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Old 07-16-2013, 10:02 AM   #1
NEDenise
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Join Date: Aug 2011
Location: Philly Suburbs
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Re: Brain MRI this morning

Ks-
I prayed for you yesterday from inside my own MRI machine! Now I'm waiting for relusts too. Prayers for both of us, and fingers crossed!
Love
Denise
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1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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Old 07-16-2013, 01:48 PM   #2
KsGal
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Re: Brain MRI this morning

Well. I think I had one of the most bizarre days ever, and I didn't even get the MRI.
Let me preface this by saying, I have had four MRI's of my brain up to this point, and had no problems whatsoever.

Back at the time I got my expanders after my double mastectomy, I also found out I was stage IV. It had taken me about a month to recover from my mastectomy all together...that is the amount of time I took off work and stayed at my moms. I got two fills in my expanders, and then I decided if I was stage IV this was a waste of money and time in surgeries and procedures and things that I didn't want to go through. At that time, I thought I had a limited time here to spend with my kids, etc, so I decided to just keep the expander and forget about finishing everything.

So, on to yesterday, keeping in mind I have had FOUR MRI scans of my brain before. I go in, get my little ear plugs, hop up on the table. The technician pushes me into the tube, and says she will be back halfway through to give me the contrast material. She goes in the other room. I notice my chest feels strange. I reach my hand up there to feel my chest, and my implants are smashed flat to my ribcage in the middle, and look like some crazy deformed doughnuts. Im pressing the panic button....press press press. Im hollering..excuse me! lol

She comes back in, pulls me out of the tube and they pop right back up like nothing ever happened. I wasn't sure how to word it, but I said "When you put me in the machine my implants deflate". So, I pulled up my shirt, she slid me into the tube again...doughnuts. Like where my nipple should be has completely sunk into my chest...pulls me out and it goes back to normal. She gets someone else..they watch my implant/doughnut sequence. We all laugh hysterically because, hey, it is a little weird looking, you know?

So, I spend an hour sitting in the hall waiting while they call my plastic surgeon and the manufacturer of my expanders, and it turns out they are not MRI friendly. If I have an MRI it could burn me internally and a host of other bad things. It was not noted anywhere by my plastic surgeon. Im curious as to why they would use expanders on a cancer patient that were not MRI friendly...as obviously we all get a lot of scans including MRIs.

Right at this time, we get a call from my stepmother's school (she teaches at a college) that she is on the way to the hospital in an ambulance, and they think she may have had a heart attack. Luckily, I am right across the street from the hospital, so we go over to the ER. It wasn't a heart attack, thank goodness, but it took a couple hours to even see the doctor in the ER and get her checked in for observation.

Then I think...okay, back to the scan situation.

I call my radiation oncologists office, because i have an appointment at 1:30 to get the results, and obviously Im not having a scan. The number the operator gives me is to an exam room, not the front desk. I call the clinic operator back...she gives me the number to the front desk for the chemotherapy unit. While I am on the phone with the chemotherapy unit, the radiation oncologist actually calls me, and I can't figure out how to change lines on my phone to answer. I decide..screw all this, Im just going to drive over there, which I do. By the time I get there, he and his head nurse are in a procedure over at the hospital that will take four to five hours. Frustration! I leave a message with the receptionist, and I start across the parking lot. It's pouring rain, and the key won't work the automatic door locks! I just started cracking up, because what are you gonna do, right? It only took a few minutes to get it working again.

My radiation oncologist called me this morning and said a PET scan will not cross the blood brain barrier, and a CT scan isn't precise enough, and there doesn't appear to be any sort of MRI for the brain where the chest won't be "in the tube" so to speak...so I can't have another brain scan until I go in and get my expanders removed and either go completely without or get new implants.

Im pretty bummed, and scared to death. What if there are all kinds of crazy things going on up there in my little noggin, and we don't know it because I can't get a scan!!!!! So right now I am waiting to hear from either the radiation oncologists office (who were calling my plastic surgeon) or my plastic surgeon to see how fast I can get this all done.
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Diagnosed in October 2011 Stage IV with metastasis to liver.
January 2012 after double mastectomy, started taxotere, carboplatin and herceptin.
Clear.
December 2012 was diagnosed with five brain mets, and had whole brain radiation.
Around July 2014 two mets in brain, one a residual spot and one new one growing in size. Received Cyberknife on both areas
Clear/NED
April 2015 remain NED
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