her2 actaully 3 pos, need guidance..please

[mimiflower07]

hi everyone. my name is Suzanne am 42yrs with 2 children. new to this board but am so happy to have found this one. i was dx in aug07 rt br extensive comodo gr3 with t2.5cm ,pre-m. path showed neg lymph node, clr margins, no vascularlymph involment. triple pos. Recieved bilad mast sept 25/07 with recon at same time. Now finishing recovery and will be seen by onc next 2 wks. My question (not sure what to do) what should i consider as a very pausable tx plan. Throw everything at me? should i include rad? I know hercepin with femanar(?sp) so i would like to shut down or remove my ovaries asap. Very nervous about taking Chemo!
any thought i sure could use them. I also have some arthritic changes nothing huge but do have stiffness which is my norm.
sorry ive gone on and on but help
Suzanne

[John21]

I guess maybe you are stage 1. What is you ER/PR. Her2 Fish score? You might just to do Herceptin alone. These days, I think doctors are going the quality of life direction. SInce there are clear margins, no lymph nodes, no bones? I would hope the best for you. It is true that Her2++ is driven by Hormones, and by gosh i could never say we haven't consider removing the ovaries, but see what the oncologist says. Take it a step at a time. Excessive unneeded surgery puts a strain on your body. Save it for when you need it. The only other thing is be aggressive and stay on top of it. Beware of your body and aches and pains. If something doesn't feel right, then check it out and get piece of mind. Make sure you are comfortable with your oncologist. Rememebr, their many of them out there. Don't believe you have to go the one next door. Many of the people on this site can recommend good oncologist. They are all great people from what I come to learn.

I come here to this site for my wife, to learn, vent, and just check up on things.

[Brenda_D]

It is true that Her2++ is driven by Hormones

I don't think Her2++ has much to do with Hormones. I am Her2+++, and ER- PR-.
My BC was not hormone driven.

I will have to let someone else speak to the triple positive aspect.

[mimiflower07]

thanks john and brenda.
i'm sorry we all have to be here. Some days i just don't know how to feel...i try to stay very positive and up beat but it gets to me after awhile. Especially when i watch my 2 children, like on halloween(life was so care free ...for them 9yr son & 5 yr daughter!!!

I have only just met with the onc surgeon 2 wks ago for my path report. She never mentioned staging at that point.oncogene grade 3+ strong(Polyclonal) not sure what polyclonal means.er and pr +. Extensive duct carinoma in situ, high grade with infiltrating carcinoma in 2 additional nodules of same breast. that what i know thus far. I just was wondering if they would do chemo. thanks for listening...i plan to stay as aggressive as i can.
suzanne

[BonnieR]

Hello Suzanne! It is daunting at first. We have all been there. I always advise to keep a journal to write down your questions and the doctor's answers. And, if at all possible, to have someone with you on these visits where decisions have to be considered. Also, there is time to obtain a second opinion and many people do that.
Have you been given literature that explains all the terminology?
And you should be told what Stage you are.
Keep the faith.
Bonnie

[chrisy]

hi Suzanne,
Definitely get your stage - that will suggest treatment options. You do have a target rich environment, being triple pos you have hormonals/AI's as well as Herceptin. But the main thing is to do whatever you feel is necessary to put this cancer in your PAST for good.

The decision is yours; but your onc will have a recommendation. I strongly suggest you also get a 2nd opinion. If you are hearing strong recommendations to do chemo, don't fear the chemo. It is definitely doable as many on this forum will tell you. Not fun, but doable.

Remember, the goal is to rid your body of the cancer.

Good luck with your decision - you will make the right one for you.

[Jean]

Hi Suzanne,
And welcome to a wonderful family of strong fighting sisters!
My 2 cents worth:

Concentrate on truly living and enjoying those two beautiful children.
Also know that in the short time since I was dx. 4/05 there have been
many changes in treatment with her2. You must do your research, ask questions and also get second opinions. Of course there is this wonderful group to bounce off from as most here have great experience and wisdom.

