Calling all TNs

Lana, When I want to kick butt on anything or anybody, I give it all I've got. For me, that was mx, chemo, and rads. Nearly three years since dx, doing fine. Best wishes as you come to making your decisions. Jan

simple life - congrats on completing the taxol - that is indeed a milestone! I hated taxol - it was not a kind treatment for me - lots of joint aches and pains and pins and needles. Did you get any neuropathy at all? AC is no picnic in the park either, but with proper ant-nausea meds, it is OK. Did you lose your hair with taxol? Rest up for the next couple of weeks in preparation for the next stage of treatment.

Lana, Back in 2009 the standard of care was 4 pos. nodes or more == radiation.  3 nodes ore less  NO radiation.  So I did not get rads.  BUT I always wished I could have had it.  But of course, hind sight is 20/20 and I am doing well.  My reconstruction after BMX has been a piece of cake with good results.  You certainly have an important decision to make.  If I had to do it all over again, I would do the rads.....I think it would have given me a little more piece of mind in those early days.  After you do your research on the pros and cons, follow your gut....its your body and your life!  As someone else said, there is no right or wrong choice....

Andrea, welcome to the boards. The ladies (and men) on here are amazing. So many of my questions were answered, fears and rants listened to, and much hope given. And there is quite a bit of humor on here as well, which we can all use! I know it seems as if time may be wasting, but the tests are needed . I had a full 2 weeks of testing, then had a port put in immediately following. Chemo was started right after port, dd AC/T. In my opinion, there are many associations posed with cancer, but I think every one's cancer is unique in a way. The answers are not always clear cut, so even though reducing sugars and carbs will help with overall health and possibly cancer, don't get too hung up on it. Enjoy a treat every now and then. Life is meant to be enjoyed - moderation is my way.

I am pleased to see so many of you reaching milestones! It has given me much hope for my future. In 10 days I'll have surgery again, free flap with wide skin excision. How was recovery for those of you who had this type of surgery. I have to admit, i'm feeeling quite apprehensive.

Slowloris...I had diep last year...then left side replaced with gap flap.  My diep recovery went relatively well..the gap not so much. My next go round is on the 4th, I am now in the revision stage.  6th surgery with same doc.  I trust her completely.  The complications I have had were quite unique to me.  Pm if you want more personal info,  I am happy to share my experience.

Maggie

Andrea, I'm sorry that you are having to go through this experience, but I'm glad you found this site and this thread. I felt the same way you did when I was first diagnosed in July. I wanted that thing outta there and quick! Going through all the testing seems to take forever! I felt much better once they had come up with a treatment plan and explained it all to me. There is a lot of good information at the TNBCfoundation.org site.

Jianchi, I also have been hooked up with a TNBC cancer buddy through Vanderbilt's Hope program. She is 6 years out and disease free. It gave me great hope to talk to her the first time. We live pretty far apart, so it's unlikely we will meet in person, but I like to talk to her about once every couple of weeks now. We are gradually getting to know each other through phone conversations. Just knowing she has made it though through first few years lifts me up.

I had a rough evening tonight. I was hoping I would escape my usual steroid crash (complete with uncontrollable sobbing) after my final taxol infusion this week, but I did not. It came on fast and hard around 5pm tonight. My husband found me in a heap on the basement couch and got me to crawl into bed. Fortunately, I was able to fall off to sleep pretty quickly. It's about midnight now, I just woke up a few minutes ago and seem to be back to normal. I hate those crashes. They are a true nightmare for me. I have a two week break before I start AC. I'm wondering if I will have to go through the same thing with each infusion of AC. At least there are only four of them.

Kay

Anybody on propranolol? They put me on it while I was on abraxane and avastin because my blood pressure and heart rate sky rocketed. Now my doc thinks the medicine is why I am so tired so she took me off of it. Now I am having anxiety and rapid heart rate again. I now remembered that propranolol has shown promise in keeping recurrence away, so now I am thinking I should not have stopped it. Any thoughts? Anybody ever heard of the benefit of being on it?

Where is stupidboob? We miss you and hope everything is ok!

I feel for you all that are doing chemo and rads right now. It seems like forever while it is going on and oned day you will look back and think-wow, that went by fast!

hi bak94, i saw that your two diagnosis are 9 years apart, and are both TN, is the second one a come back? Thanks!

