New here, starting chemo soon?

[Chelee]

Someone directed me to this board since I am stage IIIA, high grade, Er & Pr weakly negative, Her2/Neu 3 +++. From what I understand Herceptin is the only drug for us Her2/Neu 3 +++ women?

And also I am told its not as good since I am what they consider Er &Pr weakly negative...I hear its better if your positive? What I don't understand, is I haven't seen anyone else that was told they were "weakly positive", except for me. But I am so new to all this. Either I see your positive, or negative...what is this weakly positive stuff?

Due to this, my oncologist wants to start me on Herceptin, Taxotere, and carboplatin. I was also told that carboplatin is only used when there is mets? Is that true? Because I just had my scans and they said they were clean? Although there was some node involment...so maybe that is why they choose to use the carboplatin?

I am suppose to start chemo this coming tues. and I am scared as I am sure you can all understand.

Maybe this is dumb, but what does "AC" stand for...or mean? I keep seeing it...does AC stand for a certain type of chemo? Sorry for all the questions.

[Bev]

AC = Adriamycin(doxorubicin) and Cytoxan(Cyclophosamide). They kill cells that reproduce quickly, hair and cancer, to clean up the majority of cancer cells have escaped the original tumor. I would guess that one of the drugs in your regiment would have the same effect. AC would be used for both hormone neg end pos. I'm sure you'll get more authoratative advice shortly. Bev

[Becky]

AC is adriamycin and cytoxin - a different mixture of chemo drugs. The mixture your oncologist is using is somewhat common for Her2 breast cancer but AC followed by taxol + herceptin is a more common regime. Do you know why your doctor picked carboplatin, taxotere + herceptin? You should ask. Carboplatin is not only used if there are mets. AC followed by taxol + herceptin is used if nodes are involved (as can be the carbo, taxotere, herceptin mix). It can be used in the adjuvant situation such as yours.


I am moderate for ER positive (50%) but I am weakly PR positive (at less than 5% - some literature calls this negative). People who are Her 2+ can be hormone negative (for both ER and PR) or strongly positive for both (or anything in between). At least half of Her2 positive women are hormone negative. It is good to be ER/PR positive, even if it is weak because after chemo, you can take an aromotase inhibitor (you will start this when you are still on herceptin alone). Herceptin and the aromotase inhibitor work well together to further help prevent a recurrence.

You should ask your doctor about this too.

Do not hesitate to ask questions to your doctor or to this board and we are here to help each other out.

Have a nice weekend.

Becky

Becky, thanks for telling me what AC was. I kept seeing it and had no idea. Its funny that you said ususally they use Taxol and herceptin as that IS what my doctor first wrote down on a paper for me. I asked why he changed to the taxetere after telling me Taxol? He just said it was a mistake...that where he learned on the EAST COAST...that is what they did...verses here on the WEST coast...this is what they use. (So that's all he told me about that???)

As to the carbplotin...I haven't a clue. He just seems to think this is what is best for me and my type cancer. It was put up in front of a cancer board from what I was told...and this is their choice.

Also thanks so much for explaining about the Er & Pr being weakly positive. I couldn't find any info on that. You explained that very well. I really appreciate it so much.

I am glad I was directed to this board...I can see it will be very helpful to me and I can also see there is alot of support here. I need all I can get.

I just wish I wasn't so darned nervous about my chemo starting Tues. Everyone tells me to think positive and get my head in the right place for that. But I already had major anxiety LONG before this came up...so I am especially nervous. I pray I can get through even the first day without a major panic attack. Has anyone else here ever had to live with anxiety/panic attacks and actually made it through chemo? I hope they can give me something if I get to upset.

Thanks for the replies.

[Chelee]

That was my reply above...I forgot to log in. Sorry about that.

Chelee

[Joe]

Chelee,

Every woman on this board was just as nervous as you before they started chemo. Just remember we all are here to help you and support you in anyway we can.

Warmest Regards
Joe

[Audrey]

Hi Chelee, Joe's right, everyone is anxious before starting chemo--but for me, once I started treament I was much less anxious since it felt good to be actually doing something to treat the cancer. Once you get into your treatment routine it just becomes part of your life and is easier to deal with then all the anticipation beforehand. Although it was not fun, I found A/C to be less horrible then I imagined--it was hard to lose my hair, but i honestly wasn't as nauseated/tired as I thought I would be--they have some really good anti-nausea drugs now. Speaking of drugs, my doctor put me on a low dose of Paxil to control my anxiety and I found it really helpful--speak up --your doctor and nurses want you to get through this as painlessly as possible. And remember, for many of us these drugs really work--I was diagnosed 4 1/2 years ago with aggressive, Stage III breast cancer with lymph node involvement, but the combination of A/C, Taxol, radiation and Herceptin really knocked it out--have been NED since 2001! Think positive and hang in there--we're all here for you--

[Chelee]

Thanks so much for your support Joe...and to everyone else on this board. All this is so overwhelming as I am sure you all know too well...but its nice to know there are others out there that truly understand what I am going through. Family tries...but they just don't fully understand. Thanks again!

