 20 and he told me to go on it in Feb. before I had heard about the cross-talk here.  I'm interested to hear what others find out.  I go in for Herceptin the 10th, but I don't see my onc again until March.  Now that I'm done with chemo I only see him every 3 months.  I do know that if I come out of chemopause and start having my period again I will be put back into a chemically induced menapouse.  I don't quite understand all of the cross-talk concern, I guess I have some more researching to do.  I think my onc figures it is better to try something that may show benefits even if it might be more resistant for me b/c of Her2.

I'm reading this article right now, but it is pretty intense.  Maybe somebody else can summarize the cross-talk concern for me.

http://annonc.oxfordjournals.org/content/14/12/1697.full

Dx 5/21/2010, IDC, 2cm, Stage IIB, Grade 3, 1/18 nodes, ER+/PR+, HER2+
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Feb 1, 2011 11:10AM kim40 wrote:

Triple Positive girl here also!

D/x in January 2009 - High ER/PR and HER2+++ with lots of nodes!

I finished Herceptin in July 2010 and I have been feeling great since then. 

I just hope that I stay that way!

Kim "I Run for Life" - Melissa Ethridge Dx 1/6/2009, IDC, 5cm, Stage IIIC, Grade 3, 14/19 nodes, ER+/PR+, HER2+
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Feb 1, 2011 11:23AM Omaz wrote:

nora - number 4 was a bear!  Hang in there.  Sometimes I put cold packs on my belly. 

Smile - I'll check the article out this evening.  Thx

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Feb 1, 2011 11:33AM TonLee wrote:

Smile on...this study is 8 years old and basically  says.....

Taken together the evidence suggests that targeted non-chemotherapeutic combinations of trastuzumab with hormonal therapy, which are currently being studied in large-scale clinical trials, represent the future of cancer therapy, allowing the individualisation of treatment based on tumour characteristics.

This supports getting both Herceptin and Tamox.

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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