KSmatthews, I just moved to Crossville (from the Chicago area) a month before I got diagnosed, so I don't really know very many people here. We had just retired and had moved to Tennessee for our "golden years"....hah! Boy, was I in for a shock with getting TNBC. If you are ever in Crossville and want to drop by, I'd love to meet. We live right in town.

BAK, propranolol (or any heart medication ending in "olol") is a beta blocker. Beta blockers seem to help increase survival times in women taking them that have BC. http://www.ncbi.nlm.nih.gov/pubmed/21632503 If I ever need them for heart reasons, I would be all over it. They do keep your heart rate lowered so they can make you feel tired so I can understand why your doc thought they might be causing you to feel tired.

Along a similar vein, there is a small study that indicates that statins may help protect the heart from damage from Adriamycin chemo. http://www.breastcancer.org/research-news/20130114-3. I actually asked my MO if I could take a statin for this reason. She said yes. I have hyperlipidema that my MO thinks is chemo induced since it is new. I will be starting AC in a week, so I'm starting the statin this week to get it into my system before the AC. I had mixed feelings about doing this because before this all started, I took as few drugs as possible. I used to work as an RN in cardiology so I'm super aware of heart issues.

Finally, this information about study on a BC vaccine that may help with TNBC was posted over on the TNBCfoundation.org site today. http://www.thealmagest.com/cleveland-clinic-innovations-creates-spin-company-develop-vaccine-preventing-breast-cancer/4019. It makes me sad that it will likely be years in the making and not be of any help to us dealing with the disease right now, but it could possibly be a game changer for TNBC down the road.

I feel like it's taken me a good 48 hours to recover from my last steroid crash from taxol. My treatments are not only hard on me, but on my husband as well. I feel badly about how hard I have been to be around these last few days. My husband has been very patient with me, but I have not been easy to live with. I really want to figure out a way to somehow make it up to him. The last thing I need right now is to alienate him and that's what I've done over the last few days. He's a really good guy. I need to remember how hard it is to be a caregiver. I forget that sometimes when I'm in the midst of my own emotional turmoil.

Kay

Ladies have any of you who had bmx ever had shoulder pain afterward? Wife has been complaining of shoulder pain for a while in the shoulder opposite her cancer site. She says it feels like it's joint pain. I welcome anyone's thoughts.

Alhusband...has she seen the doc for it? For me I had terrible pain and cording in both arms even though the left side had alot more lymph nodes removed. The rule for seeing the doc is a pain that does not go away within 2 weeks. It may be as simple as seeing a physical therapist to help with range of motion in both the arms and shoulders. Just be sure if any lymphs were taken out that they know how to take precautions for lymphedema. She def does not need nor want that! Hope you can get some answers and it stops hurting

Maggie

Haven't posted in here for *forever*, and probably won't be checking in again anytime soon. I have SO moved on from TNBC. Titan & I chat on Facebook from time to time and share kitty stories. Some of you old timers in here may remember that I was an active horseman... and still am. In fact, I am now heavily involved in a national carriage organization and am one of their regional directors. So, still living an active life, sailing, traveling and carriage driving my horses.

About the only thing that has changed is that I developed a terrible cough that took forever to figure out (Google neurogenic cough... it's weird) and scared my oncologist. Also have a crappy hip that I am going to get injected next week... this also scared my onc, since TNBC can recur in bones. Best part is.... I am far enough out from my diagnosis that I didn't even *worry* the cough and hip might be mets.

So, it's been 4 years since my dx and, other than the above mentioned issues, I'm still moving forward (and away) from that nasty 24/7 fear we all live with for much of our early treatment phase. Now, seriously, I almost never think of BC, and when I do, I find the experience so foreign that I have to remind myself that I was, in fact, one of its "victims".

Works for me... no more nasty thoughts taking up brain space!

Best to all!

Hi Bak, thank you for the reply! I wish you all the best in your treatment!

I am heading off to my second chemo tomorrow morning. Yesterday and today, I have been experiencing some strange taste change in my mouth ( a bit bitter feel). My skull feels a bit strange too. Oh well, time for the hair to fall I guess. I will have to face it any way.

Take care you all!