Visit Komen.org
Lower Your Risk
Prev Thread Prev Thread   Next Thread Next Thread
 What is Inflammatory Breast Cancer? From a survivor
Change Page: < 12345678 > | Showing page 5 of 8, messages 41 to 50 of 79
Author Message
AlaskaAngel

  • Total Posts : 45
  • Reward points : 1345
  • Joined: 6/25/2010
  • Location: Alaska
  • Status: offline
Sister with Sister with IBC - Thursday, July 01, 2010 6:06 PM
Thanks Trish, for some genuine personal and observational info about the taxanes. Big Sis is mostly a real wuss. (She thought tamoxifen alone was tough going last time around!) Hopefully she will be among those who find a taxane easier to do than the A/C. Everybody has a choice to make about these things, and she has to make her own. I'm hoping to find out whether or not she would fit with having the taxane with trastuzumab or with lapaitinib or with erlotinib, before she "uses up" her taxane cycles without any of those.
 
Hoping away,
 
A.A.
 
Dx 2002 age 51 - still NED
IDC 1.6 (Stage 1, T1c), some DCIS
ER+/PR+,HER2+++
bc granny, mom, sis, aunt, cousin; OVCA aunt
 (sister had IDC stage I, just re-dx'd with IBC)
BRCA 1 & 2 neg
CAFx6, IMRT rads, tamo 1 3/4 yr
radiation-induced fibrosis
no taxane, no trastuzumab, no AI
Trials: Early Detection OVCA; 2004 use of low-dose  
  testosterone by bc survivor
On the road again, 3 mi/hour, 1 hr/day; stepper;   stationary bike 
Tricia Keegan

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
Re:Sister with Sister with IBC - Saturday, July 03, 2010 3:10 AM
AA,

If she's her2+ I imagine they'll definatly add herceptin or one of the other's to the mix.  So far it worked for me! :)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
barbwire930

  • Total Posts : 10
  • Reward points : 1020
  • Joined: 5/16/2010
  • Status: offline
Re:Sister with Sister with IBC - Saturday, July 03, 2010 9:30 PM
hi all,
I just finished my second round of taxtoere and this stuff is killing me the taste is so horrible and the mouth sores are so awful i have not been able to eat. all the food is so bad the only thing i can do is gag so now I'm really weak. the first treatment i passed out while parking my car and did some damage and time in the hospital. this treatment i again couldnt eat and got so weak and had to go to the hospital again, and my face all red & swollen, tongue swollen so bad both times i couldnt talk! skin on my feed red and burning. I am thinking of asking my onc to switch drugs or hospitialize me for a week til it passes! any advice?  thank you
Tricia Keegan

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
Re:Sister with Sister with IBC - Sunday, July 04, 2010 3:37 PM
Hi Barbwire,

I'm no Dr but it does sound like this is not a normal side effect but an allergic reaction to this drug. (Tongue swelling is not normal)....did they give you benedryl by iv before the taxotere?
I'd definatly speak to your onc about this, sometimes simply slowing the drip can help, but maybe taxol may be more tolerable for you.   I definatly would'nt continue with this drug, as to the mouth ulcer's, if you check out the chemo forum there are lots of tips to help, I think I had nystatin which helped but ask your onc for something for this also.  :)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
daisy22

  • Total Posts : 4
  • Reward points : 65
  • Joined: 8/12/2010
  • Status: offline
IBC - Friday, August 13, 2010 3:25 PM
I felt a small hardish area on my right breast in April 2008, so I went to the Dr immediately and had a mammogram and an ultrasound.  The radiographer said there was nothing serious, so my doctor prescribed some hormone cream.  2 weeks later my breast had swollen considerably and had developed a bloody discharge from the nipple. I went back to the doctor who sent me off to a specialist.  The specialist didn't think there was a serious problem, he took a swab of the blood from the nipple and sent me off to see another specialist as he thought I had a ductal problem.
 
The 2nd specialist didn't think I had a serious problem, he couldn't detect anything from the mammogram or the ultrasound but he said I needed an operation to remove all the ducts.
 
6 weeks later I was booked in for surgery to remove the ducts. By this stage my breast was as swollen as a melon and itched all the time.   The tumour mass was more than 8 cm.
 
When the doctor came to see me after surgery he had bad news, I had cancer!  It had been 9 weeks since finding the initial hard area.  I was shocked, devastated, horrified, thought I was going to die, no one I knew had ever had cancer before so I didn't know what to expect.
 
When I saw the oncologist he could see immediately that it was cancer from the mammogram and ultrasound.   Then followed 6 rounds of taxotere along with Herceptin as I was HER2+.   The chemo shrunk the mass very well and I had a complete mastectomy with lymph node clearance in November 2008, followed by radiotherapy x 5 weeks.
 
I'm pleased to say none of my nodes were affected and they got out all the cancer and so far I have been trying to get my life back to normal.  It's hard though, still.
 
