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

norkdo · 07-02-2013, 03:58 PM

My two cents:
Yes to margin surgery. do not debate it. do it.
No to Nipple removal on good side. the grief over losing sexual feeling by removing both (which I did...cos i didn't even know I could keep that nipple or i would have) is huge. Even though the majority of women who have nipple sparing surgery (as did Angelina Jolie and Christina Applegate), do, in fact, end up losing all sensation there despite preventative procedures, it is her duty to try. Or she will regret it later. the loss of sex is just awful i find)
Yes to the port. I was sooooooo loathe to get the port. kicked and screamed. glad in the end. chemo eats veins.

norkdo · 07-02-2013, 04:16 PM

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.

norkdo · 07-02-2013, 04:40 PM

speak of the devil!!! (just saying to throw everything you can at it early on):"The impact of treatment in breast cancer is greatest in the early stage, before the cancer has spread to other parts of the body," said Hal Barron, M.D., chief medical officer and head, Global Product Development

This article is more relevant to your wife's stage one cancer than info on TDM1 which is strictly for stage four patients (phil's note, above)
:http://www.news-medical.net/news/201...st-cancer.aspx

vlcarr · 07-02-2013, 07:24 PM

I can only add that I did TCH and am still here

. As many wise ones told me on this board, it's not easy but doable. I have learned some people tolerate it better than others. The issues I deal with are not related to TCH. I'm sure you will make the choice that is right for you. Wishing you the very best outcome.

Jean · 07-02-2013, 09:50 PM

Hi Ben,
I responded on another thread you had posted on. On this thread you had details to Rachel's dx.
The clear margins are a must and now that part is already decided and behind both of you. You have to start thinking of this disease as a huge elephant...how do you eat an elephant?
One bite at a time. First of all you and Rachel have many important decisions to make. So, rest is important so you are clear headed. The stress of being newly dx. is horrific. So take it one step at a time. I was stage 1, also with node negative, very small tumor. Did I feel that I was safer than an women who had a larger tumor? NO I did not. The thought was that while catching this nasty disease early is a benefit - it meant very little to me. As many women before me had recurred - the first two yrs. are very important. (many of them were not given herceptin). I had TCH and it is doable. You and Rachel have to be prepared (mentally) for this fight. Yes Ben it is a fight. You both will fight to get Rachel to NED. (No Evidence of disease. )
Don't be more afraid of the treatment - than the disease itself.
I had asked Dr. Salmon (please take the time to look him up on the internet) as he is the dr. who researched and gave us herceptin. I had asked Dr. Salmon how many cancer (t cells) in a small 6MM tumor like mine. 6mm tumor is about the size of 1/2 of a green pea. His response was millions. Now consider it only takes one rouge cell. That answers all thoughts in my mind of treatment do or don't. Can you believe Ben that only a short time ago early stage women like me and your wife were not approved for TCH ? Sounds archaic doesn't it. That if you were stage 1 early dx. you were not permitted to have treatment. The theory was you didn't need it. This is a nasty aggressive disease. The unknown is the worst part of this journey. I can share and tell you that it is not as bad as you will imagine it. I did work while in treatments. But as I said I prepared for it. I would always have my treatments on a Thurs.
My Neulastra shot was the next day on Friday. Friday, day one after trt, I always felt fine. Sat./Sun. would feel tired, flu like symptoms.

It is obvious that you are a loving and supportive husband. That is going to help Rachel so much. I always said, I just didn't get breast cancer - my husband & son also did. The entire family is effected. I was fortunate that my husband and son were supportive & loving.

Once Rachel's surgery is behind her you will feel more secure.
Please feel free to reach out with any questions.
Lets us know how her surgery goes.
Saying prayers for strength for both of you.
Kind Regards,
Jean

Andrea Barnett Budin · 07-03-2013, 12:54 AM

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

LeahM · 07-03-2013, 05:30 AM

Hi Ben,
You have received some wonderful advice here, there isn't much I can add to it....
So I will just add my prayers to the mix. I'm glad Rachel has you.
All The Best
Leah

Jackie07 · 07-05-2013, 06:22 PM

It seems to me your wife's oncologist is following standard treatment guidelines. Radiation of the area could affect vital organs (heart/lung/...) beneath it. It's been six years since my double mastectomy. I did not 'preserve' anything. As a matter of fact, after the BRCA gene test and another family member going through HNPCC-related cancer treatment, I did away with my ovaries and uterus as well.

My husband and I have found ways to enjoy our intimacy more than ever before...

