July 2017 Surgery

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  • Gigilala
    Gigilala Member Posts: 148
    edited August 2017

    i saw a lymphedema specialist too she said everything look good she prescribed me a sleeve she gaves me exercices to do at home .

    I'm not comfortable at night I wish I can sleep in my bed I miss my room

    And I'm not done I have another surgery September 1st 😢😢😢😢😢😢

    Do you start your hormonal therapy ladies?

    I start tamoxifen last week

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    I won't start until after radiation. But yes I will be on hormone therapy

  • lynae23
    lynae23 Member Posts: 85
    edited August 2017

    Shel that is great that you are at 85%! That was very rude of the PT to treat you like that! Glad you found another! Thank you for sharing the excercises you do! I do the wall walk one and shoulder circles but I am only about 60% after 3 weeks! Of course I have not been doing them daily but need to start. I got my last drains out Weds and it was wonderful! I also got my first fill of 60ccs...that definitely felt strange! Does anyone else feel things moving in your breasts? I feel something in my cancer side...almost like a ripping or it could be the saline moving? Its very strange but doesnt hurt.

    I slept in my bed for the first time since surgery but did not sleep well because I was so flat and it felt like bricks were on my chest all night so last night I added pillow under my back then 2 under my head & slept much better!

    I still feel like I am wearing an iron bra that is just not comfortable at all! I think I am just beginning to tolerate it & realize I will not be comfortable until I exchange for implants in a couple of months! I was excited the PS said it would be that quick! I cannot wait! These expanders just hurt & I still take advil around the clock!

    I bought another wig today to wear when I return to work. Its much lighter then my old one. Do any of you still wear wigs? My hair finally looks like a buzz cut but still very short!

    Giiana I am to start tomoxifen next month! Anyone have any crazy side effects that we should be aware of?

    Have a great weekend ladies

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    lynae,

    that is a phantom pain you are feeling i believe. i get the iron bra feeling sometimes too and i take tylenol. i am only 40 % on my ROM but then inwas just released by my PS to do exercises due to pain ..we are the same, exchange in 2 months. i cant wait

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    does any of you feel weird with the expanders when getting up from bed for example? like the side of the expanders gainst your your chest wall is glued and becoming unglued when you sit/ stand up? dunno if you can imagine it but thats tye best way i can describe it. i still hold the expanders when i sit or stand up against my chest to minimize the pain

  • Jumpship
    Jumpship Member Posts: 305
    edited March 2019

    Kae-yes the expanders always felt weird when I went from sleeping to sitting up.

    Shela-wow! Way to go standing up for yourself! And wow! I am two years post bmx, 1 year post-exchange and I am just now at 85%. Did those exercises right away but something happened in surgery that limited my range of motion. It got better with the exchange and revision. I've had 3 Pts and they are all different.

    I fired a podiatrist who looked at me funny. My toenails didn't do chemo well and I went to him for help. I told my regular doctor that if my plastic surgeon can look at my nipple-less chest with long scars and smile at his work then maybe I can expect respect from other doctors, who often don't have to see the scars

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    jumpship,thanks for the validation . for a while there i thought it was only me...

  • Lanne2389
    Lanne2389 Member Posts: 229
    edited August 2017

    kae - I have the exact same feeling with my TEs. It feels like they're "stuck" then peel off when I stand up or bend over. Feels also like the edges are grating ( especially the tabs that stick out) digging in - worse on the bottom. These TEs are driving me mad.

    For those of you getting ready for radiation (I've had 9 sessions), work hard now on your range of motion - you'll need to get your arms up and back, pretty close to your ear. The mapping appt takes 20-30 minutes. OUCH if you're still straining like I was - which just adds to the stress of being in the CT machine. I resorted to oxy and Ativan to get through it. Your first rad appt will take 20-30 minutes too as they will likely take scans (which have to be examined by the Dr in btwn, all while you wait, frozen in position, on the table) before the actual radiation. And then you're back the next day - but thankfully getting in position takes longer than the radiation. My rads take about 70 slow breaths to complete. It's still hard even after 2 weeks. PT is v v helpful, especially for the massage.

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    Lanne,

    that is exactly what i am feeling, the grating, too.had a bad day today. the edges of my TEs keep digging on my muscle that i have been crying all day. my GP gave me Prozac already as i have been crying from pain/discomfort and feeling generally depressed. i wonder if i did the right thing reconstructing. my sister suggested just to have them removed , as i did not plan reconstruction in the first place. i am thinking about it as i fear i might not tolerate the implants too. i cant breathe and i have lost 9 lbs since surgery. thanks for listening ladies....

  • Lanne2389
    Lanne2389 Member Posts: 229
    edited August 2017

    kae, I have noticed that sometimes the weird internal feeling can be from my shirt touching my skin - if I could walk around shirtless all the time I would. I'm hoping that having smooth implants makes a difference - my TEs are slightly textured with 4 small tabs the PS uses to initially attach them to your chest. He told me that those stitches eventually dissolve and the TEs can move around a bit - eventually they are held in place by scar tissue. (These are TEs placed over the pecmuscle).

    Does that sound right (or wrong) to anyone?

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    Lanne,

    thanks for telling me that as i dont know about that. i did notice there are tabs. hows the skin in between the TES? mine hurt , especially when TEs are compressed together to make a cleavage for example...

