Triple postive??

Hi there Laura,

You look pretty cute w/your head shaved!

 I am STILL waiting for TX and 2 more tests. I don't know what the heck my estrogen levels are yet so I'm still frustrated. I've also got this little pain below my rt. rib (where bc is) so I'm praying I don't have mets.  (Is this common or am I crazy?)

I too want RC if I have to remove my breasts. 

Anyways just wanted to say hi all.  You are all right about reading info on the web. Lot of it is old and just scares me.

Take care,

Jeannine

Yes.. read NOTHING on the web... just here.. you can find anything here and it it TODAY!/Not six months ago and beyond!

Thanks about my head...lol... it feels great!

When I found out I had BC.. my back rib pain haunted me. It had been there for about 6 months bothering me. Now I new I had mets in the ribs and just did not know it.

Well guess what... I have no Mets.. and the back rib pain is muscular not ribs...

But when I found out about the BC.. I NEW it was in more than my breast and nodes.

Hang in there.. I think you are at the hardest part. The testing and waiting.

When my Oncologist said no mets.. scans all clear.. I cried.. I AM NOT A CRIER.. WOW.. she put her hand out and dh hugged me.. she had no idea I was so worried about that.. BUT WE ALL ARE !!!!!!!!!!!!!!!!!

YOU WILL DO GREAT!

Gods Love,

Laura

Hey Jeannine, when are you suppose to get all your tests back?

Gods Love,

Laura

I am new to this, but figured that finding people who have the same thing going on in their lives would help me cope. I am 46 years old and also triple positive. I couldn't find anything online except this message board about the triple positive condition. My dr. said that only 10 percent of breast cancer patients are triple positive. I guess that puts us in a catagory all our own.



I started treatments on Aug. 7th, 2008 and I haven't had the experience they said I would. I didn't get sick, and I haven't lost my hair yet. My dr. said it would be gone anywhere from 10-14 days. I guess if I don't lose it by next week maybe I won't. It doesn't matter anyway because I already donated it to locks of love. It's buzzed!!



I had three tumors 1.0 cm., .6 cm. and .4. When the path report came back they said it was a 1.5. I guess they totaled it. I don't know how that works.



Anyway, I am also on Herceptin, and she told me I would take it every three weeks for a year. Then, I will do the tamoxifen regiment. Menopause, oh yeah, can't wait to see what that does to me. They also want to do radiation after the chemo is finished. I guess I will do that too just to make sure the cancer cells don't spread.



You know I did research to make sure that a lumpectomey would be as effective as a masectomy, and with everything I read, the re-occurence rate is the same whether you have one or the other. That is why I decided to go with the lumpectomey.



My hope is that all this medicine keeps it from coming back somewhere else. I guess I'll just have to wait and see.



Is there anyone else who hasn't lost their hair yet?

Hello,

I'm also triple pos, onc kept saying, that's odd, that's odd.  Sort of disturbing.  He gave me my treatment plan back in end of June, after lumpectomy and SNB (0/1 node) and re-excision for wide enough clean margins. 

4 A/C, then 6 1/2 weeks of radiation, then Herceptin every 3 weeks for a year and Tamoxifen for 5 years.  I was not expecting it, the aggressive treatment.  (knew I'd have rads, and knew about the Tamoxifen, ER+).  He said it's due to my age and being HER2+, the chemo and Herceptin. 

I found it all overwhelming and have a hard time thinking about the treatment down the road, have 2 more chemo's left, been focusing on getting thru this part.  But lately I've been feeling a little concerned about this whole path he has me on.  He said A/C is hard on your heart, they give me IV meds to protect it.  Herceptin is known to be damaging to your heart as well.  My rads will be to left breast, heart and lung area. 

Makes me wonder why he chose A/C for me?  It must be worth any risk?  He did tell me I won't have Taxol because of no node involvement.

Anybody know more about this or having this same concern?  Maybe I'm on the wrong track.  I'm kind of a worrier, so maybe its just me?

Glad there is a board like this!

Take care.  Marcia  

Hello Marcia,

I totally understand your concerns about the treatments.  Your dx is just about the same as mine, and I am having 6 treatments of Carboplatin, Taxotere and Herceptin all at the same time.  I was concerned because I have an irregular heart beat, so she had a MUGA scan done on my heart to make sure I could tollerate it.  It came back normal, except for the heartbeat, so I was a good canidate for the treatments.  I think it will be fine.  I don't worry about my heart at all.  I just worry about the cancer coming back, but that is why I have to go through the chemo.

It is going on 16 days and I haven't lost my hair yet.  I did cut it all off though.  You know I'm more worried about being thrown into menopause than anything.  So far, I have had only one treatment and I have felt normal.  I feel very lucky.  I was told what to expect, but it didn't happen at least yet.

I am thankful that I can talk with others who are going through the very same thing as me at this time.  I have talked with women who went through it a few years ago, but it isn't the same as talking with others who are experiencing it in the present.

Just breath, and don't think past today.  Have you been feeling okay with your treatments?

Lynna

Hi Lynna,

 Thanks for your post.  I know that they will watch my heart closely during Herceptin, it just freaks me out sometimes!

I have been doing ok with treatments, After the first they made a change to my anti-nausea IV med, I'd gotten such a terrible headache, and I learned to eat small amounts real often, with Maalox around the clock for the first few days.  So 2nd tx was better that way, but on third day I got wiped out feeling for about a week, so exhausted, had some low grade fevers, mouth soreness, etc, but nothing they were overly concerned about, just SE's.  This past week has been better, then will get tx 3 this coming Friday.  Its been do-able, and will get my last on Sept. 19th already!