And I've been feeling healthier more than ever before ...

CoolBreeze · 07-05-2013, 08:21 PM

Hi there.

I don't normally do this, but I want to recommend my blog, http://www.butdoctorihatepink.com. If you go back to the first pages, I describe my entire experience from mastectomy through TCH (and more). She may be interested in reading the TCH sections - I started that chemo December 2009. I did the same initial treatment as your wife has been proposed, so she will get some insight as to what to expect from one woman's perspective.

I am a few years past TCH now but I didn't find it too difficult a regimen. I guess I should go back and read it to find out if I really felt that way at the time.

I think TCH is standard of care so I'd stick with that, it really isn't that awful and HER2+ is sneaky, as I subsequently found out. (I am now metastatic).

I did not have a port and I'm glad I didn't. I have strong veins and it was easy to access me. I have since had a port placed and dislike it very much. I am glad I made the decision to do my first year without a port. Most people feel differently than I do but one thing is I am very thin and I think a port is a different experience when you are super skinny. It sticks out about 2 inches from my skin and snags on stuff and just gets in the way and hurts. I've had more toxic chemos since that made it a necessity so I had no choice.

That's a minor thing. The question about the surgery - make sure you research the odds of contralateral breast cancer. It's extremely rare and because of that, I did a unimastectomy. While cancer has appeared in other parts of me, it has not in my other breast. I would stay away from unnecessary surgery myself, but there is also a mental health aspect to it. Some people just feel mentally they need to remove even the smallest risk.

I don't know what is left on your wife so I am just going to tell you about me. I am also glad that I still have one breast as I have had nothing but back and shoulder problems since the mastectomy. I also have phantom itching in the mx side that has driven me crazy. I also am glad I have some feeling in one side as the mx side has been numb for four years. So leaving one breast has been a good decision although esthetically it is less pleasing.

I am just sharing my experiences and thoughts. Everybody will come to their own ideas and conclusions based on their own needs and the information they gather. There is no right or wrong answers, unfortunately, there are only shades of grey and you will do the thing that you find the best based on what you know.

It is good that she is early stage and I am sure that everything you do will be successful and she will stay that way.

Best of luck to you all.

Kkmom · 07-05-2013, 08:43 PM

Ben,
First of all, what a great husband and partner for your wife in this journey. The regimen you just outlined sounds identical to what I just finished back on May 22. The only difference I had a lumpectomy back in December 2012. My cancer was estrogen +/progesterone + and Her2 neu positive. I have the port (great device - even though I cried the entire time on the day I had it placed), chemo - TCH and I am now about halfway through with radiation.
I did lose all of my hair (but is now slowly growing back), my fingernails are funky looking and yes - as my nurse put it, "TCH is not the hardest chemo drug, but it will kick your butt" - she was 100% correct and then some, but as so many of us have - I made it through.
Even though it is overwhelming right now, you seem to be sorting it out and will be well informed to make the best decision. This discussion board is also a wealth of information and a source of comfort.

William B · 07-08-2013, 04:34 PM

Benjamin please know that my thoughts are with you and your wonderful wife Rachel. You have definitely come to the right place. Right now you have a lot to adsorb and I know it can be quite daunting. But the fact that you’re on this site tells me that you’re up to the task. Try to make all her appointments take notes and ask lots of questions. I live in Maryland please don’t hesitate to ask if there is anything I can do for you.

norkdo · 07-09-2013, 07:14 AM

I have bookmarked this thread as I am so proud of all my sisters on this page. My heart is full to bursting when I read with pride the advice and support on here. Wow, wow, wow to jean and coolbreeze, jackie07, and andi and all here.

starwishn2 · 07-09-2013, 09:41 PM

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

linn65 · 07-10-2013, 07:37 AM

Ben,

It is just beginning of your journey so be ready for the ride of your life!!

Because my tumors were large in size, in my lymph nodes bases on physical exam my treatment was a little unique it seems. I had TCH before surgery to see how it would effect the cancer, so I was a walking laboratory which BC doctor thought how cool!! At the time I did not think anything was cool about BC.

I was told my a couple doctors sometimes people with for example stage 1 cancer do not hit the cancer hard because it isn't as aggressive. The doctor told me because we have been just as aggressive as the cancer she felt better results in the long run for me vs. a less aggressive cancer and less aggressive treatment.

I say you want the BEST long term results for you and your wife so hit it as hard as you can with your treatments!!

