May 2013 surgeries

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  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    Good Morning Ladies!  Went to bed so early now up at crack of dawn..well wasn't even that ..lol.

    AMBNH=Can you still have inplants with radiation?  I was told those are off the table once you do. DIEP you still can but have to wait year afterward.  Of course, I could be wrong..My brain cells are packed full, this info may have been received incorrectly.  Also, thats a great idea about Maalox (thats like the stomach stuff right?)..I'll try that then..anything..I mainly going to do the ice and popcicles that I believe MelMcbee did..I've read that works..by the way, MELMCBEE- You have to keep in the whole time right? ..and does anyone know how long one has to sit there and take chemo?

    CHIMNEYMAE=Do you think that test is accurate?  What did your oncologist say about it?

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    Hi ckmoss. Yes, I have to wait for the diep surgery now until 6 months after the last rad treatment, which means I have to have my TEs in for the long haul. I'm hoping that the extreme discomfort will go away somewhat. I started doing my exercises yesterday so I'm assuming that will help loosen things up.



    However, despite it all, I continue to make myself step back and say, "Self, you are alive, you have your wonderful family and friends and you have a world class medical team supporting your recovery. Keep your chin up and fight like hell for the next several months and you will get through this!"



    I know, I'm weird. I talk to myself. ;)

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    Hi Cateyz2. Yes, it seems like there is a wide variety of medical instructions given post surgery.



    My PS said absolutely NO showering until the drains come out. It really sucked doing what I called the "3 part cleaning" but it was the best we could come up with. I'd wash my hair in the kitchen sink, then from the waste down in my tub and then my daughter would do my upper body with baby wipes. LOL, talk about a circus show!



    I held off on the stretching until the drains came out. They pulled and stung without the exercises! I didn't have the desire to make that worse!



    My PS said no ice since I had no feeling on my skin right after surgery. She didn't want me to damage my skin unknowingly.



    Hang in there!

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    thanks for the links melmcbee.  I'll watch them as soon as I wake up enough to focus. 

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2013

    AMBNH, may I ask what exercises you have been given for TE discomfort? I am having a delayed DIEP in September. My TEs are very uncomfortable and I've only had one fill.



    I work at a community college and I'm assisting with ACTs this morning. I have my drains well hidden so I don't freak these poor kids out. Outputs are down again today!!!!

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Ann, glad the outputs are down.  Do you have an appointment to go back?

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2013

    I don't have an appointment, but I was told I could go to the hospital over the weekend if my outputs were down and I wanted them removed. If they meet requirements tomorrow, we may make the 3.5 hour drive to Mayo. My local surgeon (who did my first MX) is out of the country on vacation, otherwise I would have them removed here. It's complicated!

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    AnnBR, first, let me tell you how freaking AMAZING you are to be going to work with drains. WOW!



    Brigham and Women's Hospital gave me a booklet. These stretches are for post mastectomy patients so I'm assuming they are going to loosen up the area where the TEs are.



    The exercises are: Hand Wall Climb Front, Hand Wall Climb Side, Butterfly Stretch, Single Arm Overhead Stretch, Leg Stretch, Heel Lift.



    Try to google those and see if diagrams come up.



    You are sooo close to drain removal. You are running that last 100 yards and you can now see the finish line. :) You will be crossing it very soon!

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2013

    Thanks AMBNH. BTW, I talk to myself too. And all my frustrations are poured onto this site as my friends and family have told me that I have an amazing attitude. I'm not the type of person who has pity parties although it does get discouraging at times. I love the support here, I feel I can vent without anyone being critical. It helps!




    Ann

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited June 2013

    Hi ladies. Man I wished I had known that about the maalox mouth swishing. That sounds like it will help. Theconcept of the ice during chemo is that it closes the tiny capillaries so the chemo drug itself wont get to your nails or mouth. Its the same concept as the penguin cold caps that some use to save their hair. However ice is a lot cheaper than the co l d caps lol.

