Hey My Her2 Sisters

Options
13»

Comments

  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    Hi Jackboo, I don't know but maybe you've got the right idea. I just know my onc was very excited and this is the first time I wasn't reminded that I have an aggressive cancder witht he Her2 but was told that women are living long lives now with it. I sure feel encouraged by that.

    · Share on FacebookShare on Twitter
  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    >Hi Jackboo, I don't know but maybe you've got the right idea. I just know my onc was very excited and this is the first time I wasn't reminded that I have an aggressive cancder witht he Her2 but was told that women are living long lives now with it. I sure feel encouraged by that.

    · Share on FacebookShare on Twitter
  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    I am 5 1/2 years out from diagnosis; 5 years, 3 months out from the end of chemo; 4 years, 3 months out from the end of herceptin.

    My oncologist counts time from the end of chemo and was thrilled I hit the 5 year mark from chemo as my chance of recurring drops down next to nothing from now on.

    At this point, I am NED (and hope to be so for the rest of my life) and feel great.  As a matter of fact, due to my exercise, I feel and look as good as I did in my 20's.  For a woman that will be 62 in September, that is saying a lot.  Of course, I don't look like I am in my 20's, but people usually think I am 15-20 years younger than I am.

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    Sassa  Nice to hear. i am 7 months PFC can't wait until I am where you are.. What kind of exercise do you do?

    · Share on FacebookShare on Twitter
  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    Ossa,

    I started out with PT to regain the use of my shoulders after the mastectomies.  I continued with the PT exercises  after being released from PT and started riding my bike again and doing aerobic exercises and strength building (core).

    I have recently started going to exercise classes offered at a local health center and I now do stability ball, body sculpting, yoga and zumba.  I also try to hit a belly dancing class when I can as I belly danced over 30 years ago and still enjoy it. 

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2012

    Thanks for all of the HOPE, ladies!  I appreciate it so much.

    Just finished Taxol with Herceptin, now Herceptin continues...

    Best wishes to all....

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012
    Sassa... You had shoulder issues to.. hm thought it was just me. Had a few issues before MX/ Rads, but it has become bad now. some days i can hardly lift my arm, Seeing PT on Thursday, hope she can give me some exercises to help. I really need to get going on exercises. thinking of joining yoga.. Not ready for Zumba yet as I just had my recon.. Now that my "girls" are smaller (went from a D to Probably a B) my stomach seems so much biggerFrown  And i know I am the only one who can do something about it...
    · Share on FacebookShare on Twitter
  • Sassa
    Sassa Member Posts: 1,588
    edited May 2012

    Ossa,

    I was also large breasted before my mastectomies ( I will admit to being a DD because the true cup sized bummed me out so badly).

    Part of my issues stemmed from damage from just carrying Massive Matilda and Big Bertha.  I had neck and shoulder problems from the weight.  Having first the right side off caused even more problems from the body asymmetry.  When the left side came off six months later, my muscles had no idea what to do and my left shoulder froze completely, I couldn't move my head from side to side or back, and my right shoulder wouldn't move back.  PT really helped.

    I decided to do delayed reconstruction with silicone implants two years after my second mastectomy.  Having some weight put back on my front seemed to help the muscles function as they were designed to carry something up front. 

    I went much smaller.  I had 800 cc implants because of a wide ribcage and I needed the coverage.  The projection is about that of a B cup.  When I had the mastectomies, I lost 15-18 lbs in breast tissue.  The two implants weight a total of 3.2 lbs together so I have a lot less mass upfront and I don't need to wear a bra.

    Be careful doing the yoga.  You may be having balance issues because of the nerve damage from chemo.  Coming out of some of the yoga positions still causes me to lose my balance.

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    sassa  Thanks for the laugh..LOL   Imagining you walking around carrying Big Bertha and Massive Mathilda.. priceless.. I had expander filled to 530cc and had a 430cc implant put in. My other one had a lift and reduction.. So far I don't know what to think about them.. Sure hope they will settle a bit... Not used to seeing my (one) nipple pointing out,, been pointing south for so many years that it is almost a shock every time I look in the mirror.. Also it looks like it has been pulled to tight a couple of places.. My foob had a couple of folds sure hope they will even out

    · Share on FacebookShare on Twitter
  • mt4ever
    mt4ever Member Posts: 105
    edited May 2012

    Hey guys I had my 3rd round of TCH yesterday and my mom was with me and of course she was asking about would they do a body scan after the chemo to make sure it had not spread.  The FNP said no they would not do a scan because my tumor was 7 mm and there was nothing in the lymph nodes.  Does this sound okay?  I was concerned about it maybe getting in my blood and spreading but she said that cancer cells cannot survive in blood? Does that sound right? 

    I was not too concerned but now am starting to question myself!   

    · Share on FacebookShare on Twitter
  • RoulaG
    RoulaG Member Posts: 239
    edited May 2012

    Mt4ever, I am not sure if that is correct, but I hope it is.

