Calling all TNs

Suze35

Titan - oh I'd take plain old gas in a heartbeat!! I swear if this scan comes back clear, I will stay away from the MRI machine for at least 3 months, lol. Unfortunately, I have a bad feeling about this one...too many symptoms, not enough options. Sigh, each day is an adventure.



Kimn - stay on top of anything different going on. If you are concerned that your tumor isn't getting smaller, push for an MRI. Don't let them put you off. I let myself be placated at the end, and should have pushed harder to move my surgery up. But mets while on chemo that can cause pain would be very rare - and chemo plus Neulasta really messes with your body. I'm sure what you are feeling is very "normal." Just be vigilant and you will be okay. Only 2 more to go!!!

Suze35

Heidi - I should have "Titanic" tattooed on my chest, lolol. You find the best pictures!

OBXK

MBJ -Last week, I had to stop at treatment 5 of 6, due to neuropathy. Always something!

Wishing you well, Karen

ksmatthews

Kymn- Just stay positive.  Also I was told to stay off the internet unless you are on cancer.org or breastcancer.org.   Too much false info out there.  good luck stay strong!

Suze35

So I have a start date, and a chemo combo - yay! 

My doctor isn't convinced I'm having issues with my liver - the pain I pointed out to her is too high.  She also couldn't feel my liver at all when checking it, so it isn't swollen.  She is leaning towards scar tissue - huh, wha?  But I'd take that!  Anyway, she ordered a CT from neck to pelvis because she does want to check everything anyway, including my lungs.  That should be tomorrow most likely.  I'll know about my blood work by the end of the day.

She is also having my original tumor checked for EGFR, and one other (can't remember the name) but she said both have more targeted drugs that would be helpful even if I do progress.  Because my pathology is at Mass General, she said it will be easy to get it done.

On June 20 (my birthday, yay me) I will start Xeloda with Avastin, and we will add in Iexmpra on June 27.  It is very aggressive - and I appreciate this.  Her rational was solid - we both see where this is heading, but she is in the camp that if we catch it very early Stage IV, and hit the right chemo combo, it can put me into remission for a long time, and dare I say it, maybe for good.  Studies are showing that treating aggressively initially with Stage IV is improving survival benefit.  I'll take all I can get.

Will keep you posted about my scans!  I'm not convinced it is as simple as scar tissue, but whatever.  I'll know soon enough.

Fighter_34

This dx is very complicated, confusing, and unforgiving. 

Luah

Suze: It sounds like you are in excellent hands! Kudos to your docs.

Fighter_34

Suze35 you are in good hands. Fight hard and take care of yourself. We are here when you need to vent.

Dare I say treating aggressively at any point w/ TN is the best approach.

Sugar77

Suze - sounds like a good plan for your treatment. Fingers crossed the scans show nothing!!!

Sugar77

Here's a link to a good brochure all about TNBC.  I found it interesting and learned a few new things...

http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf

swiftbird

Hi ladies, been lurking a bit lately but following the trials and tribulations of our TN sisters.  Last year, tomorrow, was my last and final chemo treatment.  The date burned into my brain.  I just kept thinking all those months: If I can just suck it up until that LAST round... So for you ladies in the midst of it, or starting your chemo journey, it ain't no picnic, but hang in there!!  

kathrynn: I also had neoadjuvant chemo and wasn't every really staged - fortunately because the chemo shrunk my tumor to nothing dead cells by the time surgery came around.  I too had whirlwind diagnosis/treatment plan; was at the Mayo, and they got quickly to the business of gathering data and resources, conferencing my case clinic-wide (I had a somewhat (in)famous badboob for awhile), and keeping me so busy but reassured that the time went quickly. That helped, or at least helped me.  You're at a great facility! 

kymn:  I too worked through chemo, which kept me from sitting at home and overthinking it (my tendency).  Some nurses questioned me about keeping up full work (& travel) schedule; actually made me question myself! But my rockstar onc pointed out that, being young (as we both are), we can tolerate chemo probably a little better than an older BC (mostly non TN) counterparts - so encouraged me on doing what I felt I could do.  I didn't always feel like clicking my heels down my firm's hallways, but it was good to have the routine and keep my mind busy.  Although I admit, some days, I would sit in front of my laptop screen, guzzling gatorade, deep in my chemobrain fog   

I see pictures of myself from a year ago, rocking a Michelle Obama-ish wig, and I thinking, wow, absent the non-existent eyelashes and brows, you can't even tell I was sick and tired. But I was. Was I in denial? Maybe a little. But getting up, working, getting dressed up, helped me cope and feel occasionally 'normal.' (with, of course, the help of miralax, the miracle drug) LOL 

Best wishes to you all for a SE free week. 

