NOLA in September?

Nordy

Oh, Eva! What a weekend!

EvaM

Not that I wish him this pain, but in a way I'm happy to be able to take care of him for a change!

bdavis

Karen... Sounds about right... I bought my Marena once home and after a week or so trying to get the right size... I would measure yourself and then call them rather than using thier guide... The guide told me to get XL, but I bought a large and a medium... both fit, just depended how compressed I wanted to be.

Dana... Sorry for your tightness

sallym

Heard from Vicky at NOLA in insurance dept and Aetna wants all the diagnostic and procedure codes before they will agree to pay, Tentatively date for June 12 but I dont have a good feeling about it. (Thinking they are going to deny it) They think 4 revisions should have been enough. Trying to stay positive. Hey if you seem someone adjusting themselves in a Walmart or Target it is probably me LOL. May take 20 days to get an answer, but I would ,much rather do this then have the surgery and then Aetna not pay. Need some prayers ladies

Springtime

I got my Marena garment online before. Best $$ I ever spent! 

Nordy, my girls too.... ever vigilant!

Hang in there Sally... sending out good vibes.... 

michelekb

I was hoping you lovely ladies could answers some questions for me. I am suppose to have my stage 2 surgery in May with Dr. Massey in Charleston. I am concerned about how high my out of pocket expenses will be.Roper Hospital is in network so the hospital part will be fine. I am just worried becuase Dr. Massey is not in network so I will have to pay anything beyond what insurance considers resonable. Could anyone give me an idea of what it cost for your stage two with Dr. Massey? I really can't afford to pay a huge bill. The breast cancer has taken its toll on the family finances these past two years. I am so afraid I will not be able to afford my stage 2. Dr. Massey's office says they are still wating for insurance approval.

I don't post very often but I do read the post on this thread. I really appreciate all the imformationthat has been shared.

Thanks, Michele

CaitlinB

Thank you for all of the prayers!

Jade is BEAUTIFUL!  Congrats!

Nordy, CONGRATULATIONS on 7 years. That is wonderful!  I see you are triple negative.  

Unfortunately, it has been a rough two weeks.  My sister-in-law was also diagnosed with BC.  She is also triple negative.  My brother-in-law says that triple negative cancer patients have a hard time responding to "traditional" chemotherapy and that it is likely to come back within a year.  I keep thinking he is wrong, but what do I know, I haven't researched it.  What do you guys think? They are going to Madison today for a second opinion and looking at all these clinical trials.  I am worried about her, but I don't want to scare her. 

Any advice would be appreciated.  I am very encouraged by you, Nordy.  You are an inspiration!

CaitlinB

Does anyone know if there is a Triple Negative thread on this site and if so where do I find it?

Nordy

Caitlin, there IS a triple neg site on BCO, I will go find the link.



Yes, triple neg is very aggressive. Here is the bad: chemo, surgery and radiation are all that are available in our arsenal. We don't have the options of hormone therapy or herceptin (this is good and bad, good because it means less treatment, bad because it means less treatment). Triple negative tends to be more aggressive and affects more younger women. Not a rule, of course, just in general. Also, because of the aggressiveness it is more apt to recur in the first three years. The good: I hate to contradict your brother in law, but many triple negs respond very well to chemo. Not all. But not all triple positives do either. The other positive is, that if you are triple neg and you get past that three year mark, your risk for recurrance drops dramatically. So, that is a huge positive. I truly believe the key to dealing with triple negative is to hit it hard from the beginning. My oncologist did just that. Not that that is a guarantee, but unfortunately, nothing is. Give your sister in law a hug from me. And she, just like you, can call me anytime. Hang in there Caitlin. I am sorry to hear this. On another note, you are on your third chemo tomorrow, right? Is it green panty day?

Nordy

http://community.breastcancer.org/forum/72

glostagirl

Hi,

Another triple negative survivor here.  I'm 4+ years from my original diagnosis.  

Ditto to everything Nordy said.  

Here's another link to the main BC.org site with info on TN 

http://www.breastcancer.org/symptoms/diagnosis/trip_neg/treatment.jsp 

There is also the Triple Negative Breast Cancer Foundation, but quite frankly I have found the info to be better on this site.   

Your S-I-L will be very fortunate to have you to lean on as she goes thru this.  Best to you both. 

Hi Nordy, I'm back on the East coast.  It's good to be home on the ocean again.  That's my neighborhood in my avatar photo.  Can't wait to be able to walk on the beach!  

tigsun

CaitlinB - I had triple negative cancer in 2000.  I had chemo. 

Momma2four

Caitlin, I am so sorry about your SIL. Isn't it crazy the way things happen. I did want to tell you about my dear friend and chemo buddy. She was diagnosed 3 months before me, stage 3, triple negative. That was 11 years ago. Three kids later she never stops. She was 28 when she was diagnosed. Triple neg is aggressive like Nordy said BUT...I have also heard how well it responds to chemo!



On another note, I was very,very angry today. I found out that a friend of mine just got diagnosed, one year to the day her sister died from this f...ing beast we call breast cancer. It sucks so freaking bad! Her two young daughters were very close to their Aunt and now this. when will this stop??

