December 2011 Surgeries - want to wait together?

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  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited April 2012

    Wheeee! Go fly KAM as long as you can. Hopefully this last one will be done quickly.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2012
    Big hugs to you, Kam...
  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited April 2012

    Kam, my taste buds go after a day or two of my TCH tx. They stay home for more than 10days and start coming back about 4days before the next tx, so about two to two and a half weeks. This could change with any treatment so I eat whatever when so an salty and sweet thing the only thing I taste during the bad time. Good luck

  • Bogie
    Bogie Member Posts: 286
    edited April 2012

    Arimidex made water taste like medal! Guess I can toss my metal water bottle sniff sniff.



  • Ginger48
    Ginger48 Member Posts: 1,978
    edited April 2012

    Hang in there December sisters going through chemo; wishing we could make it all better for you!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2012

    Moonflwer...who is "they" in your post?  TCH - is that Taxane of some sort/ Cytoxin / Herceptin?? Which one is affecting your taste?  I can't tell, do you do chemo every 2 or 3 weeks??

    I would like to report that my taste came 50% or more back today!!! I can't tell you how frustrating that was (or maybe I did). I think I actually had lost it the whole previous week, but since I"m such a lousy cook, I couldnt even tell until I went out to my favorite restaurants.  So far, Taxol is agreeing with me, but expect to be up the next few nights on the steroids....maybe the worst is over!!

    Bogie - oh shoot on the water/metal thing. Really? Water is my mainstay (as we get spring water right to our taps where I live).  Everytime?

    Had a great day with my gf in chemo-town.  Found these sun hats that were marked down from 35 to !2 dollars and I feel like a scored.  Wigs just don't work when one is sweating.

    Wishing all the best to my December sisters

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited April 2012

    Kam, my TCH is taxotere, carboplatin, Herceptin, every three weeks with Herceptin every week in between. The they is my tastebuds, home was supposed to be back. As in, they come back to normal the last week before the TCH tx. Darn autocorrect. Sorry for the confusion

  • fitzdc
    fitzdc Member Posts: 1,467
    edited April 2012

    Hi ladies!  DH surprised me with a trip for the weekend.  Going to Chicago  and taking the overnight train back home (I think this is more for him as he is a fan of trains).  Hoipe everyone else has a nice weekend!  Calling the PS today to get appointment for revision.

  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited April 2012

    fitz-what a wonderful surprise.  Bring a jacket and umbrella, it's going to be cool and rainy here this weekend. Enjoy your trip!

  • goldlining
    goldlining Member Posts: 1,178
    edited April 2012

    Just returned and still jet lagged from a trip to England (11 days including 8 in London). Walked probably a marathon's worth in the days I was in London. Over 35km in what I was able to count. I did have swelling from the flight in both directions, primarily in the DIEP flap on just one side (great! crooked again!) My mail was on hold while I was away, and the first delivery included an appointment for the hospital LE clinic, which I had missed as the time was six hours before I received the paper. Grrr. Other than the swelling, it was fantastic to be away and off the email except for brief intervals of free wifi. But all good things must end and it's back to exams and marking.

  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited April 2012

    goldlining - sounds like a fun trip. Interesting on the swelling - why do you think that is? I've been itching to travel some, but I don't think it'll happen much this summer.

    Exams and marking - my least favorite part of teaching!!  Good luck!

  • Bogie
    Bogie Member Posts: 286
    edited April 2012

    Fitz go to the Gold Coast area Division and Rush, then walk around Navy Pier, shop at water tower and enjoy our fun city in Chicago!!!

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2012

    Thanks Moonflower - do you know if it is the Taxotere (is that in the Taxane family like Taxol?) or the Carboplatin that affects your taste.  My taste is back now that I'm over 2 weeks from the Adriamycin.  It is sooooo wonderful...but now on Taxol. So far so good - Taxol is a breeze :) comparatively.  