MBJ

Suze:  I love your dr's and I am glad you now have a plan.  Hoping your scans are all clear and you can move forward!  Hugs!

Lynn18

Suze35:  Your doctor sounds smart--we do need to be very aggressive with TN.  I like her plan.  I am sending you positive thoughts for clear scans.  

Kymn

Hi ladies,

Swift bird thank you for the encouragment. I have wanted to give up and stop at 4 treatments instead of doing all 6.I just hate the depression and sickness and I want my hair back damn it. I want my life back. I am today sitting here at work very tired but your right if I was home the whole time I would prolly be deeper in depression than I already am. I do tend to over think.Although there are certainly days when I really dont want to get my lazy butt out of bed.

I had my tumour removed so I am not worried about it growing but was just wondering if cancer can grow somewhere else during chemo. I am guessing yes ? Was just curious I wasnt sure.

christina1961

McCrimmon324,

I'm sorry it took so long to see your post - please feel free to PM me anytime you want - I just had my fifth TAC treatment on the 23rd with one more to go.  My side effects have been mostly limited to 6-7 days following the infusion. I am self employed so I usually go back to work full time about day 7 and work every day including weekends until the next treatment.  I shaved my head before treatment and it hasn't grown back at all except tiny stubble.  The chemo has caused a lot of stomach upset - acid reflux (I'm on 3-4 prilosec daily now) and nausea - (for about a week) - I take Zofran every 8 hours when it is bad.  I've had numb fingers on my left hand only - no problems with feet or right hand.  Days 3-4 I am extremely weak - usually there is one day I miss a shower.  I've had some facial tingling that goes away - and hot flashes - I'm in "chemopause" at 50 after regular periods before treatment.  This last time I had some minor skin bumps come up about Day 8.  It is very hard, but necessary - but it is also definitely doable. 

Stupidboob, I get neulasta - it causes bone pain for me so I take hydrocodone for about six days each cycle (just 1/2 tablets x 4 daily) and I'm fine. It has definitely helped my counts even though I've gotten low 3 times but bounce back more quickly.

Welcome, umater, blondelawyer, and rella40.  I'm sorry you have to be here, but you'll find a lot of information and support from all these wonderful women.

christina1961

Suze35,

I hope everything goes well for you - and it sounds like you are in excellent hands with your doctor.  Please let us know as soon as you hear something on your MRI.

mccrimmon324

christina1961 - Thank you for the reply.  I still don't have a start date but my oncologist appt is Friday along with my "chemo" class.  Did you drink alot of water and exercise on the days that you could?  I'm surprised you have stubble, I thought TAC was so aggressive it would take a long time before anything would sprout.  I'm really nervous about my hair, I know it's going to happen and I know that it's going to grow back I'm just terrified of my reaction when the time comes to shave my head.  I have such anxiety, I'm afraid I'm going to have a meltdown.  That this is going to become "real" for me.  Thankfully, dr is giving me xanax, seeing a therapist on Friday as well, and I'm looking for some anti-depressants too.  I know I sound a bit crazy I just think it will help with the stress of everything. 

TiffanyF4

rella40- you sound like an amazing women! You have found the right place......welcome!

Anonymous

Interesting read...

Two Studies Find Beta-Blockers Help Combat Breast Cancer Progression and Metastasis