Djweinstein

Caitlin--I hope you are hanging in there.  Please let your S.I. L. know that I was also triple negative TEN YEARS AGO this year!  I was 29 at the time.  My oncologist told me that he has had zero recurrences in his patients that were triple negative and got the same regimen that I did (lumpectomy, then AC and Taxotere and then radiation for 2 months).  So, please don't let her listen to the nay-sayers...I'm living proof that she can be fine!!!

bdavis

Michele.. you might get an answer from the Charleston Bound thread... I did not use Dr Massey, so I can't comment.

sallym

Caitlin Praying for you sister in law. Hang in there. Just remember everyone of us responds to treatment differently.

cider8

http://softtissuecenter.com/programs/softtissuemobilization.html



I asked my PT the name of the technique she uses on me. It's called soft tissue mobilization. It is more aggressive than myofacial release. She says it gives big results. The link above describes it a bit. My PT does use myofacial release techniques, but that alone is too gentle for my scar tissue. This info may be helpful for some of you still needing relief. I'm thinking of Dana!



So sorry to hear about more BC. I can't believe the awareness campaigns led me to believe BC was the 'good' kind to get. I feel foolish about my previous ignorance. I am certainly educating as opportunities arise.



I got the go ahead to schedule 2B. Although I realized for a while I'd need another surgery, I'm still bummed out about it. My breast seroma will be removed and the hardness will be assessed. And be replaced with...? This is the hard part of having an out of state surgeon. I have to rally all my faith and patience! I want to swim and play with my kids this summer, so I will schedule for Aug or Sept.



I also seem to have breast lymphedema. So that has me bummed out, too.



The up side is that my energy increases weekly. I am exercising and dropping weight. I have more to go but very motivated. My flexibility has really increased. I've had to buy smaller clothes! I'm also having some bad hair days, which is spectacular after all those no hair days.

Del11

cider: I've been having that as well.  It usually results in small bruises   But I'm told that's good, it's the scar tissue releasing and it's the chance for the body to heal again the right way.

cider8

Brenda, it hurts so good! I love it.

celtic_antique

Caitlin -- My 35 year old daughter had triple neg at 33, Stage II. Neoadjuvant chemo virtually erased the tumor (good thing they had put a marker in) so she was able to have a lumpectomy and rads. She has had her 2 year check up and is doing very well. FWIW --

AnneW

Michelle, Dr. Massey is out of network for me, and she accepted what my insurance paid. And it was a pittance, to be sure. She doesn't want anyone to have to mortgage their house or give up their first-born for the sake of a breast. I knkow her office will be able to tell you more when they know what your insurance will cover. But you're having Stage 2...did you have any issues with her Stage 1 expenses?

Springtime

Tripple Neg - can respond VERY well to chemo. I had a "chemo sister" who was tripple neg, and I was ER+ PR+ HR-. She had a COMPLETE response to chemo, her tumor totally gone! Mine did not respond as well, Acutally, I heard that with ER+ turmors, you can expect about a 50% shrinkage. And with Er+ you have the risk or recurrance hanging over your head for the rest of your life. As Nordy says, trip neg, after 3 years, you are pretty safe.

So, there is a lot of reason for HOPE!!!!! also, get her to read "Anti-Cancer, a New Way of Life" of similar book to help her understand how diet, exercise and serenity practices help a ton. Helps you feel more in control, or at least, that there are things you can do to improve your chances!!

Downey30

I agree with Springtime....I am about half way through "Anti-Cancer, a New Way of Life and it's very good.  A true eye opener.  I downloaded in on my Nook.

need2new

Caitlin - Sorry about your SIL. How are you doing? Hope your body & spirit are rolling with what you have going on. This just all sucks. Hang in there sista!

Katiejane

  Finally, some great news!!!!  I will be having my DIEP at The Center!!!!!  Insurance covers both Dr's Massey and Sullivan 100%, procedure is approved, and a cash deal has been worked out by the wonderful, wonderful people at St Charles Surgical Center!!!!  I'm in shock!!!  You all have been such great support and I know you understand.  My sweet husband tries but...he has been great.   I don't have the date yet, should find that out later today or tomorrow. We are gonna celebrate tonight with some Mexican food and margarita's!!!!  Will post the date when I hear!!!!!   WOW!!!!   katiejane

Downey30

Congrats Katiejane,  I know you must feel like a load has been lifted off your shoulders. Have a great celebration!  You deserve it.

Adey

KJ- That's my kind of celebrating!  Born on Cinco de Mayo.  Congratulations!

(((Caitlin & Sis)))

Nordy

Katiejane. I want to give ou the biggest hug! Hurray! I have a tentative date in July... Hint, hint...

bdavis

Congrats Katiejane

CaitlinB

Hi Ladies,

Thank you for all of the wonderful support and GOOD news for Val!  I will keep my fingers and toes crossed that three years from now we are both here to say, "WE ARE SURVIVORS!"  I am so inspired by the wonderful women on this site.  You are all so incredible.  

I am doing well.  YES, yesterday was green panty day.  My May date has been switched to May 8th so keep it marked on your calendar if you are part of the Irish Brigade, lol!  

It seems like days 5-8 are my worst days for nausea, fatigue and feeling generally rotten.  

I go back to work on Monday but luckily most days I can work from home.  A nice benefit!  

Congratulations KatieJane!  That is wonderful!  I would be celebrating with a JUMBO margarita too!  :-)

Betsy, I loved seeing pictures of your son's? daughter's? prom on FB.  They were a beautiful couple.  

Michelle, that is such an inspiring story about your friend.  

DJ, you know it, girl!   You are a rockstar! 

((((HUGS)))