TRIPLE POSITIVE GROUP

Morning ladies.  Seems like forever since I was on last but wanted to check in.  Wow, way too many newbies but at least they've found a great spot.  I see Ashla is still posting great articles.

Fluff:  Thoughts are with you today!

Yesterday was my 4th T/H/P TX.  My new MO has been on maternity leave so I've been seeing the NP.  I asked her what she thought about me getting my port out a little early.  She said when patients ask she usually says a year after the end of chemo is usually what she recommends.  But it's up to them.  IF it would come back then they would out a new one in.  I told her I was thinking about having it out early so I can have my exchange and reduction on my left at the same time.  She said that sounded fine with her.  I just needed to have the nurses look at my vein to make sure I wouldn't have a problem with the last 7-8 Herceptin TXs.  

I had my blood work done before chemo yesterday.  My WBC was a little low again just like it was before the first TX.  She said it was ok with her to do the TX because I had it the first time with no issues and everything else looked good.  She is recommending I come in next Tue to make sure they went back up.  She said when she is going for curative that she doesn't like to delay or lower the dose of chemo.  That is the first time she has ever made that comment.  Did she mean because I'm stage 2 and not stage 4?  Does she actually think this is curable or could stay in long time remission?  I know there is no cure for cancer but there are some that never have the cancer come back.  Does that mean they were cured or lucky?  I was a little stunned when she said it that I didn't question it.  I won't see her again for 3 weeks.  

I'm on weekly Taxol and my WBC has moved around.  Week 1 was 1.9, week 2 was 3.4, week 3 was 3.8, and this week is 1.9 again.  For weeks one and four, I had blood drawn the morning of.  Weeks two and three it was done the morning before.  The night before my TX I take 5 dex tablets.  Do you think that could be affecting my WBC the next morning?  

I am so thankful for the triple positive group!  On 9-17-14 I received a bi-lateral mastectomy.  I will be meeting with my oncologist next week and the fretting/anxiousness is setting in.  Before surgery last week, the BS thought my IDC tumor was .8mm to 1cm and my pathology report after surgery noted that it was only .3mm.  They tested all breast tissue removed and it was clear.  My final staging noted is T1A NOMO.  I met with the oncologist before surgery and she noted that I "probably" would be looking at taxol + herceptin once a week for 12 weeks and start tamoxifen immediately after for 5+ years. My BS said she thought it could be lighter due to the actual size of my tumor was smaller.  Anyone have any thoughts on this.  Thank you sooooo much!!!  I am a nervous wreck.

thank you.  I am going to read it now.

Hello Group,

Here is my news. Had the ultrasound today and saw the BS. She felt what I felt, so at least I didn't feel like an idiot. Thinks it it fatty tissue, but said there is a cyst also (and then told me it was fine and nothing to worry about as she saw my stressed face) and that perhaps that could be causing the tenderness.

She said she will have a better idea after the MRI in November and I'll see her again in December, but she didn't think it was anything to be paranoid over. Said they could drain it if it gets worse but she wanted to see the MRI first, if,possible. So, I am breathing easier. 

She normally runs pretty late getting in the room to see me,and today was exceptionally so. I sat in the exam room for an hour after my ultrasound. I Felice she was doing a biopsy for someone from what I could hear through the door. The longer I sat there, the more it reminded me of waiting for my results after  the diagnostic mammogram. Feels like the longer you wait, the worse the news.

Relieved that all seems ok. I can deal,with the soreness and not focus, now that I know it isn't a huge issue.

Thank you so much for all the good wishes. Love this group!

Wonderful news fluff! Now you and your daughter can ROCK NYC!

Welcome Geishagal!

Great your tumor was small enough to give you this relatively new chemo regime that drops the C in TCH! Very, very interesting. Progress

Hope that makes your treatments easier.

