My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)

[bmorr7]

Hi everyone,

Thank you so much for all the helpful advice that you've given Rachel. We're heading back to the hospital on Friday so that our surgeon can try to get clearn margins at the deep and side margins. She's confident that she'll be able to do that.

We met again with our oncologist and he recommendeds the TCH regimen (Docetaxel, Carboplatin, Herceptin) for her HER-2 positive, ER positive, node negative treatment. I just spoke with another oncologist who strongly recommended Paclitaxel/Herceptin. She said that the PH regimen is much less toxic. She also mentioned that some patient go on the TH regimen and leave out the Carboplatin.

Do others have experience with TCH, PH, or the TH regimens. We obviously want a very effective regimen but also one with a lower rate of side effects (short-term and long-term).

Thanks,

Ben

[norkdo]

re radiation or chemo: I quote Jill and others above as they said the right thing: This is Her2...throw everything at it you can up front

Please tell your wife that this throwing everything you can up front at it will ease her mind, if god forbid, later, she has progression of the cancer. It's about her (and you, cos this is happening to you too) having peace of mind if/when it progresses. "I did absolutely everything suggested." That is the most important thing.

I say "ditto" when others send you massive love for your conscientious caretaking of your wife. My husband was the opposite, unfortunately. I told the nurses, for example, that I would have no problem self injecting the neulastin but to my surprise it hurt so bad that I only did it once. My husband works out of town and only returns three days a week. Nobody knew I couldn't self inject. I was too embarrassed to tell anyone i was not doing it. I ended up in hospital for almost a week as a result. So that is great that a person in her house, her spouse, can inject her.


Lastly, a client of mine with a b.c. diagnosis has a good husband like you are. He really impressed me when he said this: "Everyone talks to her with great advice and love and I am so happy about that. But.....this is happening to me too! This is my world, my wife, and I just couldn't go on if we get this wrong." I will never forget that. This is happening to you. As many above are trying to say to you.....we are here for you, too. Any time of day or night please tell us how you are doing.

[Andrea Barnett Budin]

All here have given you excellent advice, Ben. Becky, Nora, Jean, and every one who has posted honestly.

First -- Dennis Slamon (typo Salmon cause I know Jean knows well). I've met him in an exam room in Calif. My husband talked with him from NY when we weren't even patients. He is open, extraordinary and passionate about his work. If not for his tenacity, many would have died. Probably me included. I've hugged this 6"3" man (standing on the step of the exam table in short heels -- face to face) and I've thanked him for my life!

My 9 cm tumor was lobular vs usual ductal. Highly aggressive. Didn't know about HER2 or Herceptin in '95 when first dx. The standard of care back then was Adriamycin 4 and CMF (a combo) x 8. Followed by no more scans. Ever. Just every 3 mnth blood work, which was how "I" found my metastasis in '98. My tumor markers were still normal, so we learned we can't depend on TMs w/me.

An important lesson I've learned is that cancer is not our worst enemy. FEAR IS. Not easy, but let go of the fear. Sure, it's scary as all get out, but it's a process. One step at a time. Surrounded by great advisers, remember YOU are a part of the Team. We are talking about Rachel's life -- she is the one to ultimately make decisions, with your help and the wisdom of the experts along with Sisters who carry much experiential and gleaned insights. You learn a lot from the chemo nurses and the chemo patients over and above what the docs have to offer.

Fear and faith cannot occupy the same space. So I proceeded with love and KNEW I would survive despite all the spooky statistics. I BELIEVED because of this powerful Knowing I carried from my gut. Chemotherapy was my ally. My life line pulling me through rough waters. I did not hate it. I do not hate cancer. It is a stupid malfunction of the body. Yes, sly and evasive, highly aggressive -- just keep one step in front of it. Proceed with certainty that you are on the right path. If signs pop up that prove otherwise (w/the next set of scans and/or blood work), alter course. Move to Plan B.

I am a TH girl. T knocked me for a loop. I took massive supplements from an integrative oncologist in Manhattan that I believe helped save me. A part of the recipe for prevailing!

I envisioned myself far far into the future in vivid detail at a specific family occasion. I saw myself there, joyful and surrounded by those who are my beloveds. And I lived that dream 14 years later.

Diagnosed in '95 I did not have the advantage of Herceptin, or even the knowledge then of its existence. When I recurred in '98 as I've mentioned in a previous post, I went in search of Herceptin and remained on Herceptin alone for 10 yrs.

I had 3 separate independent radiologists read my scans after 8 mnths when I could no longer tolerate Taxotere. I never give up, but my body couldn't handle it, and that was obvious to my main onc who believed at that point there was no reason not to believe that H could keep me STABLE (NED). And so it came to be.

I've been STABLE since '99 (after 9 mnths of Taxotere and 10 yrs of H). I have now been off of H for 5 yrs. Still here. Almost 20 yrs since original dx.