    Traveling is such a great distraction from BC, even if it is for BC. As much as I hate travelling to see my PS, I love my destination.  It's like time lapse photography to see the gardens of Portland, Oregon flourish every 2 weeks. They really blossomed this last trip.  London and Chicago sound like fun desitnations too. 

  • goldlining
    goldlining Member Posts: 1,178
    edited April 2012

    My understanding is that plane trips and swelling go together like mustard and hot dogs, presumably because of the pressurization. The LE therapist said many people use sleeves for arm LE when they fly and if I used a compression vest, it would deter the lymph fluid from pooling. I would wear it for running as well as running makes the swelling happen too. However I am still waiting to get assessed for LE vest so I don't have a real compression vest, and the spanx camisole did not work. (Well, it was slimming, and comfortable, but not anti-swelling.) I am so clueless about the manual lymph drainage. I try to pay attention, but I cannot make it go on my own.

    It was absolutely wonderful to be there though. It was like travel back in time pre-BC and if it wasn't for the swelling, I am sure I would not have thought about BC at all the entire time. 

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2012
    Goldlining- you have LE and they only took out 2 nodes?  My BC "released me" for BP and blood draws on my SNB side (1 node), no questions asked.  I did have some cording, but the PT popped into oblivion.
  • goldlining
    goldlining Member Posts: 1,178
    edited April 2012

    I don't know if it is LE or not. The one LE therapist said it was, and also said I had it on my arms and legs (?!) What bothers me is on the flap, not the arms. I had a bilateral DIEP but it is only on the delayed side where the two nodes were previously taken in the mx. He (the mx surgeon) really did a number on it, and I had massive numbness all around the back and under the arm, and I think I may have had some swelling around the back before but while it was pre-DIEP, I noticed the numbness not the swelling. The previous mx scar was painfully tight as well. Now that it has the DIEP flaps installed, the tightness of the mx is relieved and it all looks great. But with exertion, and apparently with flying, one flap puffs up like a balloon, to the extent that the incision scar ends up being a groove. It is creepy. What I want is for someone to confirm whether it is LE and tell me what to do to knock it back and ward it off because I don't want to stop flying, running, etc.

  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited April 2012

    Goldlining-I hope you can get some answers and a respite from the discomfort-and soon.

  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited April 2012
    Goldlining - find a good LE specialist. I went to a local PT for my cording and she apparently didn't know what to do.  After 3 visits...no improvement. At the teaching hospital I went to for surgery, they sent me to PT who is an LE Specialist.  She got rid of my cords in one visit! (Cords are not LE, but ca be a precursor.)  I think there are very few PTs who have this qualification.
  • Ginger48
    Ginger48 Member Posts: 1,978
    edited April 2012

    Kam I have LE on both arms with only 1 sentinel node removed on each side.

  • goldlining
    goldlining Member Posts: 1,178
    edited April 2012

    I went to a RMT with LE certification who works with a PT with LE certification, but it was not a convenient location. No sooner did I wake up the next day but it was back again. I know the goal is to learn to do it yourself but I couldn't remember how.

    I have a referral to the big cancer hospital survivor clinic that is 5 minutes walk from my office that allegedly has lots of LE expertise. Counting down the days...

  • Bogie
    Bogie Member Posts: 286
    edited April 2012

    Goldlining, I'm going through the exact same thing! In fact I'm so discouraged I came on here tonight to bring up this very topic to see if anyone else has been diagnosed with lymphadema of the breast and underarm on lymphnode removal side. It's been swollen and numb since surgery on 12/20 never went down (edema). I read if it goes past the 3 month mark it's then considered lymphadema. My BS who did my MX diagnosed it. The LE specialist agreed....sigh. I was doing the manual drainage wrong too. I'm very upset, this was my big fear. Once you have it ....it's for life. This last bout of complication just put me over the edge. Tight cami not doing the trick. I go Tuesday for therapy.



  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited April 2012

    Aw, that sucks Bogie.

