new to BC

[SuePer]

I have just had a mastectomy and reconstruction, this is my third week from surgery. I have neg margins, neg lymph nodes, HER2 +, ER+, and the chemo routine they are going to start in 3 wks is Taxotere & Carboplatin, every 3 wks for 18 wks, and Herceptin for a year every 3 wks.

Has anyone here taken these drugs? These are instead of the AD & CH combo deal. What are the side effects of Herceptin ?

thanks for the info
Sue

[DonnaD]

Hi Sue,
Welcome to the board. I am sorry we had to meet here but you will find this site a wealth of information, support and comfort. We are all sisters here.

As you can see from my info I did not have the same treatment plan you will be on. But I am doing Herceptin for a year. I am down to 6 more. Side effects are next to nothing for me. I am trying to see if I have headaches the day after treatment. I guess if I have to think about it they aren't much. But everyone is different. You may want to search this site I am sure there is a thread here with many posts.

Your first dose of Herceptin will be a long one, mine was given over an hour and a half. Now it is just a half an hour and I am on my way.

Good luck sister.
Donna

[Mary Anne in TX]

Hi Sue!
Welcome! Wish you didn't have to be here, but glad you found the best place on the planet when you need to!
I had taxotere & adriamycin and then taxol, carboplatin, and herceptin! I found the taxotere tough, but doable and I found the taxol, carbo, and herceptin doable! They will take a while the first time to avoid a reaction. They kept me slow because I had a reaction, but I did well. I took my meds to keep the nausea and pains away and that really helped tons!
Ask lots of questions and get help when you need it!
Best wishes. This is just temporary and your tomorrows are worth doing it for!
mary anne

[Believe51]

Welcome SuePer, it is 'super' that you have found this site for we are one very special family. I am sorry we have to meet like this but so happy there is somewhere we can call home. There is a post concerning the drugs that you can read up on, I will pull it up so you can read them at your leisure. Please feel safe and loved here, ask whatever you need to, and say whatever you wish to get out (either happy or sad, scared or concerned). We are all very supportive, loving and unique. We are like a stray cat=feed us once and we will love ya forever!! LOL. Yes SuePer, we are here to help one another and I could not think of a better place to be. As I have said to other new members, you have just made a very large step towards your journey with breast cancer. May we be able to be your support and friends!! Love and prayers are going out to you and thank you for letting us follow your journey with you.>>Believe51

[CLTann]

Hi Sue-per,

Please allow me to add my personal welcome to the very nice group of sisters in this special community. I am a little different from others since I elected not to go through chemo and radiation. In spite of the difference, we are otherwise caring for each other and respecting the option others chose. There are many "experts" here. If you have any question, just ask. I can assure you that you will find more understandable answers than what you get from medical professionals.

[dhealey]

Welcome to our club. Sorry you had to join, but none of us are here by choice. This is a wonderful site full of women like yourself with a wealth of knowledge and compassion. I took the A/C and taxol and now am on herceptin and aromasin ( switched from arimidex due to joint pain). I can say I have had no side effects from the herceptin except maybe fatigue, but I am still working and going with my daily activities. I will finish in Jan. 2008. As you can see from my bio I was diagnoised about a year ago and even though I thought it was a long year, it has flown by, treatments and all. Best of luck to you on your journey and again welcome.

[Chelee]

Welcome Sue, As the others have said, sorry you had to join us under these circumstances. But you being her2 you have found the best bunch of women & men to help answer your questions.

I did Taxotere, carbpotin & herceptin. (TCH) This is a good chemo combination and isn't as hard on the body as "AC". Nothing is easy...but TCH is very doable. I think one of the worse things for me was the "trash mouth" I had. Every thing tastes terrible. You will get a little achy at times and can feel pretty tired...but its not as bad as "AC". Most likely you will lose your hair with TCH. I lost mine I believe on day 17. So being prepared ahead of time and get your wig or whatever you choose to use. It usually the 3rd day after your infusion that it will hit you. The first two days aren't bad. Of course you will be tired and fatigued through some of it. But believe me....you will have many good days. Heck, some people do great on this combo and even continue to work. Amazes me. Everyone reacts differently so no one can say for sure how it will affect you. But your ahead of the game asking questions now. As to the side affects of herceptin...its not too bad. Its a piece of cake compared to the other drugs. It can make you a little tired at first. Plus a slight annoying runny nose that can drive you nuts. Plus it can cause the inside of your nose to crust up and hurt if you don't stay on top of it. Some women get a slight headache now and then with herceptin. But over all it really isn't that bad. You will have to have a MUGA or ECHO to check your heart every 3 months. But your oncologist has probably explained that to you?

