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NOLA in September?

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Comments

  • Del11
    Del11 Member Posts: 398
    edited January 2012

    Belly button marble trick:



    http://www.tuckthattummy.com/marble_bb.htm

  • JustLaura
    JustLaura Member Posts: 213
    edited January 2012

    Oh my - I think I need the marble trick!! My belly button is a slit after my Stage 2. I'm going to try it too!

  • cider8
    cider8 Member Posts: 472
    edited January 2012

    Brenda, I tried the marble thing after you mentioned it.  When I straighten up as I should my belly button is a bit vertical slit.  I will keep doing it!

    It's time for a big celebration!!!  Page 500 for the NOLA in Sept thread!!!  Woohooo!

    After almost a month of no Dr appts, I got on the horn today and made 3 Dr appts.  One more to make Tues.  So sick of the appts!!!  (you all know)  Oh, but my reward is a hair appt for last week of Jan.  My first hair cut!!  I can't wait. 

  • EvaM
    EvaM Member Posts: 272
    edited January 2012

    I've already told my parents I want them to come with me for stage 2 and they are eager. I know my father would be willing and able to help me with anything. I watched him care for my mother when she was helpless. But no, I'm not ready for that.

    I'm having my boobs done at last
    And the care I will get is first class
    I love you, Dad
    Please don't be mad
    But on your help I have to pass

    I don't know what it is, but I find limericks a super stress reliever. Try it and see! 

    Eva 

  • celtic_antique
    celtic_antique Member Posts: 351
    edited January 2012

    You crack me up, Eva! Humor goes a long way towards healing ... keep you and us smilin'!

    Last post-op call yesterday and was reassured that my "hairy" nipple was just the tiny sutures that would self-absorb. Whew! Got enough areas to shave! Will indeed need a Stage IIa or Stage III or whatever as the contralateral breast seems to have eaten the fat grafts and/or they migrated over to my new breast! LOL! And then adjustment to the nipple (quite large right now!) and tattoos. NOT for quite a while yet. Cannot bring myself to go into an operating room for a bit, and we are in the full throes of launching our bed and breakfast, so Celtic is a busy (albeit still healing) girl!

  • Springtime
    Springtime Member Posts: 3,372
    edited January 2012

    That belly button marble thing, I think I could use it too. My belly button looks a bit petite! So those of you trying it, REPORT BACK!! I will wait to hear what you think about it before diving in! 

    Celtic, yes I had "hiary" nipples too but all gone now! "Tincture of time" and all that.... 

  • VictoriaB
    VictoriaB Member Posts: 85
    edited January 2012

    Getting ready for my DIEP--I do remember Laura saying they put a little incision around your belly button--does anyone know why? Dr D said he would put the DIEP incision low on me. And those of you who have had DIEP, does the tissue feel the same--or is it firmer, or softer, or the same as the GAP side? I am hoping they can match the other breast!

  • Nordy
    Nordy Member Posts: 1,106
    edited January 2012

    Spring- I thought your lymeric was really good! The marble in the belly button seems to be a tried and true thing as I have seen it so many times suggested on different reviews of tummy tucks! I'm sure everyone here will letyou know how it is going for them.



    Victoria- the reason you will have a scar around your belly button is because they will cut away abdominal skin around it to be pulled down over the area that they take the flap from. I am going to try to find a picture....

  • Del11
    Del11 Member Posts: 398
    edited January 2012

    My DIEP side was way softer than the GAP in the beginning, but for whatever reason they seem to be evening out now. The GAP side def seemed heavier than the DIEP in the beginning, not so much now. Maybe I'm gaining weight naturally on the DIEP side more than the other? It'll be interesting to see what happens when I get back in shape and lose some fat.

  • Nordy
    Nordy Member Posts: 1,106
    edited January 2012

    Hmmm, I am having trouble finding a picture because the ones I am thinking of are not showing up on my ipad! (What is up with that?) Anyone else able to bring one up?

