Friend diagnosed with Stage IV IBC

lescox

Friend diagnosed with Stage IV IBC

lescox

I have a friend that was diagnosed last week with IBC, stage IV, metastasized to her hip and probably the tail bone and lung.  Her onc started her on chemo the same day as diagnosis, and radiation to start within 1 week.  I really want her to get a second opinion.  When I asked the ocn how many patients he has treated with IBC, he glossed over it and did not answer me.  I asked him about clinical trials and was told she needed to go thru chemo and radiation first.  The chemo she is on is the Taxotere.  Please tell me the best place or doctor to go to for a second opinion and/or treatment.

Thanks,

Leslie

Anonymous

MD Anderson in Houston, TX

lescox

Hi,

I have called MD Anderson and they said they would have someone call us back within 2 days, but that they require you not to be on any treatments (chemo or radiation)?  

Anonymous

Hmmm...that sounds strange.  Did they give you a reason?  I can't imagine what diff it would make if you are only going for a consult.  I can see that if you plan to seek treatment there.

lexi4

Hi Leslie,

I too believe MD anderson is the premier hospital for IBC research. I have read that they are no longer taking on second opinions once tx has been started elsewhere.

Please let your friend know that we are thinking of her.

Hugs and Prayers,

Lexi

Anonymous

Thanks Lexi.  I didn't know that.  They must be getting overwhelmed with people wanting consults.

lescox

Thank you Lexi and Always Hope,

Can you suggest another hospital that specializes in IBC?  We live in South Carolina, but it does not matter where it is.  Our boss has agreed to pay for me to go with her to the best place we can find.

I just don't feel comfortable with the answers her onc has given her.  He says "no" to any surgery, he did not even tell her it was stage IV until I asked.  She then asked him if this was "life threatening".  She is taking "Toxatore" once a week for 3 weeks and then off one week and she is doing radiation everyday Monday thru Friday.  Is that normal for this diagnosis?

Thank you so much for your responses.

Leslie

Squeaker

Hi Leslie - Always Hope & Lexi are great resources when it comes to IBC. I'm also an IBCer (who finally has figured out password issues in the new format here at bc.org. ... it's only taken months!!) Anyway, I'd like to add my two cents:  Call up to Duke or any large

"Breast Center" you've got up in the Research Triangle. I'm sure they'd be willing to talk about a 2nd opinion w/your friends onc. Make sure they know you need to talk w/someone who's actively seeing IBC pts. I'd also visit www.ibcsupport.org if you've not done so already. There are addtn'l resources there and other IBCers on their list that could help as well. Good luck, your friend is lucky to have you assist her!  Take care. 

Anonymous

Squeaker

It is good to have you back!!! 

kimmie39

Hi guys,

Here my two cents. I also have IBC (and triple negative) I tried to go to MD Anderson and got no where. They are over whelmed with request and dont want any second opinions( guess theres not enough money in it). I would suggest she goes to the nearest comprehensive cancer center. You can look on american cancer society or national cancer institutes web site to find one.Squeakers link to IBCsupport website is great advise.

Anonymous

Kimmie

I'm a triple neg IBC'er too.  Next month will be my 4 year anniversary from diagnosis.  There is hope.

Squeaker

Always Hope ... Thanks!!  It's good to know I'm no longer a dunce and finally figured out the prob to be a strange new password I was assigned at the format change. Go figure!!  Hey, congrats on the 4 yrs next month ... I'm a year behind you almost. 

Anonymous

That's great, Squeaker!

kimmie39

Hi guys,

Alwayshope - Nice to here from you, 4yrs WOW. Nice to hear something positive about a  Triple Neg IBC'r!!

Squeaker - Congrats on 3yrs ! I hope to be there one day. 

lexi4

Yes, thanks for sharing ladies! I am 2 years out, her2+, so I love hearing some positive stats re IBC. I am so very thankful for you!

Lexi

Caseysmom

Leslie:

Here is my two cents you may want to check out the Barbara Ann Karmanso Cancer Institute in Detroit Michigan.  They are very big on research.

website: www.karmanos.org

Congrats to both Alwayshope and Squeaker.  I am currently 2 years out.

Big Hugs from Michigan

Laura