I still wear my own thin hair with a bandana, and its been about 38 days since my first chemo.  I had my long hair cut short for Locks of Love.  Chickened out on shaving the rest when it started to fall out, glad now that I didn't. 

The menopause thing freaks me out too.  Have been waking up with some night sweats just lately, but no hot flashing.  Have not had my period since mid-June, started A/C July 18th.  This weekend got cramps and started spotting so who know what's up with that!  I think the real menopause part will be more with the Tamoxifen down the road?

I do really like these boards, everyone is so helpful, and there aren't people in my everyday life that have a clue really!

Take care!  Marcia

Hi Laura,

My hair is now beginning to fall out.  I would say it is about 20 percent gone now.  I have my second treatment tomorrow.  I hope it goes as well as the last one did.  I didn't react bad at all with the first treatment.  Did they get rougher for you as you progressed? 

I was scared a little when I found out too.  The things that go through you mind at a time like that are overwhelming, but I'm fine now. 

I didn't find out that I was triple positive until they took my tumor out.  The biopsy didn't show what type it was.  There again, I was scared about having the Her2/nu.  That freaked me out a little.  I guess they can get the re-occurance rate down significantly by giving us chemo and herceptin.  I am taking all at the same time and have five more treatments to go.

I am 46 and all my kids are grown and living several hours away.  I am a teacher, so I took off this semester so I wouldn't catch anything from them.  I have 651 students every week.  I miss them, but I hope to be back to work soon.

Thanks for the information.  I did go check it out.  I am so glad there is a support group for all of us.

God Bless, and take care.  Hope your next treatment goes well.

Lynna

Flash,

Thanks for the info.  I have finished my second treatment and doing pretty good.  My body is responding I think the best it can.  I'm not getting sick, just a little tired, and my hair is flying away.  Other than that, I think I'm doing pretty good.  My next treatment is in two weeks, and that will be midway for me.  I'm just counting down.  I know so many people have gone through this and are standing tall with no signs of cancer for years now.  If they can do it, I can.

God Bless,

Lynna

Laura,

I read your post of July 26 and just wanted to say that I had implants for about 8 years prior to my dx.     My docs all agreed that implants are contraindicated with rads.

When I had my surgery the implants were removed prior to my lumpectomy all during one operation.  I do not plan to replace the implants.  I just finished my 3rd A/C and will get 1 more before starting Taxol.  Rads will begin in January after a month off txs in December.  One year after rads, I can opt for a bilateral breast lift which is considered reconstruction.

 I hadn't found any other posts regarding implants and rads. Its' kind of lonley regarding that issue.  Seems everyone is getting them after surgery  but I just wanted to let you know about my experience so that you could know that someone else was given the same info regarding implants and rads that you were given.

Roya

Thank you ladies for all your help and answers!

Gods Love,

Laura

Congrats Lisa!!! That is awesome.. 6 yrs ! Thank you for sharing that with us... it is so great when longer term survivors come back and post to us!

Live long!!!

Laura

WWWWWWWoooooooooooooooooooHHHHHHHHHHHHHHHooooooooooooooooooooo

Love NED. NED is a great guy. Congrats on "bagging" him.  Hope NED is a permanent relationship. LOL  It's so nice to hear your good news laura.

Hi, I have been lurking on these boards for a few weeks. It is so good not to feel that I am the only one going through this, and also GREAT to hear from those who are years out from their initial diagnosis, as I have been down in the dumps a bit lately about the recurrence rate with HER2+ a bit lately. 

I was diagnosed late July, had a lumpectomy and SNB (negative and clean margins around a 1.1 cm IDC tumor) in early August. I have just completed 3rd of 4 chemo treatments, and I'm getting buyer's remorse that I chose the wrong chemo treatment regimen. (Like one writer above, I am a worrier, too -- I KNOW I need to let this go, but I don't feel compfortable sharing this anxiety with my family or friends. I'm the "Everything's fine!!" gal.) 

Anyway, I was given the three different oncologists' recommendations and, of course, they all differed. (And each oncologist is highly regarded in my area, one @ Mayo, two top oncs in a major metropolitan area.)  One recommended DD 4X AC then 12 weeks of TH  (Paclitaxol + Herceptin; continuing on w/ Herceptin for a year ). The second recommended 4X Taxotere/Cytoxan/Herceptin (with H for a year). The third recommended 4X TCH (Taxotere/Carboplatin/Herceptin, with H continuing for 1 year.  I ended up choosing the final recommendation.  Is/has anyone out there doing/done the TCH regimen?  Seems like most posters here are doing/have done the AC+TH regimen, so that gets me to thinking I screwed up. I tried my best to research the options before choosing, but I had limited time (and medical knowledge!!!) and it seemed like TCH was a reasonable choice, but...if everyone else went the AC route, yikes!!!  I don't know what to expect back from this post (since I know I can't go back and change my decision), but at least I feel a bit better simply aknowledging my anxiety.

Not sure if my "stats" will post below, but if not, I am Stage 1B, 1.1 cm, Grade 2, 0/4 nodes, triple positive. Thanks!

Help!  I need a sense of peace that my treatment plan is "in the norm"!   How many of you are doing just 4 rounds / cycles of TCH (with C being carboplatin)?  Did your onc tell you why 4 rather than the normal 6 rounds?

 I am continuing the H for a year, so that is not the issue. I am only questioning the length of the chemo part of my treatment.

Thanks!!!