[Chelee]

Hi Audrey, I am hoping I will feel like you once I actually know I can get through the first chemo treatment. I want to do something to fight this...and this is the only way...so I have to do it. I know it won't be easy...but its all the unknown I guess. People say its not easy, but its doable. I just wish I didn't have this darned anxiety...it makes things so much worse then they would be. Very frustrating. But I have been on meds for my anxiety...which it was helping...until this came up. I have mentioned it to my doctors...so we will see what they might need to change or adjust so I can do all this.

I do have all the anti-nausea drugs...one that I am to start the day before chemo...and some during, and after. So it looks like they cover that really well. I will sure find out soon enough.

Your story is encouraging because I too was diagnosed with an invasive aggressive cancer...high grade, stage IIIA, also with node involvement..and Er & Pr weakly positive. So its nice to hear how well you have done! To be NED since 2001 is aweseome to hear...music to my ears.

Thanks for sharing your story with me. It really makes a world of difference to me and keeps me hanging in there...and thinking positive. And believe me...I seriously need all the help I can get these days. God bless you.

[Bev]

Hi, I felt like I was having a heart attack the week before the first chemo. I did get Ambien which I used before transfusions. It helped some. I took 2 and slept 4 hours.

It gets easier with each time. I don't take anything now. Things that would give me anxiety attacks before cancer, ie getting lost driving and flying, don't even show up on my radar now.

I can't say don't worry, but the transfusions themselves went fine for me. I bring DVD's. I can't focus enough to read, but can follow movies even with subtitles. You just feel unwell the days afterword, but not in a horrible way.

It's one day at a time. After the first day you'll be on your way to getting better. You should have someone go with you for a few times, so that you don't drive by the Dr.'s office and skip town. The rest of us have made it and you will too.

Good Luck, Bev

[Chelee]

Thanks Bev! I am lucky enough to have my husband taking me to my first chemo...and probably most there after? We will see how it goes. The first day is going to be a long one...five hours they said.

I am glad I am not the only one feeling so stressed over this chemo coming up. I have had my throat feel so tight and like its hard to swallow. My own fear bringing on unnecesary problems. So I can relate when you said you felt like you were having a heart attack the week before. I am close to that myself...I am serious too! I am trying to settle down...but its just not easy.

If it gets too bad that day...I hope they can give me something to mellow me out so I can fall asleep, or at least relax SO WHAT if that is possible? When I went last week to meet with the infusion nurse for she could go over things...I did see one older women in a chair and she was sound asleep. I was sitting there thinking to myself...I hope it goes that well for me. She looked so comfy. I was shocked.

I did see they have flat screen tv's for each person to watch while your there...but it was dumb how they had them way UP on the ceiling almost. You would break your neck trying to watch it for any lenght of time. Maybe I should buy one of the DVD players like your talking about. That might be a great idea.

Thanks so much for your post. You guys have all been so supportive and truly are making me feel better about this. I am so thankful for all of you. I keep trying to think of how many people have made it through chemo as you mentioned...that does give me hope. If I didn't have this darned anxiety of mine...long before my diagnoses...I would be much better off. But I am sure they can give me something if I can't handle it. I will give it my best shot...I have too.

Thanks again.l

[Becky]

Chelee

I will be thinking of you on Tuesday. Bring lots of activities with you. Like Bev, I can't read during chemo (and I still have a couple of Herceptin alone treatments to go and I still can't read). You will meet lots of great people in the chemo ward (if the rooms are open and you can see and talk to each other). I am a crossword person so I did lots of those and played electronic Yahtzee (which I still have in my chemo bag that I take to Herceptin). I also read magazines as the articles are shorter. I just can't concentrate long enough at the cancer center to read a novel/book although I can do it at home. Watching TV or a movie is great but there are only 2 spots to do it in at my cancer center so I have only had that once in all this time.

If you drink tea or an unusual beverage, bring your favorite as they might not have what you like. Usually they have the basics like black tea, coffee, apple juice (yours might be better than this).

Make sure they give you a blanket and pillow (just in case you need them to be extra comfy). Try to drink, drink,drink - especially water to get that chemo out of your system. And bring some food. You won't feel sick during infusion. You might alittle bit a few days later but the anti nausea drugs work good.

We are all here rooting for you. I never thought I could do it but it wasn't that bad at all. You are curing yourself with every drip that is good to the last drop.