Please do not feel that bc cancer means instant doom. Yes, it is terrifying to be told you have bc, waiting for your dr. visits, waiting to start treatment etc. It is overwhelming! Know three things:

* Be informed
* Then take control
* Keep a positive attitude

We are all here for you...and YOU WILL GET through this!

Many Hugs,
Jean

[Cristina19]

Suzanne,

Are you there?

I'm relatively new to this, too. My thread is below somewhere: "Taxotere, Carboplatin, Herceptin." The women here were very helpful and informative. I've just had my 4th treatment out of 6 and couldn't do this without the help of all the "sisters."

One comment: you might want to ask your doctor about the above "coctail" of drugs (TCH) vs. AC->TH. The one thing I was concerned about was the heart-damage risk that comes with Adriamyacin (sp?) and following it with Herceptin which also has a heart-damage risk. A UCLA oncologist that I spoke to for a second opinion and who is associated with Dr. Slamon said that if I were his patient, he would have me do TCH.... which is what I finally went with.

I go in for my MUGA scan to check my heart function next week. Hopefully, all is well.

Best,
Cristina

[mimiflower07]

hi christina...sooo glad you posted your regime. After some thought with a little research i agree with your suggestion. i wrote that combo down to take with me to my onc app next week. How are you finding it Christina?
So glad to hear you are moving through. I would like to hear more from you. i wonder if i can make this suggestion ot my onc?
thanks again!!
best thoughts going out to you
suzanne

[Cristina19]

Hi Suzanne,

Good to hear from you, too! This sucks being here but the support is priceless!

I'm done with 4 out of 6 of TCH and it's going "alright." I put that in quotes because I don't want anyone to think that when I say "alright," or "okay," or "fine" that I'm just taking this breezy walk in the park. The effects of chemo are sobering. My pattern is this:

Day 1: Chemo--uneventful (but long day) as long as I have all of my premeds (anti-nausea and steroid at home and then Benadryl and Zofran in the infusion; more Benadryl before Taxotere)

Day 2: still feeling pretty okay; Neulasta shot (half dose)

Day 3: the chemo and Neulasta starts to hit but just a little worse than "okay"

Day 4, 5, 6: crappy, sicky, a little achy (but not terrible)

Day 7-10: coming out of it but thank God for Nexium and Zantac. The most persistent thing is the constant indigestion; I constantly feel sick, although less sick than the first days and at least I can "function."

Day 11-21: feel better and better, practically "normal"

My blood panel (whites, reds, platelets, etc) are all staying strong. I try to do light exercise (walking) when I can; yoga during my "good spell." Stay away from too much sugar, too much salt, too much oil; no caffeine, no alcohol. Lots of water. My heart beat is more pronounced during the first 7-10 days so I'm a little worried but it may be working hard to get all this crap out of my system.

My fingernail beds are sensitive. I'm rubbing Vitamin E and tea-tree oil on them. Tea-tree oil stinks to high heaven!

No hair (just fuzz), of course; eyebrows and lashes and other places have thinned but not gone entirely. I had one period after the first infusion and then nothing.

I take Glutamine (5 mg/am; 5 mg/pm) for the four days after chemo and neuropathy doesn't seem to be a problem (at least it doesn't persist). Taking CoQ10 for heart health, Omega 3, Calcium, and a multi.

There are some little weird things that appear and subside during the three-week cycle. I use a "natural-ish" toothpaste with baking soda and flouride, but no other harsh stuff. Keep a clean mouth and I don't have any mouth sore problems.

Email at any time!

Hang in there!
Cristina
=)

[mimiflower07]

hi christina

thanks for your info ....there was comfort in hearing how you are managing. Sounds like you are near completion then its herceptin time.
you are doing great. i will let you know what tx plan is decided. i may have more questions ...thanks so much
suzanne