Western New York Area

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  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    Shocked

  • bevin
    bevin Member Posts: 519
    edited July 2014

    HI Karen- find out the names of the drug company the makes the injectibles or what ever you need. They often will give you coupons for free medication if you can't afford it. Call them, tell them you were prescribed it and see if they offer that program. Many do or they provide it at a deep discount if not free.  good luck, worth a phone call.

  • Kb33
    Kb33 Member Posts: 33
    edited July 2014

    hello all.  Another WNYer here.  Diagnosed with dcis this spring.   Mx it will be for me.  Really interested in DIEP.  Saw a few bs here in town.  None of them wow'd me and almost everyone wants me to have implant with expanders.   So, flew to NOLA for a consult and they for sure can do the stacked DIEP.   Curious if anyone else has had DIEP and if you were able to get it done in area and like your team?   

    Also... Just thought I would introduce myself to other girls in the area and see what is going on locally... Thnx

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    Welcome kb. Great group of women. All ages and all stages. Happy with my group Bauer /soniwala combo. I have a friend in Florida that had that procedure and doing well years later. I'm guessing she had process completed in that area   I'm sure friends will be along soon to welcome you

    Karen. How's the Migraines?

    Wild weather yesterday? Wow

  • moderators
    moderators Posts: 8,615
    edited July 2014

    Hi Kb33,

    Here is also a link to a general thread on the topic of DIEP

    DIEP 2014

    Best wishes to you.

    The Mods

  • karen333
    karen333 Member Posts: 2,037
    edited July 2014

    Dear all, I got my med. at 3 yesterday, bevin, I will be following up on your suggestion, as they released tablets not injectible, my headache is gone, finally.  I am as weak as a kitten, it will take a bit to build up my strength, love you all, Karen

  • Kb33
    Kb33 Member Posts: 33
    edited July 2014

    thnx for the welcome everyone.   My insurance has discovered that can cover my at strong and that Roswell brought on two new docs recently.   Does anyone have any experience with christiano or Langstein at strong or moon and lohman at Roswell?   Appreciate any insight.   Thnx

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    although I was employed there years ago I am not familiar with those docs. 

  • janhart
    janhart Member Posts: 292
    edited July 2014

    Karen, so glad you are getting some relief. Rest and get strong.

    Welcome kb33. I had TEs and implants with a local PS, so can't help you out. I think there is a thread with "Rochester" in its title and I know Langstein has been mentioned. Maybe do a search and the thread may come up. Best of luck to you! 

    Hi Everyone.....wedding this Sunday! I'm hoping I will be able to make a lunch before things gear up with the next one....

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    hi jan!!  I'm at the office and Nora just mentioned things are getting crazy with the wedding. Enjoy the day !! 

  • karen333
    karen333 Member Posts: 2,037
    edited July 2014

    Jan, is it this Sat.?, fever pitch time, enjoy, bring us plenty of pics.  bevin, tried tthe Northrup Lab who makes the generic, HA HA, no patient assistance program, Maureen got me Glaxo, maker of the original, they do have a program and will be sending me the app.  What a glorious day not to have a headache in, puts things in perspective,.love, Karen

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    yippee no headache new gal on the thread and a patient assistance program 

    Hi all chemo went good scans on Monday. Jump in and pray for good news. Let's set a lunch date too. 

  • bevin
    bevin Member Posts: 519
    edited July 2014

    Hi karen- yes I should have been clear the generic labs dont offer financial assistance- the brand name companies do.  Im glas it worked out!

    Kb- welcome and im sorry your dealing with all of this. I didnt have mx so cant offer anybinput. Good luck with your search and welcome. 

    Jan- I can not believe the wedding is this weekend. Enjoy the day and stop at one point during the party and be sure to drink in the view of your family amd friends having a wonderful time. sometimes we are so busy we forget to revel in the moment. Enjoy!

    Hope everyone else is well.


    Bevin

  • patsback
    patsback Member Posts: 36
    edited July 2014

    Kb33 - Howard Langstein at Strong is a wonderful plastic surgeon...(I think that's who you were asking about.

  • Kb33
    Kb33 Member Posts: 33
    edited July 2014

    thnx patsback.   Can you recommend breast surgeons in Rochester?

  • patsback
    patsback Member Posts: 36
    edited July 2014

    My breast surgeon is/was Kristen Skinner...she's with Strong...located at the Pluta Cancer Center on Red Creek Drive.... Excellent doctor.

