Survival rate for IBC patients

Hi;  From what I know about treatment for IBC is what I had for 1 year (Oct /06 to Oct/07); is still the same 5 years later. I so wish someone could tell me what treatment you've had lately.

Did anyone suffer horrifically with the Taxotere chemo?

And, has very bad side effects from the AI???

I so need to know this..............please help!!!!

trudy

Trudy,

 My DX was in Nov last year.  A summery of my treatment is in my signature line.  I don't know anything about your treatment so I don't know if it was similar or different from yours.  I did have 6 doses of Taxotere (along with other chemo).  It was not fun, but certainly tolerable.  I have been in remission (NED) since April, so only 5 months from diagnosis to remission.   I've been on Anastrozole for just over a month now.  So far not much in the way of side effects.

Trudy,

 I'm not sure what you are looking for.  You asked people to tell you what treatment they have had lately which is what I did. I don't have any questions about IBC, I was trying to answer the questions you asked.

Hello. Well, I have had chemotherapy prior to a left breast mastectomy, chemo worked very well! 10 lymph nodes removed and biopsied, all negative, tumor was 12 cm, at surgery, 2 cm, all dead. That is all I know, I really don't pay attention to details though I am a mental health professional for 25+ years. Worries are far less when I don't think about that stuff I don't know alot about and I leave those things to my talented health care team. I focus on enjoying life, the beautifual walk I had this eve, the awesome dinner I had this eve and the one I am having tommorrow, the wonderful friends I have, the colleagues that come over on their lunch break, I have learnt to make my cancer a small part of my life.  Whether I am right or wrong for not keeping track of my wbc, neutrophils, margins, lymphatic or vescular, no matter, I am just living my life. I find that though knowledge of my cancer maybe important, I choose to just live and enjoy life regardless. Yes, I perhaps am totally insane and certifiable, all of this talk of numbers, tests etc, really is not letting me enjoy life, on that note, I have a new pair of binoculars and a beautiful new hat, I am going outside to look at the last part of a full moon, there were two this month fyi.

Michelle, yes. You first have chemo to control the IBC, then surgery, sometimes chemo again, then radiation.  It is vitally important that you do NOT have surgery first - that is one of the primary reasons our stats are so bad - stats are based on long-ago treatments (decade or more) and they have only realized how dangerous a mastectomy can be to untreated IBC in recent years.  So it does sound like your team is on the ball.

Marianne and the board: I am 60 yrs old and now six years out from my orig dx in 6/2006. I was stage 3b. I had chemo, surgery and radiation. One of the dr's I went to for diagnosis wanted to do surgery first, but then talked with another dr and both decided that with IBC, chemo was the first step, to make sure cancer cells weren't spreading.

My Dr's were very pleased that I got the best results you can get from all my treatments, surgery and radiation. I try not to over worry about cancer coming back, maybe I have been using some denial, but it's important to live fully. I was at Moffitt Cancer Center in Tampa and my surgeon there thought I had an excellent chance of beating the cancer, especailly the way I was responding to all the treatments. I do hope we get more tests for cancer detection, more conclusive without adding more radiation or other more invasive testing. Plus, my Ins. co won't agree to a CT scan unless I have symptoms. I am NED. 

Femara users, I have taken it for over 5 yrs now and I think my symptons are fairly mild, but there. I get more menopausal symptoms and I think if gives me more aches and pains in my muscles, joints, etc.   Gratefull it is still a treatment that my Dr. feels is best for me.  I wanted to say I got some unexpected help with my menopause symptoms from taking Gabapentin (analgesic pain pill) for my back problems. Somehow its reduced my hot flashes, a lot. Maybe they need to research WHY this would help menopause, could help other sufferers.   Best to you Marianne and all of us having to deal with IBC or any cancer.

Deb, I go to Moffitt also.

Hi,

I'm new to this site but wanted to share my story. Dx on 3/2005 IBC Stage 4 (mets in liver) ER/PR- Her2+. Chemo of carboplatin, taxotere, Herceptin weekly for 6 months, bilateral mastectomy, 33 round radiation. Liver mets back in 2008 did STBR and until 10/2015 NED. Oh, I've been on Herceptin for 10 years. Now I'm on TDMI and palbociclib (clinical trial oral chemo). Have had 3 rounds have echo and ct's on Friday and see onc. on next Tuesday to see if this is working.

Just remember there is always hope and don't believe everything you read as far as statistics. We are all living longer with the right doc and treatment and we need to do our due diligence to make sure we have the best there is for IBC because it's rare.

I have been blessed and am grateful each & every day. This has been an incredible journey in so many positive ways, here's hoping you all have the chance to experience your own.

hi Bonnie ,

Sorry for my long silence. Thank you for caring .

Unfortunately , I experienced the expected side effects on Kadcyla with low platelets and increasing liver enzymes . Dose was lowered then eventually stopped. Currently , I am on Xeloda . About to begin my third cycle. Today , I resumed infusions of Herceptin and Perjeta.

My right Breast inflammation has improved . However , my left Breast is sore ant the skin mets persist .

Posting to find out if anyone has a similar experience , ie skin mets with IBC

Thank you very much Bonnie .

Hope you are doing ok

Lynne