Survival rate for IBC patients

Nel138281

Marianne,

I am from the Boston area as well.  I have been treated at Faulkner/Dana Farber.  As others have said , this is doable, bu tmake sure you have docs who deal with thsi DX on a regular basis.  I was dx at a hospital in the burbs and it was clear the oncologist was more nervous than I was.  He raised my anxiety beyond what you can imagine.  I got into Faulkner and the onc was this is a long road but doable.  I have loved him from that moment on.  He has women in his practice that are 10, 20 and 25 years out. 

There will be chemo, surgery, chemo and then rads.   I was dx last September and have finished all but herceptin , I am Her2 +.  I was very fortunate and managed to work thru it all and am feeling better every day.  I remain very hopeful as does my onc.

Stay in touch.

Gentle weekend

Nel

Not  a path we asked to travel, but here we are. 

Marianne52

Hi,

I am Triple negative which isn't too good from what I hear. I am in a Clinical Trial @ MGH. I have Chemo on Monday's, Cisplatin and Taxol. Haven't had the Taxol for the last two weeks as my Liver Enzymes were up. If they are still up this Monday, I will be out of the Trial. I start week six on the 12th. Thanks for writing. Marianne

nancyjac

If you can read this, your survival rate is 100%.  

Marianne52

Hugs to you Nancyjac. You came to my rescue again. I believe you now!

SAR843

I'm so happy I read this thread today. I just finished 5 months (10 rounds) of very aggressive chemo. I still have a little over three weeks until my surgery and my anxiety is rising. My doctor had me start tamoxifen (I'm ER+) on Monday, and will stop it a few days before the surgery, and I guess the reality of having to take pills, for possibly the rest of my life, has set in. I thought I would be happy to be done with chemo, and I am, but while I was getting chemo I was doing something. Now it's just another waiting game until the surgery. I guess I just have more time to think about what having cancer means and it's stressing me out. I made the mistake of looking online at the stats and haven't been able to get them out of my head, but after reading all of your posts I feel much better. 

trudy-erl

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

Marianne52

Hi,

I was Dx in July 12. I am in a Clinical Trial. I take a pill every day. I am also having Cisplatin and Taxol every week for 12 weeks. Surgery to follow in late Oct. Then 6 weeks of Rads and 12 more weeks of Adriamycin (don't think I spelled it right.)

I am having a lot of heartburn and bone pain with the Taxol. Not to mention I am always extremely tired. I missed two weeks of Taxol because my Liver enzymes were elevated so those two weeks will be added to the initial 12weeks of Chemo. Marianne

nancyjac

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-erl

Hi Nancyjac:

Thank you so much for your response.

My question really should have been:

Has anyone been on AI (Letrozole) for a long period of time? How are you dealing with the side effects. PLEASE, be so kind and message me as I'm very rarely on this discussion board.

Any questions you have about IBC and would like an opinion.....please message me.

Have a great day.

trudy

nancyjac

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.

Pam-Al

hi,

I am 51 and 13 yrs out, so hang in there

SophieG

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.

pammenter

I have a question you might know the answer to. With IBC do they recommend surgery first then radiation? My surgeon chose the other way so I was a little worried.

Thx

Michelle

Sherlocked

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.

nancyjac

Every one's treatment plan is individual to them.  There is no standard sequence of chemo, radiation, and therapy with IBC or any other cancer for that matter.  I had chemo followed by surgery followed by radiation.

Sherlocked, I'm interested in the source of your info about not having surgery first and your resulting conclusions.  How does the sequence of treatment affect stats and what do those stats have to do with individual patients?  Why do you believe having a mastectomy first is dangerous? 

debnova

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.

Kicks

I have been on Femara/letrozole since early 2/2010 (Femara til it was available generic) - no SE's I know of.



Different Drs have different ideas on TX. For me, I did 4. DD A/C first then surgery/mast. which was followed by 12 Taxol. Then rads and starting Femara. Most IBCers I see posting did 2 different chemo before surgery - but considering I'm 2 1/2+ yrs post last TX and as far as I know still 'riding NED' - my TX was on the right' TX for me'.

netty46

Deb, I go to Moffitt also.

Lynneser

it's good to see that many are doing ok.

I was diagnosed 6 months ago IBC Stage 4 Er - Pr - Her2 + right breast

I was treated with Herceptin , Perjeta, Taxotere x4 cycle

I was supposed to get 6 cycles . However , my skin lesions extended to the upper abdomen and the left breast.

Now, I got my first dose of Kadcyla .

My double was postponed until there in improvement on the skin lesion

Is there anyone who can comment/ experienced something like this. Thank you so much

Lynneser

wlynn

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.

Teakie88

wlynn: Thank you so much for sharing your story with all of us IBCers. I'm so happy for you that you have done so well, and it is my hope that all of us with IBC can follow in your footsteps. Ann

Lynneser

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