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    I was also told that my TE are stitched in but around a month or so the stitch will desolve. I sure hope so. It's weird, I don't have any discomfort on the right side, but the left (cancer side) I do. It feels higher on my chest. I hope this lets up some

  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    Hi all! Just wanted to update on my infection. On Thursday, I started feeling so much better - my pain level went down considerably and the flu like symptoms virtually disappeared. It makes me wonder how long I was fighting off the infection since I had been in so much pain for so long. Just in time for chemo to begin next week :/

    I do still have the tightness around my chest and pain in my ribs where the alloderm is connected. I think there is a stitch there and when I stretch, it pulls. It seems like once I stretch out a few times, the pulling goes away, so the pain is worse in the morning when I wake up. I am able to sleep on either side again too. My range of motion is probably 80-90%.

    I'm on two strong oral antibiotics and I worry that when I'm done with them the infection will come back, but hopefully they're doing their job and getting rid of any infection that remains.
  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    that is good to know toughcookie! are you doing TCHP next week

  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    kae, I find out on Wednesday If it will be TCH or TCHP or Taxol + Herceptin. I'm so scared of chemo. I know many of you all had chemo before surgery here and coming on here and reading your stories helps a lot. But I'm still so scared of the side effects.

  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    Hi toughcookie_21 If I followed you right are you BRCA 2 with a triple positive? I am also, I also got an infection on my left side after reconstruct resulting in removal of TE and 2 weeks antibiotics. Feeling better still not quite myself. I will be starting chemo on Aug. 24 and am very scared of the unknown myself. They say the good Lord doesn't give us more than we can handle, and we are also women so we got this. Stay strong!

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    toughcookie and kimber,

    you can do it! yes the Lord will not give us more than we can handle...i had TCHP..

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Toughcookie, and Kimber

    I was petrified of Chemo. I had Taxol, Herceptin, and Perjeta, Then 4 rounds of AC. I tried to keep a positive attitude. Doesn't work for all but it did for me. I will answer what ever question you have if I had that chemo drug. I will also be honest with you.

    Things will eventually be ok! We are here!

  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    Thanks ladies. Whenever I start doubting my ability to handle everything that is being handed to me, I come on here and remember that I can do this and still have a positive attitude.

    Kimber, yes I am brca2 and triple positive. My infection was also on the left side (non-cancer side). I'm so sorry that we are here, but take comfort in knowing that we can beat this as many before us have. I'll know for sure what the chemo plan is after Wednesday. I'm feeling much better from surgery and the infection, but I'm still not 100%. I do have my port surgery scheduled for Friday.

  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    Thank you Shelabela it is good to hear that the women on here are able to deal with the treatments that are given to us. We are neighbors I live in Minnesota. So do you still have to finish the year on the herceptin? Are you going to have to take the tamoxifen pill also? How were your SE? Stay Strong!

    toughcookie my infection was on the right side non cancer too. I am getting my port on wednesday I will let you know how it went. To be honest I had 2 surgeries for my infection one on a friday July 14 and another on the July 17 everyday is better, still not quite there yet. Do you know when you are starting chemo yet?




  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Kimberbir, are you going to Mayo for treatment?

    I will have herceptin every 3 weeks till February. I will also get tamoxifen for 10 years I was told. I already had 1 herceptin only dose and my side effects were ok. Very tired but that is all. I will start rads in September.

  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    Shelabela, yes I am at the Mayo starting chemo Thursday. Hoping to get it moved to the Northfield Mayo hospital, cuts the distance in half for me. The Mayo wants me to start treatment there incase of SE.

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Kimberbir, That is where I go also. The chemo nurses there are wonderful! I go tomorrow for Herceptin. There is a male Chemo nurse that is the best. He is great at starting the IV. Sent you a PM

    Shelabela

  • TWills
    TWills Member Posts: 679
    edited August 2017

    Well I should have known I would jinx myself with my post about feeling better. Looks like I have an infection. I had TE surgery July 10 and started radiation 3 weeks later(I'm half way through) and have been doing great until 2 days ago. Started having pain on my radiated side, Like deep muscle pain. I also have a high fever and chills. My RO has stopped treatment until I'm better. I saw my PS today and he put me on a strong antibiotic and I'll see him again in two days. He said it might have to come out. Well when I got home the hospital called to preregisterme. WTH Is two days on antibiotics enough to make a difference? He didn't say anything about doing it Friday! Now I have to figure out if I take both of them out or just the one. It's so frustrating!!

  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    TWills, ugh I'm so sorry that you got an infection. My infection felt much like that with deep pain inside the breast. My skin wasn't necessarily more red or irritated. Then I got the fever. I did spend 3 days in the hospital on IV antibiotics and came home with oral levoquin and doxycycline. My infection is gone and I feel remarkably better than I had before the infection started

  • TWills
    TWills Member Posts: 679
    edited August 2017

    Toughcookie_21, I asked if going into the hospital for antibiotics was a possibility and he said no, not sure why. I'm afraid that Friday is one of his few days he has at the hospital. I'd like to think that isn't the case but who knows. He was defensive and just kept shrugging his shoulders and saying that we knew this could happen. Yeah, I knew it could happen but didn't think you would give up so quickly.

  • Gigilala
    Gigilala Member Posts: 148
    edited August 2017

    sorry for your infection ladies

    I had my first appointment for radiotherapy this morning

    So I will have 33 treatment I will start 2 or 3 weeks after my next surgery ( 09/01)

  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    Shelabela I was there all day today too, tests and more tests, they keep talking me into the research studies, 8 tubes of blood later :0 Port tomorrow and chemo thursday the start to my road of recovery! I sent you a PM also. How are you feeling after your treatment?

    Kimberbir

  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    twills,

    Why did they start rads so soon? I was told they would not start for 5-6 weeks after surgery.

    Sorry you are having problems.


  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Kimber,

    have treatment tomorrow. Not looking forward to it. But gotta do what ya gotta do...


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