Elsevier Global Medical News. 2011 May 31, J Smith

Beta-blockers - safe and inexpensive drugs used for 4 decades in the management of cardiovascular disease - have shown surprising promise in inhibiting breast cancer progression and metastasis.Two retrospective observational studies, published May 31 in Journal of Clinical Oncology, offer the latest evidence that the drugs, which have a role in neuroendocrine signaling pathways, lower the risk of recurrence, metastasis, and cancer-specific mortality.In an editorial comment (doi:10.1200/JCO.2011.35.8820) accompanying the articles, Dr. Patricia A. Ganz and Steven W. Cole, Ph.D., both of the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles, wrote that the findings raised "the intriguing possibility" that these and other agents targeted to other diseases might provide "previously unappreciated opportunities for therapeutic control of disease progression, metastasis, and disease recurrence." Because of this, they argued, future clinical treatment trials should "endeavor to collect prospective data on relevant medication exposures, weight and weight gain, comorbid conditions, and behaviors that have the potential to influence the microenvironment of the tumor, as these may be potent mediators of prognosis and survival, and may or may not be effectively accounted for in randomization."In both studies, women with breast cancer prescribed beta-blockers for hypertension and other cardiovascular conditions were compared with women not taking the drugs. For the first study (doi:10.1200/JCO.2010.33.5422), Thomas I. Barron, Ph.D., of Trinity College Dublin and his colleagues used linked data from an Irish national tumor registry and a pharmacy database to set up a case-control comparison of women prescribed the beta-blockers propranolol (n = 70) or atenolol (n = 525) in the year before and after their breast cancer diagnoses. These women were matched 1:2 to 4,738 women not prescribed beta-blockers, with matching inclusive of age, socioeconomic status, tumor grade and stage, and comorbidities. After a median follow-up period of 3.5 years for the propranolol group and controls and slightly less than 3 years for the atenolol group and controls, the investigators found significant reductions in tumor size and nodal or metastatic distribution for the propranolol users, but not for the atenolol users. The cumulative probability of breast cancer-specific mortality was significantly lower among propranolol users (HR, 0.19). Propranolol users were also significantly less likely to present with a T4 (OR, 0.24) or N2/N3/M1 (OR, 0.20) tumor compared with matched controls. However, the atenolol group saw neither a significant reduction in breast-cancer specific mortality nor a difference in T4 or N2/N3/M1 tumor incidence from the matched controls.In the second study (doi:10.1200/JCO.2010.33.4441), Dr. Amal Melhem-Bertrandt of the M.D. Anderson Cancer Center at the University of Texas, Houston, and colleagues identified 1,413 patients treated for breast cancer in a 12-year period, comparing those with (n = 102) and without (n = 1,311) concurrent beta-blocker exposure for a pathologic complete response, relapse-free survival, and overall survival. Mean follow-up was 55 months in the beta-blocker group and 63 months in the nonuser group.The investigators saw no difference in pathologic response for those taking beta-blockers; however, after adjustment for variables including age, race, and tumor grade, women on beta-blockers showed significantly greater relapse-free survival (HR, 0.52; P = .015) and a trend toward greater overall survival that did not reach statistical significance (HR, 0.64; P = .09). In a triple-negative subgroup (n = 377), the investigators found significant effects for beta-blocker use on relapse-free (HR, 0.30; P = .03) but not overall survival (HR, 0.35; P = .05) after adjustment.In their editorial, Dr. Ganz and Dr. Cole noted that the findings from the second study, in which most of the beta-blockers were the beta-1-selective agents metoprolol (42% of patients) followed by atenolol (37%), would seem to contradict Dr. Barron and his colleagues' findings, in which only propranolol, which inhibits both beta 1 and beta 2, had a significant effect. However, they wrote, "Neither metoprolol or atenolol is totally beta-1 specific; both partially inhibit beta-2-adrenergic receptors as well." The editorialists noted that the new findings build on recent animal work indicating that beta-adrenergic receptors affect breast tumor growth and metastasis, and also on a 2010 U.K. retrospective study (n = 466) that was the first to look at a variety of antihypertensive agents in women with breast cancer. It found that women treated simultaneously with beta-blockers had a 57% reduced risk of metastasis compared with breast cancer patients receiving either other types of antihypertensive drugs or no antihypertensive drugs. Women on beta-blockers also saw 71% less cancer-specific mortality after 10 years (Oncotarget 2010; 1: 628-38). "Beta-adrenergic signaling appears to have little effect on the biologic processes involved in breast cancer initiation, but more strongly affects the biologic processes involved in the subsequent progression and metastasis of incipient tumors. Given these results from the laboratory, and the clinical results from three recent retrospective reports suggesting the potential to limit recurrence of incident tumors, perhaps it is time to consider proof-of-concept trials testing the value of [beta-blockers] in the setting of breast cancer," Dr. Ganz and Dr. Cole wrote.Dr. Barron and his colleagues declared that they had no financial disclosures relevant to their study, which was funded by the Irish government. Dr. Melhem-Bertrandt and colleagues said they had no financial disclosures relevant to their study, which was supported by a grant from the National Institutes of Health. Dr. Ganz and Dr. Cole, who were supported by the Breast Cancer Research Foundation, the Jonsson Comprehensive Cancer Center Foundation, Susan G. Komen for the Cure, and the National Cancer Institute, also declared that they had no relevant financial disclosures.