  • Del11
    Del11 Member Posts: 398
    edited January 2012

    Here's a diagram:  http://www.mandellbrown.com/procedures/images/tummy-tuck4.jpg

    Also this:  http://drmarga.com/DIEP.html

  • besa
    besa Member Posts: 289
    edited January 2012

    http://www.ncbi.nlm.nih.gov/pubmed/22149876

     BettyeE-   Here is an article that may help with your insurance company- just came out in the New England Journal of Medicine - don't know if you have seen it but thought I would post just in case.  You can download the full text for free. 

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    VICTORIA... Dr D said the GAP breast will be firmer for a while, but will look the same... over time, that difference is less noticeable. For me, my GAP breast has a firm area, so when I compare the outside of my breasts they are quite different... but the inside side (cleavage side) they feel the same... about the belly button...and the belly skin is pulled down like a shade and they need to cut a new belly button hole, and so they stitch it in place. My belly button looks just like my old one and healed really fast.

  • VictoriaB
    VictoriaB Member Posts: 85
    edited January 2012

    wow, thanks. I did check out Dr. Marga's site from Jeskachi's note. Now I know why the nurse called and asked if I had had any lymphedema with the BMX/recon. (I did have axillary web on the left side and it was so painful). To my knowledge I have not had lymphedema. So I am wondering if instead of connecting the blood vessels to the chest wall artery (like he did last time), Dr D will use the armpit area instead for connection? Does anyone know? And do you know if connecting to the armpit area can have greater increase in lymphedema? Cause I sure don't want that!

  • BettyeE
    BettyeE Member Posts: 136
    edited January 2012

    BESA,

    Thank you for the article. I am printing it and writing a personal letter, or should I have my Dr. to write it?

    Bettye

  • need2new
    need2new Member Posts: 165
    edited January 2012

    Bettye - I would do both. First, write a brief personal letter about being diagnosed and all that you have done to stay healthy, Then address the shortage of the chemo drug, it is not your fault. 

    I would search for a few more medical articles substantiating the EverilomusArimidex trial and also proven regimens that have used Arimidex for ER/PR + cancers.

    Then I would ask my doc to also talk of the shortage and this trial being the obvious choice. Send it al registered to the review committee. Who is your insurance?

    I so wish I was not having surgery on the 19th beacuse I love doing this kind of stuff. I have had to educate my own insurance (a self-insured hospital plan, I work at a hospital) and  have been successful getting things paid for. It is draining, has caused many tears but I persevere!

    I am taking my computer so will have access and will try to help you. Honestly - it is their job to say no, no, no, no until you give up. Sorry you have to use your energy to do this.

    You go girl! 

  • besa
    besa Member Posts: 289
    edited January 2012

    BettyeE- I am glad you thought it was helpful.  I just did a quick pubmed search. 

    http://www.ncbi.nlm.nih.gov/pubmed/

    I can usually get the full text of any peer reviewed journal article so if there is someting you want just ask.    (I don't know if there are online abstracts from the last San Antonion Breast Cancer Symposium (SABC S) - possibly something on this topic.) Pubmed is a quick and easy resource. 

    Possibly these articles? 

     http://www.ncbi.nlm.nih.gov/pubmed/22068628

    http://www.ncbi.nlm.nih.gov/pubmed/19561004

    (I can pull the full text for the one that isn't available online if you want it)

  • BettyeE
    BettyeE Member Posts: 136
    edited January 2012

    Need2new and Besa

    Thank you so much! I can use all the help I can get. At $7,000 every 28 days + cost of ins. And deductible starting over for new year, needless to say it hurts a bit!

    Need2new. Good luck with your surgery. I' ll be watching for your report.

    Bettye
    Diagnosis: 2/2/2010, ILC, 6cm+, Stage IV, Grade 2, 9/16 nodes, mets, ER+/PR+, HER2-</
  • BettyeE
    BettyeE Member Posts: 136
    edited January 2012

    Besa, anything that you think might help would be more than appreciated!