Cheering for you here in NJ

Becky

[TriciaK]

Chelee, It may help your anxiety to do some self-hypnosis or guided imagry. It has really worked for me and I have been fighting BC for 20 years (NED again now!). To do it, focus on your breathing, breathe slowly and calmly, deeply if you can, but especially concentrate on breathing slowly and evenly. Concentrate on relaxing each muscle in your body, starting with your face and jaw. Visualize the chemo flowing through your body, engulfing and destroying cancer cells, healing your body with a warm white light flowing through every vessel, muscle, joint, and cell.You are doing the right thing to heal, you are overcoming and fighting the disorganized, un-natural cancer cells, and you will win over them. Make yourself a mantra and keep repeating it, like "I am healing". over and over, or "Everyday I am getting better and better."
Sometime ago I sent three "lessons" on self hypnosis and guided imagry to help us on this web. I have done it for years myself and also help others learn to do it as a professional counselor in psychology. If you wish perhaps you can find them on the site by typing in my name "TriciaK" or perhaps someone else can tell you how to find them. If you want to contact me diriectly for more on this free and simple method of fighting cancer, my email is pairadox@cox.net. The deep breathing exercises will help immensely by themselves but the guided imagry will help even more, I promise, and it is something you can do yourself while undergoing chemo or just relaxing. THese positive exercises will take the place of the negative thoughts and fear that are now filling your mind and are so debilitating.
You have a wonderful support system here on this website, and the chat room discussions are wonderful, too. We have all been through it and are all here for you! Hugs, Tricia

[Chelee]

TriciaK, & Becky, thanks for the help and ideas for my chemo treatments this Tuesday. Tricia I have had others tell me to try things like your mentioning. I sure plan on giving it my best shot. I certainly want to keep my mind on only the positive things that day if I am capable of it. I do want to work on my breathing as you mentioned...I have read about that when I first started having these darned anxiety attacks. And it DOES help. I am going to try those exercises Tricia...thanks for sharing them with me. I really appeciate it.

Becky, I have a bag set-up with things I plan on taking to my first chemo. Lots of new magazines that I have not had time to read. I like magazines because as you or someone said...the stories are shorter and I don't have to focus as long like you do a book. lol I also have a hand held nientendo I never use that my grown up step-son gave me. I think I might try it too. I am hoping the tv will come in handy there. From what I saw that one day...all the chairs are lined up and each person has their OWN tv. The only thing I didn't like is the TV's were WAY up almost on the ceiling...I kid you not. But I guess if I push the recliner ALL the way back I could watch it. (I just hope they have head sets so I don't have to listen to everyone elses tv...that drives me nuts. And that day I was there...I heard all the tv's going...so I am afraid there is no head sets. But I will find out all too soon enough. It seems like everyone is all lined up there...no privacy that is for sure. I guess you make friends rather you want to or not. lol I suppose its easier on the nurses to watch everyone that way.

As far as food and drinks...I am not sure what I will take. I am a big water drinker which I hear is a plus for me. I don't go any where without water. So I will be taking a couple BIG bottles that day. I just hope I don't have to get up and potty every five seconds...seems I have a small bladder.

They said to bring myself a snack...but since I was told I have cancer...my appetite is gone. So I haven't a clue what I might take to nibble on? Plus I had a rough year with a dentist...so now I have to be careful what I chew on the one side I have left thanks to him. So it can't be alot of hard stuff. So I don't know what they mean by snacks. I just haven't been hungry...I have had to FORCE myself to eat. This has been a heck of a way to diet. But should I get hungry...I can have my husband go get me something. He plans on taking me there. Even if I let him leave for a while to give him a break...we only live about 10 minutes away...so he can get me something if it gets too bad. That's if I am hungry at all with chemo? (which I doubt I will be?) Although I noticed you said I would NOT be nauseated the first day of infusion.

Anyway...thanks to all of you for your help and support. All this has been so overwhelming and it really helps to have others around that truly understand what your going through. I just hope my first day goes better then I think. I think if I get through the first day ok...it will be easier the next time.

Thanks again to all.

[Barbara2]

Hi, Chelee,
Those of us who have had chemo, can very much relate to the nervousness that came before the first time. Before starting, they took my blood pressure (as they often do before and during treatment) and it was very high. My onc joked with me and asked if I was just a tad nervous........

Pain: A friend of mine who just recently was facing her first treatment, asked if it hurt to have chemo. No. There's the little prick into your port, which has never bothered me, and I don't like shots. And sometimes, depending on the type of chemo, you may feel a "sensation" somewhere in your body. I had that from time to time, but it didn't "hurt."

Anxiety: Yes, for 23 years now, but it has decreased enormously since cancer. My first anxiety attack came a couple years before our first child was born. I was so afraid I would have an attack while trying to have that baby. I didn't. I had too many other things to focus on. As I've aged (55 now), what used to be big issues, I now see as frivolous. As Bev said, what used to cause her anxiety, does not even register on her radar now. That brought a smile to my face, as I definately can relate......... As they say, "Don't sweat the small stuff".......it's so true. Since cancer, I can really sort out the "small stuff."