TiffanyF4

Well crap!! Just went for a follow up with my surgeon today. He found a small lump on top of some scar tissue. She asked me to stay and have it removed. So I did and won't have the pathology back until next week on the 8th. Not jumping into panic mode but I HATE waiting for results!!! Grrrrr!

hydeskate

Learned a valuable lesson, I am way out of shape playing two kickball games at the hotest time of the with a heat index of 102...atleast we won the tournament having to play the stacked team first and out scoring the other three teams 12-4... I don't think I will make it out of my lazy boy...at least it kept my mind of my upcoming scan on the 14th of all days on my birthday...better be a good present...lol

riley702

Wow, that's exciting, Heidi! I wonder if I could get my doc to prescribe me some Inderal (propranolol) even though my blood pressure is fine.

That sucks, Tiffany. I had found a BB-sized bump on my incision line, too. My BS immediately did an US and said it was just a bubble of fluid trapped in the scar tissue, probably from my post-op seroma. Crossing my fingers for you!

MBJ

tiffany:  I hate when they make you wait!  I hope it isn't anything!!!

tracie23

OK Ladies... tomorrow is the day.... I am having TE surgery , ooph and port removal. I am very nervous and scared so please keep me in your prayers over the next few days. Hugs to everyone.

OBXK

Blondelawyer - yes, I live in NC. I am about 60 miles inland, but have a beach house in Rodanthe, on Hatteras Island. I was just there, and it was the perfect beach weekend. You should have seem me, white as milk, in a skirted swimsuit with a shirt over the top, gardening hat and my dad's old fit - over sunglasses. It's a wonder my boys would be seen with me!

What part of NC did you live in? Karen

OBXK

Tracie - I hope all goes well and that you have a speedy recovery.

Wishing you well, Karen

blondelawyer

Karen--I lived in Winston-Salem for a year and then spent 3 years in Raleigh (I went to UNC Chapel Hill for law school). We would go to the outer banks often for weekend trips.  It is so beautiful there!

Titan

You ladies living in the Carolinas!  Lucky you!  My family has vacationed at Hilton Head for many years..I love Hilton Head...we were there b-4 all the tourists (HA HA)..came..I can't think of anywhere else I would like to live..If and when we retire we would like to live in South Carolina....I feel so at home there...

Oh Tracie..good luck to you..will be thinking about you all day...love ya sweetie!  

Hey Hydeskate..you WON...even though it was hot..you go girl! 

You know what..every time I hear that word  LUMP..I just totally freak..lump is a 4 letter word...it is such an ugly little word..

rella40

hi girls, just wanted to give everyone a (((hug))) and tell you that you are all in my prayers.

TiffanyF4 thanks for the welcome, and I am glad your doctor is on top of things, that is a key in this tn business I think.  And yes waiting is TERRIBLE!!!

 HeidiToo very interesting article, I am a reader/researcher, so I take it all in, will ask my mo about some of the things I have read on this site.  What a great place this is!!

Hydeskate way to go girl! I love it. I had a brief moment of fuel this afternoon and got about 1/2 of my small barn cleaned up and organized before I ran out of steam.  Beautiful but windy day here.

Stupidboob

Hey Gang,
 Not used to the board yet so I am just hitting reply as I don't know how to start a new subject, can't find a button.   I wanted to say thanks for the warm welcomes the other day and I apologize for not answering before now.   I forgot who said it but Shitty Titty was one of my sayings too.   I did have several people in person (a couple here) tell me not to blame the boob.  It was not really blaming the boob just dealing with the situation.  I would have said stupid leg had it been my leg....:).   Stupid Boob just stuck.   Anyways, I should have been in the bed long ago but can't sleep right now as tomorrow is the big day and I am TERRIFIED!!!   I start A/C and any tips to help ease some of my anxiety would sure be welcomed.   I am scared I will be one of the horror stories I keep reading about, with having to be taken to the ER, dying right there on the chemo floor and etc.   It is not bad enough to know the side-effects we are going to have from it in the days to come, but the horror stories sure make you want to not do it.  Hubby says I will be hog tied and taken....;).   Also, when did you all first get symptoms?