You will get alot of help here...you've come to the right place. In fact check out the top of the board and look for the "search" box and type in "TCH", and do a search on herceptin and you will get LOTS of information on those two topic's. Again, welcome...and know we are all here for you.

Chelee

[BonnieR]

SurPer, let me add my welcome. You can see by my signature that we have some things in common. But at the same time each of us is different. It is almost impossible to answer your question since everyone responds to treatment differently. I found it helpful to read the professional literature that I was given so to have a baseline for my questions and concerns when I visit here. I was given alot of books on breast cancer and treatments to help me get an understanding of the process. Then I could ask about specific issues here as they came up. I learned here the practical things my oncologist didn't tell me. Like it is wise to have dental cleaning done BEFORE starting chemo. Or to stock up on easy to prepare foods and things like liquid supplements (Ensure) at home. And to ask for Compazine ahead of time just in case you feel nausea afterwards. Lots of hints like that. Or to wear comfortable clothes for treatment cause it takes all day at first. And can get chilly. Bring things to read and listen to. And ask your oncologist and staff your questions. Have a notebook so you can write your questions and the answers. Even BETTER, always have someone with you who can listen and speak up.
And ask us as things occur to you. Cruise around this board and you will probably find threads that already address some of your questions...
Sorry you had to come here but glad you found us. I am relatively new but it has been a blessing.....

[Jean]

Hi Sue,
I am sorry that you hae been dx. with bc. But as everyone has mentioned
you have found the very best information site and besides the information
many new friends.

I had the same treatment as you. You will find it will not be as bad as you may be thinking. First of all you will want to be a bit more careful
as far as exposing yourself to people who have colds etc. Your inmune
system will be lowered during treatment. I would also suggest not to have your nails professional done during chemo. The point is to keep yourself away from any type of possible infections etc. Have your teeth
cleaned and any dental work prior to treatment. You can expect that about two days after your treatment to feel some side effects. Mostly
you will feel like you are coming down with a flu. This could last two days
and then you will begin to feel better. Make sure to take all nauesa meds even if you feel you don't need them. You may also have some heartburn
from the chemo. I took over the counter Prosalac, once again stay on the medication so nothing takes hold. Herceptin is rather easy, I did experience what we call the crusty nose. Your nose will run and then dry up, for this problem I would use neosporin cream inside my nose. Some of the gals use a nasal spray with saline. It is important to make your meals
count and eat protein. Small meals more often, I found yogurt to be a
good source in between meals. It is important to keep drinking fluids.
I realize how frightening this all is but please know your not alone.
Just reach out to me if you have any additional questions.
All good wishes to you.
Jean

[SuePer]

Thank you so much for the support, I have been through lots of tragidy in my life, more than one person deserves, but this takes the cake. My Onc. put me on Effexor for hot flashes and depression, my emotions were all over the map. I had the tram flap reconstruction, where they take the belly fat and place it up into the breast cavity, the muscles are still attached in order to keep blood flow. It was very comforting to wake up with a boob, even though I had lots of pain, it was worth it. It also is a tummy tuck because I have an inscision from one hip to the other where they took the tummy fat.

I'm so scared about the side effects of this chemo, I swore I would never put this crap into my body, but when push comes to shuve, we don't have much of a choice do we.

thanks Sue

[chrisy]

Hey, sueper dooper,
You specifically ask about Herceptin side effects. Most people find Herceptin a very easy drug, especially after a few cycles of the heavier chemo. You will do fine.

[BonnieR]

SuePer, we all were where you are now. And getting through it. I was terrified of the side effects but am finding it all "doable" although not a walk in the park. In terms of any immediate side effects during treatment, they watch you carefully and adjust dosages if necessary... I dread the several bad days I have after treatment but I know they will pass and I am putting this stuff in my body temporarily to kill something even worse. They make my body have alot of aches and pains. But, again, there are drugs for relief of various symptoms. And DO take what is suggested. And ask for what you need.
The psychologist at my cancer center told me that as soon as I had my first treatment I would feel like a big balloon of anxiety had been popped. And that is true. The anticipation is terrible. And then you are just "doing" it. And we are all doing it with you......

[Bev]

Hi Sue, Welcome. I guess the chemo vs no chemo is kind of like gambling. You don't know what side effects you'll get and you don't know if you'll remain disease free. I was too chicken not to do chemo.

