Calling all TNs
Comments
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Suze: I agree--curse all you want because BC sucks and sometimes it just helps. The good news-the surgery is over. You may need to do more chemo or you may need to only do radiation. It just depends on if they think they got it all and cleared the margins. Trust your onc and any suggestions he makes. Sorry this sucks and know we are all here for you. Big, big hugs!
Michelle: Glad you got through your first chemo without too bad a time. I was really angry, too. I was also really scared. Know that chemo is kicking cancer's ass and a year from now, hopefully it will no longer be so daunting. Hugs.
MonikaV: 700's!! Wow, you must be one hot mama! Kidding aside, I just downloaded our pictures from our lunch. I will have to "publish" it on FB so I can post it here. I am so happy you aren't in alot of pain. It was the easiest surgey of the two. Just don't try and do too much too soon. Gentle hugs.
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Thank you all so much. I am just lying here, not really sure how to feel. I always thought I'd have more than 4 nodes positive given how much cancer was in them, but I was hoping the chemo would clear them. We've always known the original size of my tumors, no surprise there, and at least I went from a total of almost 10 cms to 3 cms. My doctor will try and spin this well, I'm sure, and I don't know how much worse my prognosis is from her initial quote of 65-70% no recurrence. I will ask her. I'm pretty sure she'll give me a PET scan to see how it compares to my first one.
My BS said she was seeing more of her colleagues recommending adj chemo in these cases, that they see a benefit. I think I want to give this a chance, any benefit is worth it to me.
I will definitely be doing rads. Not sure of the order. I'd prefer to do them concurrently, but we'll see.
Thank you all for listening. I'll update when I know more, but I need to ake a break from here a bit. But I'll come back stronger, ready to fight.0 -
Suze: We're all in agreement here. As MBJ said, the surgery is done. The tumors are OUT. I don't know of any studies, but ask your onc what he suggests. Make sure he realizes you want to use the biggest guns possible to whip this thing. I'm so sorry to hear this news and my heart goes out to you.0
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Suze: I don't know of any studies, but if doing chemo again will help, I say go for it! You can ask Laurajane who also had to have it twice. We are all here for you when you are ready to pick up the fight.
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Hello all I am newly diagnosed. I need help as to what to really expect. I am 39 and have probably went to long undiagnosed but that is a whole other story. I am starting chemo this week for 6 months. Has anyone else had that long for chemo? What can I expect? When will my hair fall out? Does anyone know how long I may have had cancer? Thank you.
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Hi WonderGrant: So sorry you have to be here but I am glad that you found BCO and this thread. I did chemo for 5 months TC x 6 and it's doable. My hair fell out after 3 weeks, so I got my wig prior to starting and had it styled by the girl who cuts my hair to look like my hair. I tried to have fun with it and ended up with 4 wigs in different colors. It was like having the flu once every 3 weeks but we all react differently. It's impossible to know how long you have had it. TNBC grows very quickly. I know that I felt like crap for a year or more prior to my diagnosis. 5 years of health problems leading up to it. What type of chemo are they giving you, as there are a few different ones for us TN's?
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Ughhh for the last two years I have had several health problems and felt like I had zero energy to do anything. I do not know what kind of chemo I am getting yet, I will find out on Wed and get back to you then. I have to get a wig, I was hoping it wouldn't fall out so fast
Have you had any surgery yet?0 -
Sorry about the surgery question, I just read your info.
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Wondergrant: I was diagnosed with something called Adrenal Exhaustion 4 months prior to BC. I kept going from dr. to dr. and no one could tell me what was wrong with me. Chronic Fatigue is a symptom of Adrenal Exhaustion. I was under alot of stress with no relief or end in site and I just couldn't do it anymore. Turns out my hormones were also hugely out of wack. Still working on that.
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Hi Wondergrant. My hair fell out 2 weeks after my first chemo. Don't worry It will GROW BACK! Before you buy a wig. Look if your local hospital offers the "Look good feel better" Program. Its a one day class and they will give you a wig and lots of good make up for free.