I have 1 son and he is the love of my life and if it was his life in my hands I would do all treatments available to him which will SUCK this year but hopefully pay off for the next 20 years.

Side effects are temporary cancer can kill you! I say TCH would be the best way to treat the cancer and then if anything would happen you will have no regrets in thinking I jsut did the TH treatment I should have done the TCH.

Hope this all makes sense!! And I am so sorry for the journey you are about ready to go on. Soak up every good day you have ahead and if it's a rough day the next day remind yourself its a new day!!

msmanuf · 07-10-2013, 01:09 PM

My question is I had 6 mo. of TCH and 6 mo. of Herpecin. My oncologist said the two totaled would count as having Herpecin 1 yr. total. Is this correct?

linn65 · 07-10-2013, 01:13 PM

For me yes the two together will equal a year!

bmorr7 · 07-10-2013, 01:27 PM

Hi everyone,

Some good news - Rachel went back in last Friday for another operation to get clear margins. There was DCIS at the lateral margin on the right mastectomy so Dr. Chang (UCLA) went back in and clean that margin out and found no abnormal cells. So she has cleared us to move onto the next stage of Rachel's care - chemo.

The plan is now to start chemo Monday July 22 and our oncologist is recommending TCH which sounds like the protocol used by most of the oncologists at UCLA including Dr. Slamon. I've seen that other recommend PH (including Dr. Edith Perez at Mayo) as a similar protocol with less side effects but our team here says TCH is the first choice. Rachel would get six rounds of TCH with the Herceptin continuing for a full year.

We're also expecting to hear about the BRCA results tomorrow ... fingers crossed.

Wondering what others think about the chemo regimens and whether TCH is the best first option. Our oncologist says it's safer than the older regimen (that including Adriamycin) but still very effective.

So much to digest ...

Ben

Bunty · 07-11-2013, 01:32 AM

Good news Ben! TCH is also the usual protocol given in Australia as well, and gee, I wish it had been available when I was first diagnosed nearly 13 years ago. The stats coming through now on this combo of TCH are very good in terms of survival after 8 years. There's been a number of members here who have recently celebrated 8 years clear, and many were on the TCH regime when first diagnosed.
Best wishes
Marie

CoolBreeze · 07-11-2013, 03:04 PM

I think TCH is standard of care now; it is easier on the heart that an adriamycin and herceptin combo. Your wife should do well on it and like many here say, it is quite do-able. To be honest, I had very few side effects on it. I worked, went on field trips with my kid and did my normal routine. Towards the end I was pretty tired and achy but nothing terrible. I drove myself to every appointment, and continue to do so. It is not like the movies show, that's for sure; I wasn't puking and sick. I am in the norm although of course, there are always exceptions.

The worst part of the treatment was the nasty taste changes. She'll have to find stuff she likes to eat on it - I found I could still taste sugar so I became a cupcake-aholic when I'd never eaten sweets or cake in my life before.

Lemon drops and jolly ranchers are also helpful. Constipation is also the other main side effect so she'll need to watch for that - get Senekot S which has a motility enhancer as well as stool softener. Of course, she should drink lots of water and a high fiber diet will help with the constipation. She is very unlikely to be nauseated but they will give her anti-nausea drugs and I recommend she take them the first few days after chemo until she knows she'll be okay. To be honest, I have been on seven different chemos now and only one even made me slightly sick, and that was Gemzar and she'll probably never have to take that one <knock wood>.

Oh, and I'm not a big natural supplement type of person but I did find that l-glutamine helped with neuropathy. If she starts to get that tingling in her fingers and toes, it's worth looking into. There have been studies done at UCLA that shows it can help, plus it's good for your gastro tract. You dissolve the powder in cold water and take it a few times a day, on the day of chemo and a couple days after. Like I said, I've been on a lot of chemos and I did start to get neuropathy but it went away after I tried the l-glutamine. Of course, ask your oncologist before you take anything.

Good luck to your wife. I think she's going to find it much easier than she expects. Losing your hair is the most difficult part but it grows back as soon as chemo is over (herceptin doesn't affect hair) and it'll be over before you all know it.

*hugs*

bmorr7 · 07-21-2013, 05:10 PM

Hi everyone,

Rachel starts chemo tomorrow (six rounds of TCH). She's a bit nervous but feeling strong. Her oncologist prescribed Decadron 4 mg twice today and twice the day after chemo. Zyrtec daily and Neulasta to be given Tuesday. We're doing a lot of praying and appreciate others who are doing likewise.

Best

Ben