Did Ac/TH. It wasn't painful or nauseating, more out of body. The premeds kept you in another zone. Bad tastes and no hair thing is annoying. Do not hesitate to hit the search button above to get input about meds and I believe the home page has links to treatments, etc.

For me the emotional was harder than the physical. Everyone is different so you could have something physical happen but it's not a given.

Best of luck with treatment. Bev

[tousled1]

SuePer,

Welcome to the board. My word of advise is to take your premeds as directed and drink plenty of fluids. With Taxatore you can expect to lose your hair and possibly develop neuropathy. They will keep a close watch on the blood counts - both red and white - to make sure they don't drop too low. If they begin to drop you will receive Neulasta for the white cells and Procrit or Arnasap for the red. The white cell booster can cause some bone pain which will pass. Herceptin you shouldn't have any side effects other than running nose, cough. Good luck to you as you start your treatment and don't ever hesitate to ask questions at any time.

[mts]

SuePer,

Welcome SuePer DuePer...
I noticed that your Herceptin is not being taken in conjunction with any of the chemos..? if so, you may want to discuss with your onc and ask why. There are proven synergistic effects of combining the Herceptin w/Taxol. Don't know the specifics of Taxotere- but if you do a quick search on this topic, you will note that MANY of us Her2'ers did the combo specifically to get the double whammy.
Your Dx is similar to mine- I took H for a year, and was on Effexor. Watch out for that Effexor... It really does take care of the hotflashes- But if you miss just one day your head will feel like a lead balloon. Make sure you always have your Px filled !

Maria

[Sheila]

Sueper
Welcome to our group of empowered women...empowered with love, knowledge and a vision to turn this into a chronic disease. You have found the best place to get your questions answered...someone has tread before you. More will come after....we have a unique bond with each other....many of us only know each other through the board, and yet we couldn't be closer!
I have been on Herceptin 4 years, and have found it a walk in the park...The Taxol I am on right now has given me a few bad hair days, but even it is very tolerable....may your chemo we a walk in the park, kicking butt on those cells!

[SuePer]

thanks for the warning, I changed the treatment from ACT to TCH, so not sure when the Her2 will start.

[Andrea Barnett Budin]

Welcome SuePer, http://cdn-cf.aol.com/se/clip_art/objcts/flwrs/clips/clip1-wedding2Didn't catch the SUPER till Marie pointed it out. Great name, indeed. And your choice of hitting this site is a big step toward HEALING and being heard by those who stand with you and have been through much of what you face. Read my signature and you'll see our commonalities.

So sorry you must go through the whole thing, but you're well on the road. I had my mastec and tram flap reconst at the same time in '95. I agree with you on that decision. Tx were different back then, but I am now on Herceptin ev 3 wks, as I have been since '98. Been STABLE, NED since '99!

Herceptin is a picnic compared to the harder chemo. It's a *monoclonal antibody*, after all... Fatigue, thin, splitting nails for me. Runny nose slight but enough to be annoying. Vaseline at night avoids the crusty pain.

REREAD ALL THE ABOVE POSTS. These ladies have covered everything I would want to tell you and more. DRINK 10 glasses of water a day, every day, like it's been prescribed for you. Flushes toxins, gives you good skin, keeps you hydrated. ESSENTIAL to wellness. Keep a written list of questions. Take your meds. Find which meds work for you. Compazine and Kytril do not work for me. Phenergan is good for queasy vs major nausea when the big guns (Zofran) did the job for me. These drugs make you feel drugged but not sick. A blessing. Prilosec was necessary for me and my doc told me to take 2 at a time, so I didn't feel like I was having a heart attack. Scary.

THE FIRST ANYTHING IS SCARY. So, naturally, the first mysterious CHEMO experience is intimidating. But, like everything else, the anticipation is worse than the reality. My husband and one daughter accompanied me for moral support. I felt the love down to my toes! The nurses watched me like hawks. Very caring, on top of everything. No problems. For me, the nausea came 5 hrs later vs the next day. I learned that you must be your own nurse in watching what your body is telling you and responding immediately with the meds that are wondrous in combating nasty side effects. Some have major issues, others seem to sail through. I pray for the latter for you.

Any questions, any time, contact me on this board or privately! You're in a process. This is not your life. When you get through the tx, you will see the light at the end of the tunnel. You are in a spiritual unfolding. Life won't look like it did. It will glow more. You'll find more beauty and love than you ever knew before. That's the good news! BE WELL. Hoping you'll sail, but -- we're all here with you, watching your back, just in case...

