Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

diagnosed with IBC in 2009
Finished adrimycin, cytoxin
Finished taxol and herceptin
Last Herceptin on January 14th. 2012
Looking to get into some her2nu positive trials.
Things are going great!Candy

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

Look up ElaineM - she is 13 yrs out from dx

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

4 years out. Still on Herception and I guess its working.

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

I have been off of herceptin for quite awhile and am approching the 3 year mark from Inflammatory Breast Cancer. I think if they can treat it, which it sounds like they can, then you are going to beat this. Continue to hold on in faith, and don't ever give up. May God bless you. Candy

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

I don't know what "survivor" means but MJ is approaching the 2-year mark with her IBC. She's been Stage 4 from the start and has had one recurrence but seems to be NED now. She will have PET/CT scans and MRI in September. We just got back from a nice vacation in Myrtle Beach and she continues to be busy with her work and going about her usual life.

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

Hi,
I just passed my two-year mark on 22 July, Stage 4 from the get go. Live in The Land of Yes!

Karen

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

Hi Greg,

I would encourage you to contact the Inflammatory Breast Cancer Research Foundation with this question. Ginny Mason, RN, BSN is the founder of this organization and an excellent resource. I subscribe to the newsletter which comes out monthly. Carol McWilliams is the editor of the newsletter and her email is carol_ibcrf@gmail.com. Lots of research going on and the Indiana University School of Medicine is stepping up. Lucky for me I live in Indianapolis. I may be off base in my assessment; I don't think there are many Inflammatory breast cancer women on this website just because for one IBC is rare. I have noticed, having observed from afar on an IBC discussion board, that there may be some IBC women who feel so alienated from other breast cancer patients that they may stay away from this site. Which is so sad for them, really, as I believe this website has been far more useful and the people far more helpful than the IBC website. Recent activity on the IBC discussion board facilitated my decision to withdraw from that site. To answer your question, my oncologist had me speak to someone he treated. She has/had IBC which had spread to her liver and brain. She is now 8 years out and is on maintenance drugs. She is ER/PR + so she takes the hormonals which gives her more treatment options. I think that was a huge thing in her favor. I have spoken with this patient twice and she is amazing. She worked fulltime during the whole ordeal with the exception of treatment for her brain. She just retired this spring from her job and is now taking care of her elderly mother. When diagnosed she was 57 years old. Her only complaint has been a 25 pound weight gain. Her philosophy was keep working, keeping attending church, and enjoy your family. Her quality of life has been great. Hope this helps. I think your wife's attitude of embracing her life is critical to her quality of life. My treatment team recently said to me that a predictor of longevity seems to be complex although they all agreed that having good health to begin with (other than that cancer thing) and the response to treatment are significant factors. Take care and glad you enjoyed your vacation!

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

Jacqueline, What treatment did this lady have for the brain mets . I have never come accross anyone else who lived so long having had brain mets. Its so encouraging. Thank you for posting.

Re: Need hopeful stories of survivors of Inflammatory Breast Cancer?
 

Hi Delaney,

I am not sure what procedure she actually had. I will have to call her. I know that there was just one spot and she was unable to work for a short time. What was also amazing about this is that her oncologist (the same one I have) psuhed to have his colleague from another hospital do the surgery because the one where she was treated did not have anyone on staff who could do the surgery. Her oncologist really went to bat for her. So, what was cool another surgeon at another hospital (not affiliated with the hospital that my oncologist worked for) did the surgery and was somehow able to get the insurance to pay.
You may want to look at other's profiles on her because I think Steph is someone who had brain mets and has quite the remarkable story.

Take care,

Jackie