  • besa
    besa Member Posts: 289
    edited January 2012

    BettyeE-  an abstract that was just presented at the  December 2011 San Antonio Breast Cancer Symposium.  They are using a different aromatase inhibitor because these patients were refractory  to letrozole or anastrozole but the last line in the conclusion is "EVE in combination with an aromatase inhibitor is a promising therapeutic option for women with hormone receptor-positive advanced breast cancer" 

    Also the drug companies that makes these drugs sometimes have special programs for patients where the cost is a hardship (at $7000/28 days without insurance this would be a hardship for just about anyone) .    It might be worth a call to the drug company to see if they offer any help.

    .

     http://www.abstracts2view.com/sabcs11/view.php?nu=SABCS11L_1653

    [S3-7] Everolimus for Postmenopausal Women with Advanced Breast Cancer: Updated Results of the BOLERO-2 Phase III Trial.

    Hortobagyi GN, Piccart M, Rugo H, Burris H, Campone M, Noguchi S, Gnant M, Pritchard KI, Vittori L, Mukhopadhyay P, Sahmoud T, Lebwohl D, Baselga J. The University of Texas, MD Anderson Cancer Center, Houston, TX; Jules Bordet Institute (Institut Jules Bordet), Brussels, Belgium; University of California, San Francisco Helen Diller Family Comprehensive Cancer Center, UCSF, San Francisco, CA; Sarah Cannon Research Institute, Nashville, TN; Institut de Cancérologie de l'Ouest - René Gauducheau, Centre de Recherche en Cancérologie, Nantes Saint Herblain, France; Osaka University, Osaka, Japan; Comprehensive Cancer Center, Medical University of Vienna, Vienna, Austria; Sunnybrook Odette Cancer Centre and the University of Toronto, Toronto, Canada; Novartis Pharma AG, Basel, Switzerland; Novartis Pharmaceuticals Corporation, East Hanover, NJ; Massachusetts General Hospital Cancer Center and Harvard Medical School, Boston, MA

    Background: The mTOR pathway is constitutively activated in hormone-resistant advanced breast cancer (ABC). In phase II trials, everolimus (EVE) showed promising efficacy both as monotherapy and in combination with endocrine therapy in patients with estrogen receptor-positive (ER+) ABC. This double-blind, placebo-controlled, phase III study evaluated EVE plus exemestane (EXE) in patients with ER+ ABC refractory to letrozole or anastrozole.
    Patients and Methods: Eligible patients were randomized (2:1) to EXE (25 mg/day) with EVE (10 mg/day) or with matching placebo. The primary endpoint was progression-free survival (PFS). Secondary endpoints included overall survival, response rate, quality of life (QoL), and safety.
    Results: 724 patients were randomized (485: EVE+EXE; 239: EXE). Baseline characteristics were well balanced; median age was 62 years, 56% had visceral involvement, and 84% had documented benefit from previous endocrine therapy, which included letrozole or anastrozole (100%), tamoxifen (48%), fulvestrant (16%), and chemotherapy for advanced disease (25%). This analysis is based on 457 events and median follow-up of 12.5 months. PFS by investigator assessment showed a hazard ratio (HR) of 0.44 (95% CI: 0.36-0.53) and a median duration of 7.4 (EVE+EXE) vs 3.2 months (EXE) (P<1 × 10-16) and 12-month estimate of 31% vs 10%. PFS by central assessment showed an HR of 0.36 (95% CI: 0.28-0.45) and a median duration of 11.0 (EVE+EXE) vs 4.1 months (EXE) (P<1 × 10-16) and 12-month estimate of 48% vs 18%. Response rates and clinical benefit rate were also higher for EVE+EXE (12.0% vs 1.3% and 50.5% vs 25.5%). A total of 138 patients died; 17.3% in the EVE+EXE arm and 22.6% in the EXE arm.
    The most common grade 3/4 adverse events were stomatitis (8% vs 1%), anemia (7% vs 1%), hyperglycemia (5% vs < 1%), dyspnea (4% vs 1%), and fatigue (4% vs 1%) for the EVE+EXE and EXE groups, respectively. Grade 3 pneumonitis was observed in patients receiving EVE (3% vs 0%). No difference in time to deterioration of QoL was observed. EVE increased EXE steady-state Cmin and Cmax levels by 45% and 64%, respectively, with no difference in estradiol levels. Serum markers of bone resorption and bone formation increased in the EXE arm and generally decreased in the EVE+EXE arm.
    Conclusion: The addition of EVE to EXE is associated with significant and sustained prolongation of PFS. Adverse events were higher in the combination arm but manageable by dose interruption and/or reduction and did not affect QoL. EVE in combination with an aromatase inhibitor is a promising therapeutic option for women with hormone receptor-positive advanced breast cancer.

