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ER-, PR-, Her2+ Roll call

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  • caroline71
    caroline71 Member Posts: 14

    Hi I am going for a pre operation asssment on thursday 6 sept  and hoping to have my operation next week I am not even afraid of that I am just drained going back and forth to hospirals  for testing to be done now I meet with my surgeon ;ast week she was a lady she told me if this reaccurs it will be ubn the liver the bones or the lungs why did she have to tell me do you think ???do you think becayse of the cancer it is and I am very high risk a lot of family have died from cancer maybe thats why she told me I dont know  I am ok at the moment but just so tured and not sleeping right times at all I will only be kept in hospital 1 or 2 nights they said I think thats terrible have to go home then to my house and I PRESUME THE HEALTH CARE NURSE WILL HAVE TO CHANGE AND CLENA DRESSING  sorry about the caps  so I wish ye all luck and will keep ye informed  love caroline xx

  • lkc
    lkc Member Posts: 182

    Hi caroline, I am sorry to hear this. I think it was simply your doctor being insensitive. Sometimes the docs don't think before they speak. My surgeon was so gloomy, but he was great at what he did. anyway, don't take too much stock in what yours said. You'll be fine. Ask your nurse about the dressings and any other questions you have before.

    it's quite normal to be in the hospital 1 or 2 days. Also if your sleep continues to be disturbed ask for some RX. You will feel better if you're rested.

    make sure your bedroom is comfy, have button down PJs and drink lots of water. Come here often , just for support. You will reassured, we've all been there. BTW, I have a very very strong hx of BC, and I am out and totally well after 7 years.

    God Bless!

  • LSU
    LSU Member Posts: 2



     Well here I am at the beginning of the second leg of a journey I never intended
    embarking upon. I elected a bilateral mastectomy (8-15-12) because I could not
    envision myself with one large breast and nothing to counter balance it. Also
    the breast surgeon and plastic surgeon started to back pedal on the reduction
    of the large breast at the time of the mastectomy. The prosthesis would have to
    be huge and heavy. I lost more than 5 pounds of breast. More than 3 weeks out I
    am strong, but still sore and beginning TCH-6 cycles of 3 weeks each and then
    continue the Herceptin for a year on Sept. 10th. I had a port installed last
    Friday and it was a very disconcerting recovery. The radiology group only
    prescribed Tylenol for pain. The pain was so great that I downed 3
    Percocet--more than at any time after the mastectomies. Also the twilight sleep
    drugged feeling lasted for 3 days. After the mastectomy (2+ hours) I could have
    walked from the recovery room to my 1 night stay. I was alert and never felt
    the least bit foggy. I was doing leg exercises in the recovery and chatting
    with my well-wishers who came to cheer me on. Pretty amazing!

    I am hoping that I do well with the chemo. I am planning as much activity as I
    can tolerate. That will include swimming if I can get all these incisions
    healed up.



     



     

  • Jaimieh
    Jaimieh Member Posts: 925

    Just checking in.  I am 3 years 8 months with a lifetime ahead of me.  My body is still recovering in some ways but in others it just feels like a bad dream. 

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 45

    Hi All...thought I'd drop back in and say hi:) I am now 10 years since diagnosis and enjoying life...boys grown up and out experiencing the world and life.

    I'm pretty involved with the BCNA in Australia as a consumer representative and community liaison...organising a Bra Art exhibition in October for some fun and fundraising...hoping we get some great creations and celebrate our breasts with some humour.

    Good luck to all Love Sharon

  • Alicethecat
    Alicethecat Member Posts: 77

    Hi Sharon

    Thank you so much for your post.

    It gives us hope!

    Alice

  • JRyan
    JRyan Member Posts: 102

    I have been doing quite a bit of research lately trying to ease my mind so I can put this experience on a back shelf for a while!  I tested BRCA1+ right after my cancer was found. My mother had the same mutation, and it wasn't that big of a surprise when the lump showed up.  I have noticed that there are not many people that are HER2 + that also tested positive for BRCA1.  Are there any out there like me?

