Need some help from vetern IBCers

LuAnnH

Need some help from vetern IBCers

LuAnnH

I am very familiar with bc and mets but not so much with IBC.  A very nice person I have made friends with in the chemo room has been battling IBC for about a year now.  Last I knew she was stage III and triple negative.  They had shrunk her cancer enough to do a masectomy this summer, but in the few weeks of prep time for her masectomy the cancer grew back rapidly.  She initially was on taxol, then carboplatin/avastin and switched back to taxol I think.  Anyway, she had a double masectomy in November and seemed to be doing well.  She turned up in the chemo room and the cancer is back on the side it was originally on and her skin on her chest is awful.  A large patch of cancer has regrown over the scar and around it.

With IBC, is this still a recurrance or possibly Stage IV?  Is this normal for IBC to regrow so quickly?  I just don't know enough about this beast and she comes to me with alot of questions.  I would like to be able to be as educated as I can for her.

Answers or directions to the best place to find them would be greatly appreciated.  Thanks alot in advance!

lexi4

Gosh LuAnn, I wish that I could be of more help. My IBC was in the form of a pimple that did spread to a rash the size of a nickel or so. It disappeared after my txs of taxol and herceptin. I have heard of the IBC reappearing as it can be agressive. Had she had any other scans to see if it has gone beyond her skin and lymphs?  

There are a few good sites for IBC info. IBC Research may be a good source for you to get some answers. I am sure that there will be some positive stories. Please let your friend know that she isn't alone in this. There are many of us gals here for her if she needs to vent or share.

Hugs and Prayers,

Lexi

LuAnnH

My friend has had scans and as far as I know it has not spread anywhere else in her body.  She showed me the skin and this patch of skin that was affected was very large.  I am just very worried about her as she is just such a sweet lady.

TenderIsOurMight

LuAnn,



I sent you a pm



T.

Anonymous

Luann, this sounds like your friend has developed skin mets.  Yes, IBC can grow and spread this rapidly.  IBC is the most agressive form of breast cancer.  Its survival statistics are grim.  I hope they can find a chemo that will have good results for your friend.

lexi4

LuAnn,

I am hopeful since it hasn't spread further that the affected skin can be treated and get the mets under control. She probably already had rads. Please do ket her know that we are thinking of her.

Lexi

LuAnnH

thanks lexi, I appreciate your responses

Squeaker

LuAnn - Another IBC vet here ... everyone is right on their comments, unfortunately. 'Tis the nature of this particular beastly beast. I think if you go to bcmets.com and look under pictures, you will see what the skin mets look like. She has a battle ahead of her, but their are many who walk beside and behind her on this path. We're here to lean on. Please express our support.

LuAnnH

thank you, unfortunately you all are confirming my fear for her.  As a fellow metser I will help her all I can but this is so darn heartbreaking!!!

Lauralynne

LuAnn,

Your friend's history with IBC sounds similar to my own.  I had chemo first, then radiation, then double mastectomy in September 2006.  By December 2006 I had a recurrence on the cancerous side with purple spot in mastectomy scar.  Then the cancer turned to skin mets all across my chest.  I had radiation to clear up the skin mets.  Have been on chemo pretty much constantly since my diagnosis in February 2006.   I have numerous lymph nodes involved, and my doctor calls me a stage IV.  I am on a new chemo called Ixempra that was just approved by the FDA for breast cancer in October 2007, 3 weeks on, 1 week of rest.  Side effects not bad.  I will have scans in March to see how it is working.   I am coming up on 2 years fighting with IBC.  It is very aggressive and the doctors cannot predict what it will do next.   A great web site is www.ibcsupport.org.  

Good Luck to your friend.  It is not easy but if I can do it, she can do it.  How nice you are to want to help her.  You are a gem.

Lauralynne 

LuAnnH

Lauralynne,

Thank you for sharing, your situation sounds very similar to hers.  I don't think I have ever seen you on the mets section.  Why don't you pop in there and join in with us sometime.  We love new friends!!!  Thanks for the website, I am going to check it out.

LuAnnH

Lauralynne,

Thank you for sharing, your situation sounds very similar to hers.  I don't think I have ever seen you on the mets section.  Why don't you pop in there and join in with us sometime.  We love new friends!!!  Thanks for the website, I am going to check it out.