Mommato3 when you are early stage (not stage IV/Metastatic disease) they are treating you to cure. No one will ever say you are cured till about 20 to 25 years pass with no recurrence though. Although they say there is no cure what they mean is there is no known cure. You would be surprised that more of us early stagers are cured than not. So yes she was saying there is a good possibility you will be cured.

Fluff great news. Things are looking good.

Thanks everyone for your responses. I just found these. Being new to the site I'm still finding my way around. An update on my treatment. I had six rounds every three weeks of 4 chemos, carboplatin, taxatere, pertuzamub, and Herceptin. Two weeks after last chemo I had a lumpectomy with 5 sentinel nodes removed. That was a nightmare for me because first the Dr's nurse practitioner told me they would be putting wires in my breast and they wouldn't be using local anesthesia. Thankfully that was all worked out, long story short answer. It would have been nice to know all about what the procedure entailed before hand and yes, I did get a local anesthetic after all. All margins were clear including around the tumor which is good news. 4 days after surgery I continued with Herceptin and will continue every three weeks for a year. I am two weeks out from surgery and still have some swelling but am starting to feel like myself again. They want to do radiation, every day for 5 weeks with a 6th week of boost. Still researching whether radiation works for her2, unfortunately nothing out there to be found and no studies done, only hormone driven breast cancer studies. Still wrestling with the risk to my heart and lungs on the left side as well as radiation causing other cancers along with other side effects. I need peace about having radiation. My logical mind says no, but. Also, are there any her2 positive survivors over 10 years?

hey Mannettes - glad you found your way back.  I am sure there are many 10 year her2 pos survivors out there but not so sure they are still active in the forums - many many just move on.  But I did find this thread 

https://community.breastcancer.org/forum/80/topic/...

And it has two her2 pos that are 9 years and almost 9 years that are still posting or have come back just to let others know!.

Hope you come to peace with your decision on radiation and glad that you are in recovery from your surgery.

Thank you for showing me this post. 9 years it great and her words were very helpful. This site is great and so helpful.

Fluff, I'm so happy for you.  

Linda, so good to hear you are doing so well!

Manettes, there are plenty of Her2+ women that are 10+ years out.  As others have pointed out, not everyone sticks around after 2-3 years.  They usually move on with their lives.  Like Linda said, we are lucky to have a great group of women here that have stayed to help us through this process.  

Lago, I guess in my head I keep thinking that there is no cure for breast cancer.  I've read so many posts (not this thread) where someone has said they get mad when docs talk about a cure (because there isn't one) and that it's just a matter of time before it comes back.  It has made me wonder at times if I'm just being too optimistic about my chances.  

mommato3....I don't know whether I believe we are cured or not, but what I do hope is that there are tools in their arsenal to have it become a treatable, if ongoing, condition. I can't say cured, as I feel that is surely a curse on myself, lol. I use no evidence of disease. If someone asks me if I am ok, my answer is "I don't know that I'm not, so I'm going with yes."   Although the last week rattled me a fair amount. I have a wedding next year. Was hoping not to have to wear a wig.   Although, I did like my one human hair wig a lot. Way better than my hair, and thick!

Got my density results back today. I was concerned because the technician started out all perky and fun and then towards the end barely gave me the time of day. Thought maybe my bones were turning to dust, but all is ok. Doc told me to keep taking calcium and vitamin d.

Boss is crazy. Last day was Thursday. I spoke with the gal who had the position before me… No one will ever last in this position working under this "manager". As much as I needed the job it was an unhealthy environment and impossible to succeed. My recruiter might have something for me soon that she's working on. I think she knows the issue and feels bad. We both thought this would be a perfect fit. You can't see crazy in an interview 

lago - bummer on the job - hope the perfect thing comes along soon for you.

Today is the day I was diagnosed four years ago - sooo much has happened in the last four years but I am so happy to be here, and feel encouraged that I still am!

lago - me too, here's to great company in a crappy situation! I felt, and feel, lucky that the great ladies of triple pos were here to form a supportive and informative sisterhood!