    Ann I dont know if my body just became use to the expanders butit seemedlike after the first few fills they didnt bother me so bad until the end.

    Oh I also have implants and I had radiation. I had to have my tes finished filling before I started radiation and then they deflated my non cancer side. I had to wait for three months after rads to get my implants.

    Chinneymae I am so sorry for your loss. And I pray for good results on your onco test.

    Lets see as far as chemo went I probably was in there for at least five hours. Because the routine was to go in get comfortable they would access my port and take blood then to send off for labs. While I waited on my cbc results they would start infusing the premeds which i think was like steroids, phenergan, and I cant remember what else. Anyway that took about an hour then the cbc results would be back and if my wbc were ok they would fix the bags to start infusing. Each bag took about an hour except the red devil which is adriamycin and it was pushed by hand so that didnt take long and when its all finished they would flush the port and deaccess it and you get to go home. Maybe some days I was out quicker.

    Sweetpickle how are you feeling?

    Healing hugs to all

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  • Run4Us
    Run4Us Member Posts: 78
    edited June 2013

    Hi All.... Thanks for the encouraging words.  I will go back and read what helpful tips you guys have regarding chemo.  I can't believe how much I missed from just being off the board for a few days.  It has been a busy few days - after finding the Oncologist I liked things have been moving along quickly.  Tuesday I have an appt with the surgeon regarding the port.  I think it will be scheduled towards the end of the week and then I should be starting chemo the week after.  Yesterday I went wig shopping with my girlfriends....I have to say it was a great experience.  I found a wig that looks just like my new short haircut.  I am so happy.  I'm not sure how to put a picture up or I would show you guys...because I was amazed!!! 

    I want to thank all of you for being here.  Even when I have been down I come on here and you guys put a smile on my face.  :-)

    Lisa

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  • mshelton
    mshelton Member Posts: 66
    edited June 2013

    Just saw the oncologist on Friday.  All good news in general.   The 5 years of endocrine therapy is recommended.  The Onco test was ordered to see if chemo will be recommended.   Will have an appointment with the radiologist next week too.  My surgery margin next to chest wall was less than 1 mm thus the rads.  Now I'm wondering about having the expanders (which I just found out were half filled at the time of placement).  I was wondering why it looked like I still had boobs sortof.  lols  Havn't I read somewhere that there may be problems with rads and having expanders in place?  Anyone know?   Guess I need to talk to the PS next week to ask.  Hope to get the tubes out soon.  Think I might get rid of two of them early next week as the output is getting low.  Guess I should ask about exercises too altho seems that I have full range of motion in both arms.  

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    mshelton, I had no problems with my arms until this week.  It doesn't always appear right away.  I noticed yesterday that I had a pulling from my underarm to my elbow on the side that nodes were removed.  Seeing the PT on Wednesday.  Meanwhile, trying to stretch it and rub it out.

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  • Chinneymae
    Chinneymae Member Posts: 339
    edited June 2013

    I had my bmx on May 8th and twice this week I felt like someone had stuck a lit match up under my arm between the elbow and the armpit. It only lasted a few seconds, but it felt like it was burning me! I wonder if it may be because the feeling is slowly coming back and the nerves are reacting or something.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited June 2013

    mshelton, I had tissue expanders and rads with no problems. I got fills all during chemo and had to be completely filled by the time I started rads. When I went for my first visit they did a ct scan for radiation planning and at that time I went back to my ps and he deflated my non cancerous side so it wouldnt interfere with the rads because of the angle of the beam. Than I waited 3 months after radiation to get my implants.

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    I took some of my tape off my incision today.  Not looking bad (actually looks better than with the tape on).  Have about 3 pieces left on one side, about 4 on the other.  A few places it's not quite healed yet, but overall I think it looks good.  I was surprised how big the incisions are.  About 8-10" on either side (I have a 2 inch space in the middle of my chest, otherwise I was cut armpit to armpit.