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Wondergrant: Good Morning! So sorry to see you here, BUT it's the best place to be with this dx (IMO anyway). The ladies here are absolutely wonderful and we're here for you. My hair fell out on day 14 after chemo started, which is about the norm. I didn't shave it when it started, more from curiosity than anything. The only thing I can compare it to is when certain breeds of dogs "blow" their coat and the fur just comes out by handfuls as you brush or pull. I only had 4 rounds of TC, but you'll find many women on here that did 5-6 months worth! There are a couple different chemos they do, but several of us have had a Taxane and Cytoxan. Then there's a bunch who get Adriamycin, Cytoxan and then the Taxane (Taxol or Taxotere). I had surgery first, then chemo, and I remember the fear from that first notification telling me I had cancer. I was dx Sept. 2nd, bilat mx Oct. 7th, chemo began Nov 29th and ended Jan. 31st this year, and final surgeries (ooph and exchange) Feb. 28th. Prior to my dx, I'd had 4 YEARS of extreme stress (we're talking 3 close family members dying, moving 3 times, divorce, pregnancy, family disowning, older kid flipping car, and more). The beginning of 2010, my stress wasn't any better... my sig. other and I split (back together now). I became very sick from March to June, and we're still watching the result from that illness (lung nodules we believe are histoplasmosis). Then I was dx in Sept. My feeling about cancer is that, although stress in and of itself may not cause cancer, it certainly helps bring illness on which in turn lowers your ability to fight off infections/disease.
I'm BRCA2+, so I went through more surgery than you might have to do. I got a wig prior to hair falling out, attended the Look Good, Feel Better class by the Am Cancer Soc, but never wore my wig! I decided to just wear hats. I had Taxotere, and was concerned about hair growing back (this is the one type of chemo that does carry a very small risk of permanent hair loss, but my onc has never seen it happen). I'm now 6 weeks pfc and it's growing! A lot of women request Taxol instead of Taxotere, however Taxol carries a greater risk of neuropathy and each really has their own set of pros and cons. Chemo itself, the actual infusion, isn't that big a deal. The days that follow is when you have your side effects, so make sure to take your meds and read up on other threads here which will give you wonderful tips on what else you can do to make it an easier ride.
Feel free to vent here and ask us whatever comes to mind.
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Prior to being dx'ed I too lived on the STRESS roller coaster, but NOT anymore. I have learned to let other people PROBLEMS belong to them.
Since being dx'ed and treated I feel so much better.
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Hi Triple Pink Sisters,
Wanted to let you know about a teleconference on Triple Negative: Medical Update and Treatments, presenter Dr. Carey, Univ of NC, Dept of Med, Hematology and Oncology ...
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Welcome Wondergrant. When you know what your tx plans are, you can be sure someone here has done the same. It really helps to meet others who have or are going through the same thing.
Titan/Husker - so, is the Big Ten still going to be called the Big Ten? I'm a Purdue spouse.
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Nothing really new here:
Should Liver Metastases of Breast Cancer Be Biopsied to Improve Treatment Choice?
Ann Oncol. 2011 Feb 22;[Epub Ahead of Print], G Curigliano, V Bagnardi, G Viale, L Fumagalli, N Rotmensz, G Aurilio, M Locatelli, G Pruneri, S Giudici, M Bellomi, P Della Vigna, L Monfardini, F Orsi, F Nolè, E Munzone, A Goldhirsch
Receptor status may differ between the primary tumor and metastases, requiring changes in therapy; thus, biopsy of metastatic lesions should be considered whenever possible.
TAKE-HOME MESSAGEReceptor status may differ between the primary tumor and metastases, requiring changes in therapy; thus, biopsy of metastatic lesions should be considered whenever possible.SUMMARYOncologySTAT Editorial TeamFor patients with breast cancer, biopsy of metastases to determine biologic features is not routinely recommended. Consequently, treatment decisions for metastatic breast cancer are made based on the biologic features of the primary tumor, including estrogen receptor (ER), progesterone receptor (PgR), and human epidermal growth factor receptor 2 (HER2) status. Since biologic features can change between the primary and secondary tumors, the routine biopsy of metastatic disease needs to be explored. Curigliano et al evaluated the occurrence of ER, PgR, and HER2 discordance between liver metastases of breast cancer and the primary tumor, and the effect of a discordance on treatment of the metastatic disease. Using the database of Milan’s European Institute of Oncology, they identified 255 patients with breast cancer with liver metastases diagnosed between 1999 and 2009 who had matched primary tumor and liver tissue samples available for determining biologic features.Of these 255 patients, 37 (14.5%) had a change in ER status: 15 of 58 (25.9%) went from ER negative to positive, and 22 of 197 (11.2%) changed from ER positive to negative. Changes in PgR status were seen in 124 patients (48.6%): 18 of 91 (19.8%) changed from PgR negative to positive, and 106 of 164 (64.6%) from PgR positive to negative. For HER2, 24 of 172 patients (13.9%) had a change in status: 7 of 118 patients (5.9%) went from HER2 negative to positive, and 17 of 54 (31.5%) from HER2 positive to negative.The discordance rate was determined in patients for whom ER and HER2 status were both assessed at the Milan institute. To reduce interlaboratory