Organization: I kept a bag packed with things I wanted to have along when getting chemo...something to read, maybe a small project, cancer articles, my lab book (that you will receive; you'll need to bring it with you each time so they can record your blood work in it. It is for your information and is nice to have.), and a little notebook that I used to write down questions to ask when seeing the onc, and other odds and ends.

Food: You'll want your bottle of water probably. They will offer you a choice of drinks to use when taking any oral medications which are given before starting treatment. They also offer treats (any assortment of the small snack bars, graham crackers, crackers, etc.) but often times they are too busy to think about that, so you may want to have something of your own. Sometimes over the lunch hour people have someone pick up something for them from a fast food place, or whatever sounds good.

Appetite: It may decrease during this time of chemo treatments, but that is OK. Try to eat nutritious foods as much as possible. Your appetitie will return!

Sleep: I'm not a sleeper, but many are. If you can sleep, great. Curl up with a blanket and rest. Some of the pre-chemo oral drugs may make you sleepy.

Focus: Visualize yourself as healing. Try to look ahead to times after chemo; maybe even an event to look forward to. My husband likes to say, "This too, shall pass."

Attitude: My surgeon's nurse said, "Breast cancer is the best type of cancer to have. There are so many effective treatments now." You will be getting a treatment that has shown great results for many, many people. Long lasting results. Many are still NED (no evidence of disease) and many will always be.

You'll be just fine!

Blessings,
Barbara

[michele u]

Chelee,

I also was dx with stage 3 very aggressive. I had 35 postive nodes. I am 2 1/2 years out and doing well. Did AC then Taxol then Herceptin for a year like my dear friend Audrey. We met on this website and have flown to different parts of the country to meet eachother. she also saved me!! Her story was the one i held onto very tight through tx. It really is not that bad. I only threw up once, i'm i vomited just at the sight of food with my kids!! Hang in there. I really don't remember much of it now, so it can't be that bad!! Taxol and Taxotere are bacisally the same drug. There has been some studies on Maitake mushrooms and Herceptin use. Go to www.maitake.com and you can buy the tablets there. I still take them. I take 2 a day. THERE IS LIFE AFTER BREAST CANCER !!!!!!!!!!!!

[fourboysmom]

Hi Chelee,

Whenever I see someone taking Carbo/Taxotere/Herceptin, I like to respond. I got that combo neoadjuvantly(prior to my mastectomy). I , too am high grade, ER-,PR-,HER +3. I did not met, but my tumor was really big, 5-6 cms. After this combo, it shrunk to a few millimeters.(powerful stuff). Then I got A/C after my mastectomy.Now I am in the middle of rads. Goodluck with everything...you do not walk this walk alone. Love, Janet in CT

[lu ann]

Dear Chelee, I was diagnosed 14 1/2 years ago with breast cancer. I had NED up until Fall 2003. I had severe pain in my back that I thought was caused by working on the computer. I finally saw a doctor Jan. 04. I was dignosed with a compression fracture to my spine, which turned out to be a matastesis. Actually that was 2 years ago today. At that time I thought I had just months to live. What I have found out though is that those of us that are her2, even though hormone negative, do much better then we did in the past due to the use of herceptin. We all know how you feel. It's like falling into a big black hole and you feel like you will never get out of it. It has taken me a long time to feel as though I can live with this disease. We are all going to die someday. Once I accepted that, I became a new person. We are here for you. And God is with you. Take care and God Bless You. Lu Ann

[julierene]

Chelee, I wish you well on this icky subject. AC wasn't as bad as I thought it would be either. I was 28 at the time, and I had just had a baby and a bilateral mastectomy. The chemo for me was way easier than the surgery. I do still miss my hair. Hence, the reason I still probably choose to put my pre-cancer picture up. That picture was taken right before I lost my hair. I was glad I took it.

I would have a friend come over and take some really good shots of your hair before you loose it, and that way you can always have it to remember. I think I would have been upset if I forgot to take a pic. I also took some of a really short haircut, and a bald one too, but it helped me - and that's what's important.

LuAnn, sounds so much like me. I thought my back hurt cause I had just started a new desk job in August. I had back pain in september, and by december, I had t7 and t8 met, also L1 and S1, my left clavical, and my right femural neck bone on top of 2 liver mets about 2cm and under each. I thought my world was over. But after reading so many of these ladies stories, I feel like I might actually have a chance of more time than I thought. I love this board, and I will probably be posting here from now on. I feel so much more encouraged since I started reading it. Many of the others, I can't say that about. These ladies here are really great.