Sending loving, healing energy to you, wherever you are. When you get a chance (it took me yrs to figure out how to add my signature and profile!) let us know more about you. We are newfound Sisters, after all.
Andi http://cdn-cf.aol.com/se/smi/0201e05fca/06

[BonnieR]

SuePer, the "H" in TCH IS Herceptin. "Her2" refers to the gene......

[harrie]

Hi SuePer,
In Nov I had a bilat mastectomy and reconstruction with the DIEP flap which is similar to the TRAM, but spares the muscle. I also had TCH from Jan - May, 6 rounds. It was not fun, but manageable and tolerable. Let me know if I can be of any help. I am currently doing the herceptin part only, once every 3 wks and do not notice any sig side effects.
Take care.
Maryanne

[SuePer]

Thank you ladies for all your support and help, you guys are amazing. This deal is so scary, but it becomes a bit easier when other people have been through the exact same nightmare.

I can't figure out how to do my profile, so here is a bit about me. My Dad died when I was 17 with Lukemia (sp), Mom when I was 25 with MS. My daughter of 15 died in a MVA, and the day after my resent second marriage my son hung himself. I'm a Canadian living in Alabama with the love of my life, we have been married only a year when this nightmare hit us. He is so supportive, kind, loving and I could go on and on. I thank God everyday for him and his family, they are pretty much all I have left. My 2 older brothers live in Ottawa Canada and I don't see them much at all.

So if I get pissed off at this whole routine, please forgive me, I'm just fed up with crap in my life and scared to death.

Here is a silly question, what do you guys wear to bed on you head, doesn't your head get cold. I don't wear hats at all so this is going to be a challenge in every direction.

thanks
Sue

[BonnieR]

Sue, thank you for sharing with us. Now you have an extended family here, too.
For your practical questions. I have gotten a satin pillow case (via internet) which they claim makes the head less "itchy" when sleeping. And I think it is supposed to be warm in winter, cool in summer. Also there are sleeping caps that you get get on line or thru various catalogues that sell products just for us. The Cancer Society has a TLC catalog of these types of thing. Some local women's groups knit caps that they donate to cancer centers. And I was told that the thin cap worn under a wig can also be worn to bed. Use Google.
Does you local cancer society do a "Look Good, Feel Better" program? They give out head coverings.......
I am like you, I HATE stuff on my head. Never wore hats but am finding that a scarf when out, or my wig, are working fine for the short term. I just wont wear them at home. Too confining and "skritchy"
I have to run to chemo. More later.....

[janet11]

I tried a sleep cap from TLC. Every time I turned over it got twisted and I finally realized I didn't need it at all. I was perfectly comfortable sleeping cuddled under the covers (during the winter anyway) with my head out. After all, half the head is on the pillow anyway.

Good luck. TCH was VERY doable for me!

[Cristina19]

Sue,

How are you doing?

I've read your bio and I'm not even going to try to say anything to "make it better." The things that we run into in life are not fair, not right. I recently went through a divorce (that I did not initiate) and often felt as if I was sinking with only the tip of a straw above water to breathe. I'm glad you have a good support system; I am eternally grateful for the man in my life. He has shown me what true love is when it's hard to feel attractive with scars and no hair.

That said, I've been thinking of you. Our diagnoses and reconstruction are similar. I've been trying to get an appointment for a port and it's been a pain to schedule; I'm looking at a third chemo with an IV which I don't mind except that everyone is scaring me that the drugs can damage arm veins.

My chemo is next week. Yours?

Hang in there and ask for all the support you need.

Best,
Cristina

[Cristina19]

By the way, my head does get a little chilly now that I'm stubbly. I've ordered some different kinds of head coverings from the TLC catalogue that's put out by the American Cancer Society but my favorite knit berets I just bought at Target. Seeing as they're a big corporate place, they might have the same caps in your part of the country. They are lightweight; I will definitely need something warmer as the weather cools. Tonight, I pulled out a polartec cap that I bought when I went to the snow in January.

Most anything without seams (or, at least, soft seams) will work okay for sleeping. I also cut the elastic on some of the soft caps I bought because they were just tight enough to press my ears uncomfortably.

When I sheared my hair off, I left it stubbly. I didn't want to be shiny bald. The down side of this was that the stubble against my pillow hurt. Any man who has tried to sleep with a short beard or who hasn't shaved in a day or two will tell you that it hurts. Now I know what they are talking about.

My hair was falling and thinning so much (about three to four weeks after my first treatment) that I couldn't even get away with a short "pixie" cut. I started to look like a monk. The weird thing is that it seems to have kind of stopped falling and even the stubble has grown a little bit.

As the teenagers say: Whatever!

Best,
Cristina