MIBC roll call October 2016

positivenegative

In honor of everyone's *favorite* pink month...thought a big metastatic inflammatory breast cancer roll call is in order!

mandymoo

happy to be the first one.

initially Diagnosed with stage 3b IBC December 2005.

Diagnosed with metastatic IBC May 2012 with mets to hip and skull. Mets spread in November 2012 to spine, ribs, lungs, liver and brain. NED in allorgans about a year later.

August 2016 mets have spread to spine, ribs, sacrum, hips, shoulders, skull and lungs.

I will be celebrating my 10 year IBCancerversary on 15 December this year and then 5 years with mets in May next year.

hugs

Mandy

positivenegative

welcome aboard mandymoo! 10 years congratulations that is encouraging... Thanks for sharing some of your story. I don't see alot of IBC'ers with *long term* successes. Glad you are here.

mandymoo

Thank you positivenegative.

I dont post much as I am away a lot with family responsibilities. I know that IBC is very aggressive and that our prognosis is quite poor, but, there is hope, and I remember when I was first diagnosed, I felt so bewildered and scared. I hope this gives others a more positive outlook and have some hope. There are others that are still going strong even 15 or 20 years after IBC diagnosis, and Iaim to be one of them, haha. I will check in again in December to celebrate my 10 years as I never, never believed that I would still be here when I was first diagnosed.

Warm hugs

Mandy xxxxx

mara51506

Hi there. Dx IBC May 2015. ERPR-, HER2+. Went through chemo from June 2015 to end of Sept 2015. Herceptin from September 2015 to August 2016.

From May 2016 started feeling nauseated and dizzy and the morning. Feel like sometimes get vertigo as well, led to couple of ER visits and on July 29/2016, dx with single brain met. Is biopsied and same makeup as breast cancer. MO and RO agree was probably there from the start.

Craniotomy done Aug 2016, Whole brain radiation done Sept 2016. Recovering from that. Bone scan and CT scan in August showed NED from neck down. Repeat of Bone and CT scan done this week so will find out Nov 1st if still NED and also to decide what sort of treatment would be needed going forward.

Radiation was definitely harder than the surgery. Still very tired between surgery and radiation. I do exercise most days, appetite is back to almost normal. Did not enjoy the barium drink today. Always upsets my GI for a while.

I am hopeful with the IBC myself because although I know it is aggressive, it is because it is aggressive and fast growing that it responds well to chemo usually. I credit that with being NED below the head. The brain stuff scares me, but will take that one day at a time and hope for the best. Fingers crossed I am still NED from the neck down and I will go from there. Nice to have others to talk to as well.

jcpriest0469n

Thanks Mara for sharing your experience with brain mets. I need to bit the bullet and get a brain MRI.

mara51506

If you are having anything out of the ordinary, it is worth checking out. My symptoms were not clear cut. As earlier posted, showed up as morning nausea, fatigue and what I thought was vertigo. The vertigo was actually my brain swelling from the tumour, so it was the pressure that would build up. When that happened, the "vertigo" was actually a seizure. Not one that made me convulse, but made me really dizzy, giving just enough time to lay on the ground so as not to fall.

If you have anything similar, you should ask for the brain to be checked out. MRI would be best since it can pick up even very small things. Good luck.