  • Bogie
    Bogie Member Posts: 286
    edited April 2012

    Yeah it does Moon. Is anyone else swollen after MX and nodes removed under their arm and towards your back and top portion of foob? I'm so angry my PS never told me to wear a tight cami or anything, and I see him weekly. I was loving going loose and bra less. What is wrong with these doctors?

  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited April 2012
    Bogie - I have swelling what seems sort of off and on, but I don't think it's lymphedema. I'm sorry you're going through this. I'm ready to move on and be done with this whole BC chapter of my life, however I still have surgery and procedures in my future so I can't move on yet. Wish I could. HUGS!!
  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2012

    Aw, goldlining and Bogie....so sorry you are dealing with these issues.

    I had minor cording and a seroma in my armpit on my SNB side, but they eventually went away on their own. I did see an LE PT, and what she did made my underarm hurt even more. (She wasn't doing therapy, she was trying to show me how to work with the cording. The friction between her fingers and my skin really hurt.)

    I am still numb under my left armpit and down the back of my left arm, but luckily, no swelling. I started back at the gym, with exercises my trainer had researched for me on my kind of surgery and recon. He said they would help stretch and strengthen my muscles to get them in shape for both my weight loss and my upcoming exchange in September.

    I'm trying to be SO careful! I'm not even using weights to start...just getting my muscles used to the movements.

    Hugs, ladies....

  • fitzdc
    fitzdc Member Posts: 1,467
    edited April 2012

    Chicago was wonderful!  back home in time for follow up meeting with Onc tomorrow.  Been on tamox for six weeks now with no major SEs.  My only real issue is that I have that horrible 'iron bra' feeling from the recon.  Perhaps I need to add more stretching?

  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited April 2012

    Fitz, glad you had fun. Good luck with the onc tomorrow.

  • CookieMonster
    CookieMonster Member Posts: 1,035
    edited April 2012

    For those of you who need a good giggle, do I have one for you.

    I came home today to a letter from my former health insurance company (work changed carriers Jan. 1, 2012. This letter referenced medical care I received 12-15-11 (my UMX date). They wanted to know, "if this treatment occurred as the result of an accident or injury for which another party may be responsible." Man, if I could pin my BC on someone else, I'd totally do it, but no.  I thought that this was ridiculous. 

    So I called the number ready to tell them how crazy they were. The gentleman on the phone looked up what "triggered" the letter and apparently my reported tweaked elbow (as a result of the 14 hours of surgery) triggered it. Um, I received NO treatment for the tweaked elbow, so even if they did want to blame someone for it, it didn't matter because none of the day's expenses were due to that.

    The whole thing is just silly.

  • spunkyboobster
    spunkyboobster Member Posts: 738
    edited May 2012

    Cookie-I've gotten that same letter twice.  I wanted to write in big black magic marker "I have Cancer you idiots", but I didn't... Was your former insurance carrier United Healthcare?

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited May 2012

    Cookie - my letter was from Kaiser (or a company contracted by Kaiser) and when I called them, the conversation went like this:

    Chirpy Clerk: "Good morning! And whom do I have the pleasure of speaking with?" Check your records, Dummy, I keyed in my medical  ID number when your robot requested it.

    Me: (I give them my name.)

    Clerk: Well, hello, Mrs. X. We show that on 12.5.11 you had a procedure that involved your back, and we need to make sure that this was not due to an injury or an accident, and that there was no third-party liabilty.

    Me: Well, let me see.....on 12.5.11 I was having a double mastectomy due to invasive breast cancer. Yes, my back was involved because that is generally what you lay on when they remove your breasts.

    Clerk: (looooong pause) "Oh........Well.......I certainly didn't mean to upset you, Mrs.X."

    Me: "Honey, the time for 'upset' is long gone."

    Clerk: "Well, sometimes we don't get the correct information."

    Me: "Obviously. But in the meantime, if you do find a third party liable for my condition, could you please let me know? It sure would feel good to sue someone for this."

    Clerk: (Speaking very quickly now)........"Uh, again, I didn't mean to upset you, Mrs. X. Have a nice day!" CLICK.

    Argggggghhhh...... Yell

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