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Inflammatory Breast Cancer a new forum

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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2017 at 8:13pm
Dear avjoglek,

I read your post and greatly appreciate the time you took to write.

I have a great deal of experience with helping women with IBC/TNBC and I would like to try to help you/your Mom. I am not a medical professional and will not give you/her medical advice but perhaps I can be a resource for you in some way. I am sending you a PM with my contact information and hope to hear from you.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Catherine1211 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Catherine1211 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2021 at 10:28pm
hello,  my sister (age 41) has recently been diagnosed with triple negative inflammatory breast cancer. After a multitude of tests we have been told it has spread to the other side, her lymph nodes & her sternum. She's been sent for a PET scan & futher biopsies. A futher two weeks has now passed,  & after waiting petrified again,  the results wasn't ready. At this appointment her doctor told us her chemotherapy needed to start immediately because of how much it had  grown in a short space of time.  A futher 2 weeks have passed & finally today She's started her chemotherapy. She has received 2 different types of this today & is very ill. I am glad I've found this site & hopefully find a positive post to show her.
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 26 2021 at 10:53pm
Dear Catherine,

It's the middle of the night for you but if you send me a Private Message I will send you my phone number or if you write to me at info@sagepatientadvocates.org and provide your email I can set up a Zoom now. I will send you my phone number in a PM to you now.

Inflammatory Breast Cancer (IBC) is a very difficult cancer to treat. But there are success stories if the chemo works. If there is a complete response to the treatment then from my experience surgery is the next step.

For some unknown reason 70% of women who have IBC have TNBC. The converse is not true. 

I am very close friends with one of the world's leading IBC experts. If we can talk I am hopeful to get input from him and maybe he knows your sister's oncologist? Is your sister being treated in Liverpool?

I will try to help in anyway including talking to you now or tomorrow morning after 8:30 a.m. San Diego time (I believe we are 8 hours behind you so it is 7:48 p.m. now for me and 3:48 a.m. for you and tomorrow at 8:30 a.m. my time it will be 16:30 pm your time.

I am not a medical professional and I will not give you/your sister medical advice but I am hoping I can be of use to you/your sister.

There will be no charges to you/your sister from either SAGE Patient Advocates (a U.S. non-profit foundation) or myself.

warmly,

Steve




I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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