    Thursday, December 8, 2011 11:00 AM

    General Session 3 (9:30 AM-11:15 AM)

    Terms of Service.
  • Djweinstein
    Djweinstein Member Posts: 60
    edited January 2012

    CHELLE--I have a little trick that I like a lot for hiding my hip drains when I go out...I bought a little side purse...the kind that I can sling over my chest (over my neck and hanging on one side down by my hip) and I put my hip drains in there.

    Then I've bought some cute tops (Express has some great ones now that are fairly cheap and cute) that are designed to be loose at the bottom.  Those then cover the inch or two of the tubes that could be seen (only if you look carefully BTW) going to the purse.  I got the OK from Dr. D. that wearing this little purse was fine (I wanted to make sure that since the strap lighty goes between my breasts that it was ok).  All that's in the purse are the 2 drains, and the purse itself is light!  (For added fashion, buy a knock-off Coach or something...$20 at the mall!)

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited January 2012

    Bettye, also by contacting the pharma company directly it is possible that they have a program for patients in your position... I'll look it up for you!

    Love this Sisterhood :))

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited January 2012

    Novartis Oncology Reimbursement Hotline



    1-800-282-7630*

    Through the Reimbursement Hotline, Novartis Oncology is dedicated to answering your questions and providing assistance with the reimbursement process for Novartis products. By calling 1-800-282-7630, providers and patients can receive assistance in resolving reimbursement issues and concerns.

     

    Insurance Verification

    The program verifies patients' medical benefits, helps determine insurance coverage, and clarifies co-payment obligations.

     

    Denials/appeals

    The program assists providers in obtaining appropriate reimbursement.

     

    Coding/billing questions

    Program staff can assist providers with questions regarding coding and billing.

     

    Alternative funding searches

    Program staff can search for possible assistance for patients with insufficient medical benefit coverage or no drug coverage and refer to other sources of funding that could help alleviate or reduce costs.

     

    Referrals to copay cards

    Novartis Oncology has many product-specific copay cards to help patients meet their copay obligations.

     

    Referrals to patient assistance for low-income uninsured patients

     

    Letter of medical necessity

    Through the hotline, copies of sample letters of medical necessity are provided.

     

    Scheduled counselor appointments

    Office practice managers can submit their questions and then schedule time to speak with a team of Novartis professionals who will seek to provide solutions to any problem.

    *The Reimbursement Hotline and Novartis Pharmaceuticals Corporation do not guarantee success in obtaining reimbursement, nor do we submit appeals on behalf of providers or patients. Third-party payment for medical products and services is affected by numerous factors, not all of which can be anticipated or resolved by Reimbursement Hotline staff.

     

  • Soccermom4force
    Soccermom4force Member Posts: 311
    edited January 2012

    Bettye, check this out also...

