Calling all TNs

Marsha - thanks for filling me in on the details of your chemo experience - that sounds horrendous, and it is very clear that chemo was not right for you. I wish you the very best. Glad that you are feeling better and are happier with your current doctor - that is important. Hugs.

Gilly, it happens sometimes. Could you tell if it effected you LE any? I hope your throat is okay.

I'm just hanging out today, day 3 post AC infusion. Things seem to be okay. I'm hoping I have enough enegry to go to a ballroom dance tonight. We will just have to see how this afternoon goes. These dances lift my spirits.

Kay

Oops ..somehow missed keeping track of this thread!!

so happy for you mags, and how are the others doing!

thanks so much Jenjen and thanks a lottttt InspiredbyDolce for the inspiring information! will let you know my email address...

completed 3 rounds of dose dense AC! Bad... terrible nausea, couldn't take tablets...basic ones given through injection...one last round of AC left and then begins dd taxol..

all my love to all of you and lots of hugs!! you are always in my prayers and i hope they come up with targeted treatments for triple negatives very very soon.... it seems some 82 trials are going on for tnbcs!!! some hope..:)

Good afternoon everyone, this is my first post but i have followed along for a little while. I am 48 years old and was diagnosed in June of 2012. I had a mastectomy, reconstruction chemo and radiation. I finished my last treatment at the end of February 2013. I have struggled with the fear of reocurrance and while I try to remain positive I have been having some achiness and pain in my legs and it scares me. I don't want to be afraid everytime I hiccup and i don't want to allow my mind to play tricks on me either. During the chemo the docetaxel really affected my legs and feet and I now take some medication for nerve damage so i struggle with whether this is different or more of the same. I had hoped that as time went on I would feel more relaxed and confident in the idea of being "cured" but in some ways it is harder in the sense that the clock is ticking and it is only a matter of time. I try and live each day to its fullest and not dwell on the possibilities but there are those days when that is so very hard to do.

Hi Jo-annh14,

I finished treatment January 2013 and can totally relate to everything you mentioned from pain, neuropathy, fears, etc. It is certainly difficult to know who to turn to with different ailments. I finally went to my family doc and asked him straight out what is the process for reporting aches, pains and symptoms and he told me that he is my advocate and I can come to him for anything and he will take my concerns to my onc - I find this works best for me because he seems to have better access to the onc than I do. My onc only wants to see me once a year because I see my surgeon every 6 months and my surgeon is much better about ordering tests and scans than my onc is. But she has operated on every one of my family members who had breast cancer and knows our history.

Sometimes I would love to have a place to express my deepest darkest fears of this journey without someone telling me that I am strong or that I have beat this thing. I thought of a diary but would never want any of my family to ever read it. I guess we just continue to do the best we can coping and that is all we can do. I know I was stronger during treatment than I seem to be now because I had a purpose and timeline to complete treatment and now it just feels like I am now just waiting for it to return.

Wow, this certainly turned out depressing when all I wanted to do is encourage you. Lol,

A friend of mine got mammogram results today, said everything was clear but she has dense breast tissue. What exactly does this mean?

She is 40 and said this is the first time they have ever told her this. I did read that woman with dense breast are high risk for BC. Which sux! I told her to just call her dr Monday and get better clarification from him. Thank you!

tekwriter welcome to the boards, sorry you are here. You will find great advice from a great group of ladies. Things do move fast, this cancer is aggressive and has to be attacked hard. I am almost a 3 year survivor. I was stage 2b, grade 3, I did 6 rounds of TAC, then lumpectomy, then 28 radiation treatments. I am cancer free! Each and every situation is different, you and your dr's will choose what is best for you. Good luck and God Bless you!

Jianchi....you will...give yourself time. One day at a time, one treatment at a time.

