HER2 Support Group Forums - View Single Post - Need hopeful stories of survivors of Inflammatory Breast Cancer?

jacqueline1102 · 08-01-2012, 10:22 AM

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!

08-01-2012, 10:22 AM	#27
jacqueline1102 Senior Member Join Date: Apr 2012 Posts: 183	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! __________________ 10/11 IBC Stage IV; 1 liver met 4.6 cm. 10/11-2/12 TCH for 6 rounds 3/12 Right MRM 5/12-7/12 33 Radiation treatments 8/1/12 Started Perjeta along with the Herceptin 10/12 Scans said NED for first time 5/15 UWSeattle Vaccine Trial 3 months 12/16 Scans still show NED. Herceptin and Perjeta continue indef. 8/17 Taken off Perjeta;staying on Herceptin. Still NEAD. 3/18 Still NEAD 8/19 Now on Subcutaneous Herceptin 10/21 Remain on Subcutaneous Herceptin (Hylecta) 11/21 CT showed possible lung mets. Was told to wait and see until scan 1/22 CT shows continued growth 03/22 Lung Biopsy said sample was too small but nodules keep growing and IR is convinced that it is indeed cancer 04/22 Oncologist referred for consult for a transbronchial biopsy. This does not sound pleasant