variability, all discordant cases were reviewed centrally using the same staining technique. ER status changed in 18 of 153 (13.3%) evaluable patients, whereas HER2 changed in 15 of 90 patients (14.3%). Changes in HER2 from negative to positive were significantly associated with a decrease in ER expression, suggesting cross talk between the ER and HER2 pathways.Discordance between primary tumors and liver metastases led to changes in endocrine therapy (ET) and/or biologic therapy in 31 of the 255 patients (12.1%). Discordance in ER or PgR receptor status led to a change in ET in 21 of 37 patients (56.8%), whereas 77 of 183 (42.1%) of patients who were concordant either changed ET or started chemotherapy. When ER/PgR status went from positive to negative, 65% of patients stopped ET; when the change was from negative to positive, 18% started ET.Of the 20 patients with a discordance in HER2 status, 10 (50%) saw a change in immunotherapy (trastuzumab) after liver biopsy, compared with 24 of 116 (20.7%) patients who were concordant. When HER2 status changed from positive to negative, 2 of 14 patients (14%) stopped trastuzumab and 2 continued it with another chemotherapy agent. All 6 patients who went from HER2 negative to positive received trastuzumab after liver biopsy.With discordance rates for ER, PgR, and HER2 of 14.5%, 48.6%, and 13.9%, respectively, in this study, the authors believe physicians should routinely reassess the biology of metastatic disease. Obstacles include lack of resources, technical difficulties, and reluctance to perform an invasive procedure in patients with advanced disease. Thus, clinical judgment remains important, with the final decision made jointly by the patient and physician.Since a discordance between the primary and metastatic lesions can lead to changes in therapy, biopsy of the metastatic lesion should be considered for all patients, when it is safe for the patient and easy to perform, the authors concluded.Abstract
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Cherry Blossom Update/Info:
The National Cherry Blossom Festival's Online Auction Opens; Portion of Proceeds Designated to Japan Relief Fund
Starting today, the National Cherry Blossom Festival Inc., a 501(c)(3) not-for-profit organization that produces the nation's greatest springtime celebration, will hold an online auction. Each year, the Festival celebrates the gift of 3,000 cherry blossom trees and enduring friendship between the United States and Japan with 16 days of events and programs, primarily free and open to the public.
As we continue to honor the relationship between our two countries, and in this great time of need, a portion of the proceeds generated from the auction will go to the Red Cross and their Japan Earthquake and Pacific Tsunami fund. Proceeds generated will also support the Festival in its mission dedicated to promoting the beauty of nature and international friendship through year-round programs, events, and educational initiatives that enhance our environment, showcase arts and culture, and build community spirit.
Bid on one-of-a-kind items for a great cause. Check the auction website often, as new items are added regularly. Your support is invaluable.http://www.biddingforgood.com/auction/AuctionHome.action?auctionId=124643662
The National Cherry Blossom Festival is Washington DC's and the nation's greatest springtime celebration. The 2011 Festival, March 26 - April 10, includes three spectacular weekends and daily events featuring diverse and creative programming promoting traditional and contemporary arts and culture, natural beauty, and community spirit. The 2011 Festival commemorates the 99th anniversary of the gift of the cherry blossom trees and the enduring friendship between the United States and Japan.
Contributions to the National Cherry Blossom Festival are tax deductible to the extent allowed by law. More about the Festival
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Wondergrant:
Welcome, sorry it has to be under these conditions; however, it seems as though none of us were asked if we wanted to join this club. We come in all ages, sizes and colors, races, etc., but share a very deep and common bond that only we can share and that is the strong desire to live and to give each other strength and courage in going through what we have to in order to achieve that goal.
I want to wish you a gentle and very productive journey as you move on with your treatment plan, and know that you will never be alone throughout it - ever. Someone is always on this thread, no matter day or night, to send out cyber arms for a hug if needed, to wipe tears from your cheeks, to answer any question and most importantly - to always know exactly what you are feeling and why you are feeling it. There just is not another, no matter how much they love you, unless they have walked in your shoes - no one will ever understand your joys, fears or wishes, as much as we will.
Godspeed, Wondergrant - you can win this fight.
Linda
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Ladies-something for all of us:
http://lbbc.org/Events/2011-4-26-TNBC-Fear-of-Recurrence?tr=y&auid=7922272
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wow ladies you girls have great advice and boy oh boy can you chat lol took me 15 to catch up. dont have much time right now just making dinner for everyone but thank you to all of you. Your all right I can and I will do this. Loosing our hair does suck....just plain and simple it friggin sucks. But being able to kiss our kids is worth it....SO WORTH IT.... so I will have a little drinkie poo tonight should be enough time for it to clear out but thurday so the liver is ready to go lol and I will just put one foot in front of the other and if I cry I will just try really hard not to slip on my tears while I am doing that.