A power port in the bra line is what I'd do knowing all I do at this point. My veins are not easily accessed. They're thin and roll over, collapse, blow out. The port was a piece of cake. 3 yrs ago I had my 12 year old port removed.

I absolutely agree that those closest to us actually go through the experience with us. My husband (now married 47 yrs) always liked to make things right for me in life. Fix things. If I complained about another day of rain, just saying, he'd respond, Well, there's nothing I can do about that. I wasn't hoping he could. Just needed to vent a bit.

So when I was dx, he was devastated. He felt so helpless. He did the laundry when I was too weak, he did the marketing, ran the errands, dealt with the insurance company SO I COULD FOCUS ON HEALING -- and he was happy to be able to contribute in whatever way he could. He came to every doc appt, every test, every chemo appt (since '95). It was me assuring him that I was going to be fine. He tried to believe that, but the cynic in him too often won out. I just kept smiling (yes I was joyful and serene even midst chem) cause I KNEW from my core that -- in the end the heroine lives! I'd had a dream!!

Many offered up prayers for me, lit candles, envisioned me in a radiant white Light -- in accordance with their beliefs. I accepted it along with all the love offered readily. I believed all that positive energy stirred up miraculous things.

When I first bought books all about breast cancer (mostly written by docs) I was appalled at the statistics. I closed those books. Gave them to my husband/lawyer who was hungry for such hardcore details, and I turned to the psychology section in the book stores, where I found books about spirituality and healing, outliving cancer and positivity.

Less than 15% survive what I had? Horrifying! But -- who are those 15 people who survive? I would be just like them. Shut out the fear which can eat away at your Soul and corrode your insides. I would be an example for my daughters to see how to face adversity, and remember me as starring down cancer with grace and conviction. I would be like an Olympic Gold Medalist, see the goal, work toward the goal, dream the goal, live the goal.

I would use the energy of love, compassion, generosity, kindness, caring for others, forgiveness and genuine gratitude for the many blessings I had. My mother with Alzheimers quickly taught me to humbly value the gifts we all take for granted. I felt lucky! Young, handsome, robust and successful Christopher Reeve had just fallen off his horse and was paralyzed from the neck down. Couldn't breathe on his own to speak.

I could walk and talk, feed and bathe myself. I was blessed. I was grateful for these gifts, the gift of my wonderful family, my supportive husband who took on our battle as his own, for my daughters...

Every single day I talk to my body, believing in the mindbody connection since the '70s and living it a few x personally in the '80s. I read everything I could get my hands back then. I watched PBS specials about prestigious universities and hospitals that were conducting studies about the link. So from day 1 of dx I instructed my body, about 5 x a day, every day, till this very day -- HEALTHY AND WELL. NO MORE CANCER.

I KNOW that the body hears everything we think, say or whisper. Its job is to follow instructions it receives from us. So I was explicit in my Expectations and Intentions. I also believe the Universe hears everything we think, say or whisper. And it too responds IN KIND. Positivity begets more positivity. Whereas negativity just draws more of the same to our lives.

So we are incredibly EMPOWERED. We must KNOW this and embrace it, use it for our own wellness.

Rachel and Benjamin (such strong names!!) we are all with you now on your journey. We're invested in you both. So please keep us informed as you go along. We've all been there and are here to share and help one another. In Life, we're here to learn to love, to grow and evolve and become better than we were yesterday and to help one another.

My life was enriched by this unwanted reality, I must say. I am more than I ever was. Took a path I'd never dreamed of setting foot on, and I think you'll come to know what I mean by all this odd talk.

Stay strong for one another. Hold on to one another. Let your love bring you joy and peace. 2 heads are so much better at getting through this than 1...!! (And God blesses the caregivers!)

Love,

Andi

[starwishn2]

Hi Ben~
I had TCH (finished T&C in Dec). Taxotere was a lot harder on me than the Carboplatin. I am still having Herceptin until August 15 - that will be 17 treatments. I had a double mastectomy and did not require radiation. I also have a port - which I have been very grateful to have. Previously, (before the port) when I have had infusions, the nurses have to run the drug slowly as the drugs were so hard on my veins. The port makes it much easier. People have told me that can't even see it - and at this point it wouldn't matter to me if they could. Regarding side effects - each person is so different in how they handle each drug. My doc told me that I had every "weird" side effect that Taxotere could offer. But there are people on this forum that had very few side effects from Taxotere. I did work full time (other than a day or two following my infusion). I would get a Neulasta shot the day following chemo. My oncologist recommended taking an Aleve and a Claritin at the time of the shot. I didn't have the deep aches that many have had from Neulasta.

Sadly, this isn't a journey that any of us wanted to travel BUT you and your wife will get through it. My husband has been the greatest support for me this past year. Your support will mean so much to your wife (I'm sure it already does). Best of luck to both of you.

Jeri