  • caroline71
    caroline71 Member Posts: 14

    Hi A while since I have been here I had my right breast taken off on the 12th September also 10 lumph nodes  I am going back on chemo next tuesday 6th called FEC  3 seesions over 9 weeks This is my 4th new chemo My body was so sensitive to all the others which was TC  TAXOL AND AC I suffered nterrible side effects with odemia I cold not walk so now I had 5 chemo before surgery and my onc feels I need to finish out my chemo with 8 sessions  if this works for me then I have 35 sessions of rads  its a long road  I like some done my own research I felt here in Ireland they are not up to date with triple negative  I am afraid to be honest of it coming back I am very high risk they told me I am just gone 41 was told on 19th April  the flap under my right arm is still very sore wish you all well in your jorney 

  • sherrybutler
    sherrybutler Member Posts: 1

    Hi Sharon! Glad to hear you're 10 years out. I am so nervous of it coming back and I have yet to start the last of my treatments, radiation. I have a little girl to live for, she is 2. I will be on Herception for a year and just had all my nodes removed. Tomorrow I will get the results from the node removal. I am hoping they were are clear from the chemo I was on. FEC-D.

    Here's to another 10 years Sharon ;)

  • caroline71
    caroline71 Member Posts: 14

    hi all I am starting chemo again tomorrow FEC its called this is my 4th new chemo had TC AC andd taxol had a reaction to them all so I had 5 chemo sessions and they want to give me 8  I had my right breast off 12th September 2012 still have radation also  I just hope this chemo works I also had 10 lymp nodes removed  I cant understand why they want to do more chemo when I am over the operation and they said cancer free I am confused maybe it sound silly but would anyone know why they want more chemo if they said cancer free I just dont get it  thanks Caroline

  • sewingnut
    sewingnut Member Posts: 475

    Caroline, I see you had 10/10 nodes. The Oncs are probably being cautious because of the amount of lymph nodes involved. You are also TN so chemo & rads are your only options. Hopefully you will be able to tolerate the new chemo better.

  • caroline71
    caroline71 Member Posts: 14

    Thank you yes I think yo are right just hope this chemo works for me will keep you informed :-)

  • Aussie-Sharon
    Aussie-Sharon Member Posts: 45

    Hi Caroline, from my understanding they say you are cancer free once they remove all the cancer, but if you have had node involvement or close margins they usually like to give chemo to make sure they get anything that is microscopic.  All the best with this regime.

    Sharon x

  • crystal34
    crystal34 Member Posts: 5

    I'm her2+++ I just started chemo 2 weeks ago im currently taking taxotere, carboplatin and herceptin every three weeks for 6 treatments and the heceptin i will take for a year ugh my third day after chemo was the worst i have ever felt in my life and didn't know if i could go back and do it again im so worried that it's going to feel worse and worse the more times I go or is it going to be the same every time I don't worry about my cancer what i worry about is all the other things that can happen or will happen such a scary thing to go threw i don't know how 70 year olds do chemo it messed me up for 4 days i feel a little normal now but gosh i feel so sad for anyone doing this at a older age then i am.

  • sewingnut
    sewingnut Member Posts: 475

    Chrystal,

    The first TCH was the worst for most of us. Bodies are screaming WTH just happened?!!? You will get into a routine and start to know when to expect which SE's. Biggest part is Drink, Drink,Drink.  Water in = chemo out faster.  By #4 everything was going on schedule.  By #5 and #6 I was very tired when I got home from work.  You will notice a big difference when you get to Herceptin alone.  Good luck.  You can do this!!

  • crystal34
    crystal34 Member Posts: 5

    Thanks im terrified of the herceptin is going to kill my heart I have smoked since i was 15 now i have just went to one cig a day and not at once just like two drags and put it out i know it is so stupid to smoke i even tried the pills my doctor gave me and it didn't work all the way i had to back off the full dose of the pills he gave me my body could not handle it all i did was cry and im not a cryer lol hopefully i can just scare myself enough to not pick it up tomorrow that seems to work better for me lol but thank you for your info

  • JRyan
    JRyan Member Posts: 102

    Hi crystal34,

    There is no doubt that this is hard. You can do it. I smoked for 30 years. Quit the day before my bmx. Haven't picked up one since. You will when you are ready. Drink lots of water and get your rest. ((Hugs)))