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  • Chinneymae
    Chinneymae Member Posts: 339
    edited June 2013

    Mine is the same way, Gowiththeflow. My tape came off a couple weeks ago. I kept putting vaseline on it and it just slipped off. My PS said to keep using the vaseline so I have been and the scars are starting to look much better.



    I will find out this week if I will have to have Chemo or not. I'm sure praying I don't.

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    chinneymae, I used vitamin E oil on my neck after my thyroid surgeries.  I had two surgeries, two weeks apart, and you can barely see the scar.

    I'm afraid to put anything on my incision until everything is closed up.  I have one little spot on one side (and stll have two pieces of tape on)

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  • Run4Us
    Run4Us Member Posts: 78
    edited June 2013

    So... I woke up this morning feeling like there is a tight line from my armpit to almost my elbow.  It is on the side where I had the axillary dissection. It feels uncomfortable to stretch.  Could this be cording? I thought I read someplace on here where it was mentioned.  Any suggestions on what I should do? I'm hoping it doesn't mean I'm getting lymphadema (sp).

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Run4us, I woke up with that on Friday.  Call the doctor about getting some physical therapy.  I go in for PT on Wednesday morning.  Meanwhile, I've been trying to gently massage the area and gently stretch my arm.

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  • AnnBR
    AnnBR Member Posts: 853
    edited June 2013

    Halelujah, Praise the Lord, MY FINAL TWO DRAINS WERE REMOVED TODAY!!!! It really WAS the only birthday gift I needed. When I was at the doctor's office last week he said if I met output requirements on a weekend, I could go to the hospital and have them removed. So I did. I feel SO FREE.



    Chinneymae, I will keep you in my prayers this week.



    Ann

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  • Chinneymae
    Chinneymae Member Posts: 339
    edited June 2013

    Gowith: my PS told me to just use the vaseline until everthing was healed good and then I can use cocoa butter, vitamin e oil or mederma. I sure hope this scar heals good and doesn't look bad. They are so long.



    It's amazing what they can do with surgery now. I couldn't believe it when I woke up and didn't have any bandages! I thought, My God this things gonna come open and I'm gonna bleed to death. lol

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  • Chinneymae
    Chinneymae Member Posts: 339
    edited June 2013

    AnnBR: Congrats on the drains. That was one of the happiest days I had in a long time when those things came out.



    Thanks for the prayers I can use all I can get.

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  • GoWithTheFlow
    GoWithTheFlow Member Posts: 727
    edited June 2013

    Ann, congrats and happy birthday!!!!!!!  I hope you sleep well tonight!

    Chinneymae, FYI, mederma made me itch like crazy.  Apparently, a lot of people have that problem.  Just thought I'd give you the heads up and maybe keep you from going crazy scratching.  I'll put some vaseline on tonight.

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  • melmcbee
    melmcbee Member Posts: 1,119
    edited June 2013

    Congrats Ann, I know you are doing a happy dance.

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  • ckmoss
    ckmoss Member Posts: 613
    edited June 2013

    I was taking the past two days off from thinking (trying not to), or talking about this whole madness..But couldn't resist a peek in...and it can't go without saying...

    Ann=OMG WHAT A GREAT BIRDAY PRESENT FOR YOU!!!....I am sooooo happy for you!!!!!  Enjoy!!!!!!

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    AnnBR, that is FABULOUS news and the best birthday present! I'm so happy for you. It's such a great feeling - enjoy your freedom! :)

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    Chinneymae, I will keep you in my prayers that you get good news this week! Hang in there - as we all know too well, cancer is a "waiting" game. :)

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  • AMBNH
    AMBNH Member Posts: 119
    edited June 2013

    Sweetpickle, thinking about you and hoping all went well. :)

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  • cateyz2
    cateyz2 Member Posts: 419
    edited June 2013

    AnnBH

    Congrats on the drains!!!

    Spent most of the day relaxing outside on the patio and now its time to curl up in the recliner dor the night.

    1st appt with BS tomorrow, have seen PS 2x since surgery, since my drainage has been about 18-20ml on each side for the last 3 days hopefully mine will be gone tomorrow

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