I still have an ache in my ribs on the same side, sometimes it is more sore than other and have problems with pain/numbness/burning in my arm.
 
But, I am here today and am thankful for that.
 
Take care all
Tricia Keegan

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
Re:IBC - Saturday, August 14, 2010 8:24 AM
Hi Daisy,

I'm so glad you had such a good response to the chemo, and have managed to go forward and enjoy your life after bc!!:)
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
Ruth Coates

  • Total Posts : 2475
  • Reward points : 1635
  • Status: offline
Re:IBC - Saturday, August 14, 2010 9:24 AM
Hi Daisy,  Thanks for your story.  Unfortunately it is all too common a theme of Drs not recognizing or refusing to accept the possibility of IBC.  I have run into those myself.  Fortunately for me, I am a nurse with contact to a good oncologist who steers me in the right directions...
I'm glad things have worked out for you and that your nodes had no involvement.  Tht is such a good thing with this disease!
Good luck!  Come join us on facebook if you like.  You can find me there as well.
Love Ruth
Paw Paw MI 
6/06 IDC,7/06 IBC (Inflammatory BC) RT
2 lumpectomies still no clear margins
chemo 8/06-12/06 
Bilat mast 1/07
rads 2/07, arimidex 6 mos, 1/08 femara, 10/08 aromasin
6/10 tamoxifen, now Rheum Arthritis
Pet scan NED x3 yrs
daisy22

  • Total Posts : 4
  • Reward points : 65
  • Joined: 8/12/2010
  • Status: offline
Re:IBC - Saturday, August 14, 2010 3:45 PM
Thanks ladies

How do I find you on FB?
Tricia Keegan

  • Total Posts : 19215
  • Reward points : 13520
  • Joined: 1/1/2005
  • Location: Ireland
  • Status: offline
Re:IBC - Saturday, August 14, 2010 3:51 PM
Daisy, if you look for me Tricia Keegan (from Ireland)  I can put you in touch with Ruth and many others from komen.
My avatar is my of my somali kitten Sammy, he's a cream colour and the pic is of him beside some flowers on my garden table so fairly easy to spot I think:)

If you don't find me search for her2 survivors, I check it daily so post there and I'll see it, you may also see me there to add as a friend:)
<message edited by Tricia Keegan on Saturday, August 14, 2010 3:52 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia
mary l

  • Total Posts : 1618
  • Reward points : 4355
  • Joined: 10/26/2010
  • Location: PA
  • Status: offline
Re:What is Inflammatory Breast Cancer? From a survivor - Friday, October 29, 2010 10:48 AM
Good Morning Ruthie 1956.  My name is Mary and I too am a Inflammatory Breast Cancer Survivor.  I was diagnosed in 2003 and was staged IIIB and given an 28% chance.  Well I am still here and it is 8 years this month.  I was HER2+  so when it returned 9 months after all the routine chemos, mastectomy and radiation, I was started on Herceptin along with carboplatin.  In 3 weeks the red raised rash that was spreading across my chest started to fade and 3 months it was gone.  I stayed on the Herceptin every other week for 5 years only stopping it when my heart tests showed that my heart function was slowing down. I had 3 recurrences during the 5 years of Herceptin.  I have been off the Herceptin for 3 years and cancer free 3 years this month. One of the wonderful ladies that sent me a message told me to llook for your name as you had IBC.  A friend of mine suggested that I join this website because I seem to having problems getting back to my precancer self.  I went through so many years of treatment and even 3 years later I feel a little lost and need a kick-start.  My husband understands but my kids{grown} don't. Did you have this problem?  I am so thankful for my survival and I love HERCEPTIN.  My cardiologist says that my heart is perfect and if my cancer comes back I can go back to Herceptin.  I hope you are doing well and that you will send me a message.    Fondly, Maryl
Diag. Oct 2003 with 6mm mass, IDC grade III ductal carcinoma in-situ, Inflammatory Breast Cancer stage IIIB, Her2+++.   I had A/C followed by Taxotere (only had 2tx as I had heart problems from it); Left Mastectomy followed by 35 rads.  Recurence in 9 months as skin mets to mast. site. tx Carboplatin/Herceptin,  stayed on Herceptin every other week for almost 4 years only stopping when my ejection fraction would get too low. off herceptin & ned 3 years in 2010
Change Page: < 12345678 > | Showing page 5 of 8, messages 41 to 50 of 79

Jump to:

Icon Legend and Permission
  • New Messages
  • No New Messages
  • Hot Topic w/ New Messages
  • Hot Topic w/o New Messages
  • Locked w/ New Messages
  • Locked w/o New Messages
  • Read Message
  • Post New Thread
  • Reply to message
  • Post New Poll
  • Submit Vote
  • Post reward post
  • Delete my own posts
  • Delete my own threads
  • Rate post

© 2000-2008 ASPPlayground.NET Forum Version 3.1.5