I am home and recovering from my latest reconstruction surgery. It went fantastic this go around. This was my 6th surgery with this surgeon and she is amazing. I cannot wait til I can say "I am done"

Maggie

Thanks every one for the welcome. I am grad to be here, well as glad as I can be. I live outside of Winston Salem and right now I am going through the Novant Health which has a comprehensive cancer program. I do like my surgeon and Oncologist. Wake Forest is here and they are a premier cancer center and if I were going to travel I would surely go to Duke which has been the gold standard all of my life as a North Carolinian. Novant is using a multidisciplinary approach. There are nurse navigators for me to call for help and there are daily team meetings between the Dr.'s and Surgeons for those of us in treatment so all are on the same page. I found the Oncologist to be a kind man and very hopeful. I sort of wanted to hug him before I left. The surgeon was straightforward and I like her a lot also, she was bright and funny. Is AC chemo? I don't know about the research. I haven't done a lot yet. I have a friend who normally goes to appointments with me. She may be good in that respect. I think I will ask her. Thanks to all for your advice. If there is anything I can do for someone please ask.

Tekwriter, I'm glad you are going to a cancer center that has a lot of resources. That's nice. It's important that you have confidence in the people providing your treatment. It also seems like you have a lot of options in terms of treatment centers close to where you live. It is good to have someone you like and trust to go with you to appointments where you are likely to be recieving information about your cancer or your treatment. It helps to have another pair of ears just to confirm you heard what you thought you heard. I also write down any questions that I want to ask and take them with me to appointments with my oncologist. I actually type them up and take two copies. One for me and one for her. That way, she knows the things I want to cover and she is very good about answering all my questions. She likes to add a copy of my questions to my medical file....that kind of surprises me, but doesn't bother me at all. I start working on my list of questions about a week before each appointment. In the beginning, I was so scared and didn't know what to ask so I didn't do this for my first few appointments, but now I make a practice of it. It makes it easier for me to listen to what my doctors have to say, because I'm not trying to also make sure that I remember to ask everything I wanted to.

AC is a common form of chemo that many people with triple negative BC get, but there are also many other treatments. Your oncologist will tell you what he/she thinks is best for you. You can get some ideas of the various treatment forms just by looking at the signature lines under people's names on this thread.

I'm trying to get back to regular exercise. I got kind of lax toward the end of my 12 weekly taxol treatments and over Thanksgiving. I know I feel better if I exercise gently during chemo. Yesterday, I walked a 1.5 miles on the treadmill. This morning, I've already done a mile and hope to do a little more this afternoon. The weather here has been pretty yucky outside the last few days. I'm glad I can workout indoors on days like this.

gia44, I wonder if it's because you tumor was 1cm. Do you know if you will be getting another chemo after AC? It's true, we all seem to have slightly different treatment plans.

Welcome gia444 - sorry you have to be here, but its a great group of people here for support! I don't think it's the IDC as I have IDC and I did dose dense AC then DD taxol, and I'll start radiation tomorrow. I have no idea but there are so many different variables and each MO and treatment center is different. It seems all TN have AC and some have taxol and some have taxotere. Hope you're doing OK on AC aka "the red devil"! Hope everyone is having a great weekend - we got our Christmas Tree yesterday & I'm planning on decorating tree today and watching the Packers! I'm on vacation for two weeks - yippee! Not going anywhere and will have rads each day, but will still be nice to have some time off!

LanaM- I think AC (with or without Taxol) is becoming more common. I was diagnosed 3 years ago and given Taxotere and Cytoxan- no Adriamycin. It seems there were more of us that did TC back then. Treatments seem to differ from year to year!

Hello Everyone,

I haven't posted in ages, but have been checking in from time to time. This thread has been very helpful in understanding my experience after chemo. I too have different aches and pains, and I am not quite as worried as time goes on, because I have learned the chemo is hard on bones and joints. I have had a cat, bone and brain scan, all of which are clear. So for me, I need to try keep things in perspective. I pay attention to how I feel; energy level which has been good.,...

.I have had some issues with blood counts being low recently. In fact my reconstructive surgery was cancelled. my chemo was completed in August, so the Doc is scratching his head, which is surprising, because I found out it can take 18 mounths for counts to come back to normal.

I continue to battle some emotional issues, but am getting help for this. I try to stay busy, been doing tons of baking. Made my first ever homemade sweet rolls, and they turned out good....

Someone asked about dense breasts.....I had dense breasts, full of fibroids, I have been through the mill the past 15 years, soo many scares, biopsys which were always negative....until this time. That is why I opted for bilat mastectomy. Oh and my Doc told me his cancer was missed when I had a mammo a year prior to diagnosis. I actually palpated it, but by that time it was 3.8.

This is all life changing as you all know, but it is doable......

I hope everyone is having a good holiday.....