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-   -   IBC ( inflammatory breast cancer) (https://her2support.org/vbulletin/showthread.php?t=67337)

Nurse4u2day 08-22-2018 08:58 AM

IBC ( inflammatory breast cancer)
I was just going through some post and realized thereís not to much here about IBC . So just wanted to give those who have had the diagnosis and there heads are spinning as was mine when I received the devastating diagnosis. This November I will be coming up on 5 years since dx and I remain NED. As I have always said Iím not a statistic but instead an individual. Despite a lost of a friend of mine with the same diagnosis IBC, stage 3c, her2+++ only ,same treatment regimen as myself , no known hx of cancer and no genetic markers found. . Why have I made it to almost 5 years and she only survived 22 months ? No answers other then to say we are each individuals and there is always hope! You donít have to have faith in the lord above ( I personally do however ) but you must always have hope . Because without faith or even just hope all that is left is sadness and depression, not a world that I ever want to live my life in whether it be years or just months or even days. Cancer steals way to much from us. I refuse to let it steal my hope!

donocco 11-07-2018 02:06 PM

Re: IBC ( inflammatory breast cancer)
There is an enzyme very involved with IBC called Anaplastic Lymphoma Kinase. About 90%
of inflammatory breast cancers are partially driven by the abnormal functioning of this enzyme. There is actually a drug to combat the enzyme called Xalkori (generic name Crizotinib). The FDA indication for Crizotinib is (I believe) non small cell lung carcinoma. It might have some value in IBC but the insurance companies wouldnt pay for it. Im curious what Xalkori could do for IBC in combination with other drugs.

Nurse4u2day 11-18-2018 12:46 PM

Re: IBC ( inflammatory breast cancer)
This is very new and interesting information. I see my oncologist this January . Will have to ask her about this .
Thank you

StephN 11-21-2018 09:47 PM

Re: IBC ( inflammatory breast cancer)
Five big years - and five more coming right up.

Thanks for the HOPE offered for others.

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