    "Partnership for Prescription Assistance (PPA)



    The mission of PPA is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through the web site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669) or view online at www.pparx.org.

    Phone: 1-888-4PPA-NOW (1-888-477-2669)

    Web site: www.pparx.org"

     

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    DJWeinstein... Thats what I did, but used the pain pump bag... slung it over my shoulder and it was big enough for 5-6 drains (barely)... I wore loose bottom shirts or the ones that bloussoned.

  • need2new
    need2new Member Posts: 165
    edited January 2012

    DJWeinstein - Crazy question, is the bag underneath your shirt? The drains are at your hip on each side correct? 

    Anyone walk from the Clarion Boutique to the Center? Safe?

    Eats at the place beneath the Clarion? I have all day appointments on Wednesday, surgery Thursday. Is there somewhere to eat close to the center or will they feed me?

    Is there a blowdryer in the hospital, I do not like wet hair. 

    Have been so Zen and just feeling the strain of the last few years it seems. Trying to stay healthy.

    Any last minute ideas, thoughts, things I should do?

  • besa
    besa Member Posts: 289
    edited January 2012

    BettyeE- another possible resource that may help you with your insurance appeal or to get the medication you want at a reasonable cost.

    "The Patient Advocate Foundation"

    Their web site says there is no charge for their services.  (I got the name of the organization a while ago from a friend who works for a nonprofit patient advocacy group. I don't have any first hand reports from someone who has used this group but to me it looks promising.)

    http://www.patientadvocate.org/index.php

    http://gallery.patientadvocate.org/requests/paf_cm_request.php 

    One of their services:

    "PAF Assists Patients with Insurance Appeals, Pre-Authorizations, and Coding & Billing Issues

    Insurance Appeals

    An insurance appeal is a written request submitted to the insurance company involved, by the patient, the patient's appointed representative, or in some cases, the patient's doctor, to have a decision of denial for drugs and/or treatment overturned. (Simply stated, a denial means that the insurance company has decided not to pay for the procedure or therapy that your doctor has recommended.) The services may have already been performed or may be scheduled in the near future.  If the denied procedure has not yet been performed, the insurer may be denying the request for pre-authorization.  PAF case managers assist patients through the appeal process to allow the patient to be heard and provide any and all necessary information to convince the insurance company to change their decision and provide coverage for the procedure. "

    "How PAF Assists Patients with Access to Agents, Devices & Procedures

    PAF offers direct guidance for patients seeking access to pharmaceutical agents (drugs), devices that help with certain functions as medically necessary, and procedures such as surgeries that you may encounter with your insurance companies. Frequently, the insurers deny these types of requests because certain conditions are usually not met. PAF's professional case managers will be the liaison between you  and the insurer (your insurance plan or policy) to insure that you are getting the very best possible care and access according to your policy."

  • bdavis
    bdavis Member Posts: 3,192
    edited January 2012

    Karen... the hospital will feed you, so no worries there... And for me the bag went over my shoulder and was at about hip height... on the outside of my clothes... the tubs come out of your body and up over the top of the compression girdle and then are concealed under your shirtexcept for the inch or so as they come out to the bag.... they really aren't noticeable.

  • BettyeE
    BettyeE Member Posts: 136
    edited January 2012

    Thank you, thank you thank you everybody for all the info. I'm on it! I'll keep you posted!

  • kaitsmom
    kaitsmom Member Posts: 251
    edited January 2012

    need2new - Check out Zea for good food - right near the Center.  Really good menu.

    Bettye - keep on fighting!!!  I worked for a third party administrator.  That is a company that helps companies design their own insurance plans, (which the company itslef funds), and processes claims for those companies. It really was our job to say NO whenever we possibly could.  I lasted there all of 8 months.  It was awful.  Made my heart, and soul ache. (Before that I was a social worker who helped women to get appropriate medical care. So you can imagine how those 8 months felt).  Keep on plugging away . . . You can wear them down!

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