    · Share on FacebookShare on Twitter
  • vickilind61
    vickilind61 Member Posts: 338
    edited May 2012

    mt4ever, my MO has not and isn't planning on doing a PET/CT scan due to miniscual node activity.  Micrometasis is what mine were called.  I am not worried, but I LOVE my MO.  She has been doing this for years and is highly respected here in the Springs.  As for sayinng cancer can't survive in blood, well, that IS concerning to me.  What is leukemia?  Cancer of the blood, right? But, as for no scan, I am not worried about not getting one for me, but everyone is different.  You need to do what is right for you.  

    Hope that helped? 

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited May 2012
    Mt4ever remember scans can't pick up very small tumors. So it would stand to reason if you tumor was small, and no nodes:
    A. the chances of distant mets is low
    B. even if you had distant mets (knock on wood you don't) I doubt the scan would even pick it up.
    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    Ladies.. Have any of you needed to go of Herceptin only to be put on heart meds. then back to Herceptin? 

    Got my latest Muga result today and it has dropped yet another 3% So now the drop is 14% down to 47%  Being sent to a cardiologist in two weeks. MO wants me on heart meds to see if they can bring my EF up so I can continue treatment  Only got five left...

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2012

    Ossa - I was refused Herceptin today as ECHO results show heart decline - don't know how much.  Honestly, I didn't want to many details because I would research it to no end.    MO and Cardiologist think it is temporary, gave me a month off to repeat ECHO, and go from there.

    I finished Taxol with Herceptin just last week, so have 3 months of Herceptin in. Don't know what to think about it. 

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    Denise-G  hope your EF will climb so you can continue your treatments

    · Share on FacebookShare on Twitter
  • jackboo09
    jackboo09 Member Posts: 920
    edited May 2012

    Hi Ossa

    I have just finished my Herceptin year. I did TCH chemo following a lumpectomy. My baseline MUGA was 53. The next one was a couple of months into treatment and had fallen to 47 so they put me on Ramipril medication to help my heart. My onco wanted me to continue tx. Next scan was up to 50. I did however have issues with breathlessness and heart palps so I was checked out more often than your average patient. The next MUGA was 36!!!! They stuck me in a wheelchair and sent me straight for an echo. This came back as 65. ????????The last echo I had was around 60 and I will have a final one shortly.

    My advice is by all means listen to your docs but take the overly cautious approach too. My onco has me pegged as an anxious annie. he's prob right as the tests are ok now but Im personally glad I pushed and reported all unusual symptoms. (3 visits to ER)

    Good Luck 

    Liz

    · Share on FacebookShare on Twitter
  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    I'm scheduled for my final Echo after finishing Herceptin but does anyone know if we need an Echo or Muga during the 5 years on AI? 

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited May 2012

    Fitz I only had the initial MUGA. Never had one during chemo/herceptin or after I was done. All oncs do things differently although I think I win the prize for only having one MUGA

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    Fitz 

    I had a Muga before treatment then every three months but since my EF counts are dropping I had one a month after my regular scheduled one and one again a month after that..

    · Share on FacebookShare on Twitter
  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    Ossa, by treatment do you mean the time you are on AI?



    Lago, you definitely get the prize.

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited May 2012

    Fitz.. I am on Hercepitin (also Tamoxifen) Herceptin is on hold for now

    · Share on FacebookShare on Twitter
  • maro
    maro Member Posts: 2
    edited May 2012

    hi

    i was diagnosed with her2 in april,,i had 2 biopsies,,in may 11 i had my tumor removed nd biopsy for the glands ,,my appointment for the result is 29 may the doctor said she might remove the bresat nd i should go for chemo,mi haven't talked much with her about my situation,,but on the 29 may all will be clear to me,,,i'm 49 as i got my cancer i had my menopause,,

    may god be with all us

    · Share on FacebookShare on Twitter
  • Denise-G
    Denise-G Member Posts: 1,777
    edited May 2012

    Maro - thinking of you..you have been through alot and waiting is so difficult to find out the rest.

    My thoughts and prayers are with you!

    · Share on FacebookShare on Twitter
  • Fitz33
    Fitz33 Member Posts: 243
    edited May 2012

    Maro, I hope you can relax a little until you get the results.  It's hard but you'll make it through this ordeal.  We're here to answer any questions.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited May 2012

    Maro The beginning, not knowing and waiting is the hardest part.

    I too was diagnosed at 49. Chemo put me in chemopause. Just wanted to let you know my sister-in-law yesterday told me I "really good." This Aug. 31st will be 2 years since my BMX. My hair would have all grown back my now but I decided to keep it short. Everyone loves it.

    Keep checking in with us. The BC.org and us HER2+ sisters will hold your virtual hand through this!

    · Share on FacebookShare on Twitter
  • Ossa
    Ossa Member Posts: 919
    edited September 2015

    To quiet around here, how are you all doing?

    · Share on FacebookShare on Twitter

Categories