  • karen333
    karen333 Member Posts: 2,037
    edited July 2014

    I go away for a few weeks of migraines and we get a new woman , welcome Kb33, another 3 gal, sorry you have to be with us but we'll love you right up.  Maureen what jeans are you wearing? I'm jumping in Sunday night, keep those CM's coming.  Now, let me get me get  started on the luncheon date, let's do Creelview till I get a handle on these headaches, that way it's only me and Linda missing, sorry about that  Linda.  Betty, what weekends off in August?  Kb, Betty is the only only one still working weekends so we plan around her, except for Debbie, wherever are are you?

  • karen333
    karen333 Member Posts: 2,037
    edited July 2014

    OK Ladies, here are the dates, the 9th, the 23rd and the 30th, Betty has that week off for vacation.  List the dates that are out for you and we'll go for the Saturday most or all of us can do.  How are you doing Jan, was it beautiful, one more to go, miss you all, love, Karen  Maureen, how's the scan go? and who is going with you on results day?  I'm available.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    Don't know my availability. They cancelled the scan due to insurance fiasco and I'm feeling sorry for myself right now. Sorry to be a downer just in a mood today. don't know when they will reschedule. 

  • karen333
    karen333 Member Posts: 2,037
    edited July 2014

    Damn insurance, just what you do not need at this point.  Will call tomorrow, love, Karen

  • janhart
    janhart Member Posts: 292
    edited July 2014

    Hi all, wedding was more wonderful than I could have imagined. Bride and groom were glowing and are so much in love. They're honeymooning in Jamaica. Hopefully will have pictures to share soon. 

    Karen, glad those migraines are calming down.  Maureen, ugh, just don't need the extra nonsense.  Hope it gets resolved soon. 

    Hope everyone else is well and enjoying some summertime. I'll have to check those dates for lunch, I think the 23rd is out for me, but maybe one of the others will work.

  • Kb33
    Kb33 Member Posts: 33
    edited July 2014

    hey everyone.  Busy week on travel with work.  I've decided on a DIEP... Which limbered my choices for in network coverage with insurance company to basically strong in Rochester.    Prior to knowing strong was in my network... I went down to NOLA to the breast center.   I was really impressed and walked away feeling comfortable with all the docs and providers there.   Thought I could plan for a October surgery.   Then insurance told me that strong was In the network and to save myself 20k$.  I should go there.  By the time I got comfortable with that.... They could not see me until mid august.    Now the breast center is willing to help me out a bit financially to make it more of in network coverage.... But the pressure is on the schedule surgery in like two weeks.  Omg.   So not what I was planning.   I know this sounds crazy... Since most don't have time to plan... But I felt like it was the only control I had... What type of reconstruction.. Who was doing it and when...  Now that that seems to be gone... I fell like I am at that moment of just being diagnosed and rushing into all of this.   I don't think they understand that buffalo weather sucks and I don't want to give up 4 weeks of sunshine to sit inside all day.  Lol

    I think also.  Reality hit this afternoon.  That this is real.... Scary... And not going to be easy.  My ability to control my life is slipping away and up until this.... I was considered to be healthy.  No dr visit in 7 years.  Still feel healthy... But my breast decided to grow these buggers that will eventually take that all away.   Sigh.  Guess I probably needed the reality check.. But it's not very nice

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    ((((Hugs))))) kb33. Take comfort knowing the decision part can be the most difficult  to manage. Once plans are in place (whatever you decide) you will feel more in control.  Agree this is not a path anyone chooses to travel however you can learn to dance in the rain. 

    Love 

    Maureen

  • Rozann
    Rozann Member Posts: 14
    edited July 2014

    Patsback, did you ever go to Roswell?

  • janhart
    janhart Member Posts: 292
    edited July 2014

    Kb33, sorry you are feeling out of control in this situation. Unfortunately, there are only some aspects of our health and health care we can control. I also felt I was in the best health in a long time and whammo......I get diagnosed with the dreaded c. it didn't make sense since I felt great, not sick at all. Hopefully the up side will be doing the type of reconstruction you want. Let us know when your surgery date is scheduled.

    Jan

  • Kb33
    Kb33 Member Posts: 33
    edited July 2014

    well girls.  Surgery set.  8/19.   Decided on going to New Orleans for it.  Yikes.  Now to figure out how to get everything done in time

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    one decision down. Great news!!!

  • janhart
    janhart Member Posts: 292
    edited July 2014

    Maureen, I didn't know you were considering surgery. Would love to get together for coffee sometime soon before your surgery date. I'll call soon.

  • janhart
    janhart Member Posts: 292
    edited July 2014

    Sorry, just posted to wrong person. Kb33, sounds like a good decision. Best of luck on this journey.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited July 2014

    hi all had my scans today after insurance is starting to get straightened out. Who pays for what will probably go on for months. Results are thurs so things are looking up. Thanks for the support. I miss all of you so very much