I have 6 sessions to get through not 4 I am doing FEC-D. But you guys are right once I get the first one done I am on my way to being finished and I refuse for this damn disease to haunt my life forever.
wish I could catch up with all of you personally so sorry but in a hurry and just wanted to come on and say thank you and thinking of your. Husk we will get through st patty day together big hug
Kymn
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MBJ - waiting for u to come home!!
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Gee thanks for the link Heidi...the teleconference is on my birthday. I'm looking forward to the Cherry Blossoms!!!
Kymn enoy your drink tonight!
Welcome Wondergrant.
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Speaking of drinking...(and you guys know I like to do that)...I remember my first day of chemo well....they did the blood tests and my liver came back perfectly healthy...I was so relieved..I focused on that rather than the chemo..dumb..maybe.. but I had to focus on something.
Wondergrant..I wouldn't freak out too much about how long you had BC. Most of us "Triple Pink" sisters (I kinda like that Rachelle)..found their tumors themselves in between mammos...or like you younger ladies..didn't even have a mammo at all..I bet you didn't have it very long at all...I had a mammo on August (clean), found the lump in January..and yes..felt like crap those months also..the only way I can describe it as just feeling BLAH....\
Heidi..thanks for the conference info..I just may sign up for that..
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I *don't* like the triple pink but respect those who do. I hate the pink. whatever....I found my lump myself, but it was clearly on my most recent mammogram as a spot. Makes you wonder.
And I like drinking more than most of you
Cheers to the Captain!!!! Everything in moderation is ok in my book. 0 -
Kymn,
I am ready to do this chemo thing, and glad someone is "there" with me. I have six sessions also, but a little different mix of drugs. I like the idea of counting down so we start at six, then have five, four (you get the picture). HUGS, HUGS! We can do this!
Still haven't done the wig-shopping thing. Trying to figure out when, but it will probably have to be next week. I could also do Friday if the chemo doesn't overwhelm me that day. Onc says i'll be fine. Well, sure, I will but can I skip work to go get a wig if I'm fine? Not sure if that fits "sick leave", but...
I will have a Bailey's tonight before I go to bed. It seems appropriate for St. Patrick's Day, doesn't it?! My mom is buying me a 4-leaf clover to go on my Pandora bracelet and then I will get one for each chemo treatment. I think Maria (mdg) had that idea-although I think she is doing the stacking rings-and I like it. Doing something for me. And who doesn't love jewelry?
Thanks to all for your support and funny comments and sharing the down times too. I appreciate going through this horrid disease with others who KNOW what I'm going through. Not just saying the words.
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Hi everyone. I am a bit out of it from surgery today, but it went well and they lipo'd the hell out of my mid section, so I better weigh myself quick before it comes back, lol. I can't shower for a week, which really sucks, and I won't know until my appointment Monday what it looks like. They used a skin graft from my bikini area which won't show in a swimsuit or underwear and it also can't be rubbed by fabric. So, I am pretty bruised up and sore and now I am going to take a Vicodin and go to sleep. Good night all!
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MBJ FEEL BETTER SOON > (((((HUGS)))))
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MBJ - Feel better!
Wondergrant - I'm so sorry to have to welcome you, but these women are wonderful and so supportive, I'm glad you found us.
So, we are forming a game plan. My oncologist agreed that we needed to do more chemo, and she thinks Cisplatinum is the way to go, coupled with possibly Gemzar. She is going to consult with the tumor board and determine that. She wants me to do 4 months, then take a break to do my radiation, then follow up with 2 more months. She is also going to push harder to get me Avastin, as she really thinks it would help me. Unfortunately (this is going to sound awful), my DH's salary is too high for the drug company's free program. But she's going to try again with everyone and see.
I'm putting a lot of chemicals in my body, in the hope that it pays off. I've seen women on this board with my circumstances who are fine 3+ years out, so I know it can be done. Some did chemo twice, some didn't. If almost a year of chemo doesn't do the trick, well, then I will have to accept that this damn disease was just too much for me.
I'm having a PET scan in the next few weeks to make sure I'm still clear, and will start with chemo again the first week of April. I have a different mind set this time around, and will approach feeling like crap as best as I can.
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Suze- Sending strenght and courage your way to continue fighting this ugly beast. You can do this!
We are all here for you.((((( BIG HUGS)))))
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Suze - your mindset is good and so is your attitude. ((((hugs))))
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