  • crystal34
    crystal34 Member Posts: 5

    Sorry im new at this what is a BMX all i can think of is the bike lol

  • sewingnut
    sewingnut Member Posts: 475

    BMX is bilateral mastectomies. You'll catch on to all the other acronyms :)

  • crystal34
    crystal34 Member Posts: 5

    thank you so much

  • caroline71
    caroline71 Member Posts: 14

    Hi All  had the doctor last night around 7 I could not breath I was in an awful way plus the sleep is a big problem what happened was I got indigestion and heartburn never had it before My breathing went all shallow I got some fright mam came over to me side effect but the sleep part was making me weak I had only up to last night slept 6 hrs since wed so she gave me relaxers for 5 nights I was so weak told her all about the new chemo etc I have it got a week tomorrow and I am still not right but I did manage to sleep last night woke up 3 times in pain but had sleep how are you xx I am on chemo called Fec now this is my 4th new chemo good luck to you all x

  • nevo84
    nevo84 Member Posts: 55

    Dear all

    Nov. 10 is my mother's second cancerversary and since she WAS Her2+ I think she passed a huge yearmark. She is SO happy now and lives her daily life and goes to her check ups regularly. We are happy and sometime we forget about the days and moments that we went through. I hope we will celebrate her 30th cancerversary and I'll let you know. lol

  • caroline71
    caroline71 Member Posts: 14

    Nevo that is great news I wish her many more years of happiness and good health lots of love from Ireland xx I have just realized am I in the right forum for my cancer I have triple negative breast cancer  if I am not can some one gove me the link I am not great on computers  Thanks in advance 

  • Nanawannabe
    Nanawannabe Member Posts: 5

    Caroline,

    Here's the link to the Triple Negative Forum....

    http://community.breastcancer.org/forum/72

    I hope your pain is less and your sleep is more. 

    I just got done facebooking with our friends from Donegal and Galway!

  • SeattleMama
    SeattleMama Member Posts: 10

    I'm here! - {{flailing my arms up in the air so you don't miss me}}

    >:( I don't wanna be in this club, but sure nice to read good information, happy thoughts, get good vibes from the sisterhood.

  • Graceembraced
    Graceembraced Member Posts: 86

    Welcome Seattlemomma! Sorry you're here, but glad you found us!

  • SeattleMama
    SeattleMama Member Posts: 10

    Awww, thanks Grace :)  happy Bday ;)

  • JRyan
    JRyan Member Posts: 102

    Welcome Seattlemomma. As Graceembraced said, sorry you had to, but glad you did.

    I noticed in your tx line that your chemo changed. Did you have a reaction to the taxotere? Just curious.

  • SeattleMama
    SeattleMama Member Posts: 10

    thanks for the warm welcome, jryan.

    You guessed it.  I had an allergic reaction to the Taxotere that my oncology office had never heard of or seen before :P  Swelling and horrid rash.  The worst part, I SAW the results, from the very first session. Breast actually looked better, no more pain (in breast or arm, which they attributed to lymph nodes on an arm nerve).  So, I was put on steroid regimen and it finally subsided a few days before next infusion. (3 weeks of reaction heck)

    I went into next infusion with the strength to take the Taxotere and its effects and just ask to start the steroids when the iv steroid would wear off (about 3 days after).  Onc wouldn't do it :(  Yes, a frown, only because like I said, I saw - we all saw the positive effects from just one session.  But, alas, they wouldn't allow me to go through that again.

    Now I'm on Carbo, and half way thru 6 cycles.  Was supposed to have one last friday (#4), but the Carbo plummets my platelets and it was postponed till tomorrow.

  • linali
    linali Member Posts: 185

    Hi Caroline,

    You would be most welcome on the triple negative thread, There are a few of us from Ireland on the TNBC calling all UK. 

    Sorry to hear that you have been having a tough time. We are being treated in the same place, Limerick and I had 6 FEC chemo. I hope that this one is a success for you. 

    Let us know how you are doing. I am sorry that I missed you on day of your surgery but I go in and out of Limerick and we may meet up.

    Sending you healing thoughts.

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