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Search: Posts Made By: agness
Forum: her2group 08-16-2017, 10:49 AM
Replies: 9
Views: 4,636
Posted By agness
Re: Update, good news, bad news

Hi Tracy,

How insane is that? I'm so glad your recent scan show stability.

I'm still dealing with Regence (Blue Cross) wanting to deny payment on Avastin from October 2016-January 2017. I had...
Forum: her2group 05-11-2017, 10:50 AM
Replies: 48
Views: 40,232
Posted By agness
Smile Re: My leptomeningeal journey

The past few months have been really up and down for me. My MO counted out since my LM was originally diagnosed and said, "maybe I'll start doing this for other patients too". That is sobering to...
Forum: her2group 01-01-2017, 05:16 PM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

I continued with treatment, all of it, and also took my friend's suggestion to heart -- I had to use food as I did medicine, I needed to push it into me to be strong and to fight. I was determined to...
Forum: her2group 01-01-2017, 04:55 PM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

That was a really long week. I started using a cane for additional stability because my body asked for it. I was frightened. What if this was my new normal? What if treatment didn't work?

I...
Forum: her2group 01-01-2017, 04:39 PM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

Posting a long overdue update on me...

In July I started feeling facial numbness on the right side. My neuro-onc wasn't sure what it was and so we decided to rescan in a month. She thought it...
Forum: her2group 08-18-2016, 02:55 PM
Replies: 11
Views: 6,075
Posted By agness
Re: 10 years and in trouble

I'm very sorry for your progression news Mishka. In the absence of digging very deep know that excess copper in your system is stored in the brain and liver -- and copper/zinc dysregulation is at...
Forum: her2group 07-20-2016, 09:51 AM
Replies: 27
Views: 16,687
Posted By agness
Forum: her2group 07-20-2016, 09:21 AM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

You are most welcome.
Forum: her2group 07-19-2016, 11:42 AM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

Tomorrow, 7/20, is the year anniversary of the discovery of my cerebellar tumor. Here's to making it one full year.

PET/CT from eyes to knees a couple weeks ago was clear again.

Shifted to IT...
Forum: her2group 07-08-2016, 10:15 AM
Replies: 10
Views: 4,417
Posted By agness
Re: vitamin D anyone?

I take vitamin D3 a couple different ways. Once with a calcium-magnesium supplement, the other by itself, but along with a K2 supplement.

It was on a fibroid discussion forum that I learned a...
Forum: her2group 06-24-2016, 11:05 AM
Replies: 7
Views: 5,538
Posted By agness
Re: night sweats

Hi,

It too am HER2+/HR- and not on anti-hormonals. I had night sweats before cancer and since. I got my period back after chemo.

My Chinese Medicine diagnosis of the night sweats says that it...
Forum: her2group 06-15-2016, 05:30 PM
Replies: 48
Views: 40,232
Posted By agness
Re: My leptomeningeal journey

Hi,

Sorry I haven't posted an update in a while. After my first post brain rads scan and spinal fluid test came back clear of progression with no signs of disease, greatly reduced areas of...
Forum: her2group 06-15-2016, 04:45 PM
Replies: 2
Views: 3,422
Posted By agness
Re: Can Cold Cap Prevent Treatment From Working?

My RO assured me that external application of cold caps would not affect the internal temp of my brain. As you might recall the brain is highly vascularized and all that hot blood isn't going to be...
Forum: her2group 05-25-2016, 11:54 AM
Replies: 3
Views: 7,331
Posted By agness
Re: Get the best breast cancer guide that is out there - FREE

Bump. Get this if you haven't yet. It's full of useful information that goes beyond standard of care and is equally useful for the newly diagnosed as for those with mets.
Forum: her2group 05-13-2016, 02:42 AM
Replies: 28
Views: 10,707
Posted By agness
Re: dearjilly has passed away

Painful to read of her passing. Yes, we need better options to kill metastatic BC
Forum: her2group 05-11-2016, 09:30 AM
Replies: 21
Views: 8,422
Posted By agness
Re: Law suit due to Taxotere permanent hair loss/balding

y eyelashes are thinner and shorter since doing TCHP two years ago. My eyebrows are also diminished, they are still there but fall out sooner in batches at times and the hairs don't grow as long any...
Forum: her2group 05-11-2016, 09:20 AM
Replies: 235
Views: 209,056
Posted By agness
Re: Intrathecal (IT) Herceptin (Trastuzumab) for brain mets (Leptomeningeal Metastase

Hi,

Just saw your question. I'm glad to hear 200 mg was well-tolerated. The only other high dosage I heard of was in the IT Herceptin trial that is ongoing. The dosage I heard of was 80 mg twice...
Forum: her2group 05-01-2016, 10:19 PM
Replies: 1
Views: 4,401
Posted By agness
Re: Single Dose of herceptin KickStarts Immune system-response predicts which bcs H h

I wonder what they would see if they looked at the following agents singly, and maybe in dual agents as well:

Kadcyla (TDM-1)
Perjeta
Tykerb
Forum: her2group 05-01-2016, 10:11 PM
Replies: 3
Views: 4,261
Posted By agness
Re: for those considering/undergoing neoadjuvant treatments, longterm statistics !!!!

I had only 3 nodes removed after neoadjuvant TCHP two years ago. All my scans in the past year have remained clean -- just that HER2+ idiosynchratic tendency to go to the brain as the first site of...
Forum: her2group 05-01-2016, 10:06 PM
Replies: 17
Views: 5,691
Posted By agness
Re: Today marks 9 years living with cancer; stage 4

Congrats on 9 years and thanks for your continued support.
Forum: her2group 05-01-2016, 10:00 PM
Replies: 22
Views: 7,537
Posted By agness
Re: Five Years Stage IV

Congrats! Great advice too. Here's to many more.
Forum: her2group 04-27-2016, 08:27 PM
Replies: 3
Views: 4,436
Posted By agness
Forum: her2group 04-17-2016, 12:29 PM
Replies: 11
Views: 27,586
Posted By agness
Re: Hair color

I used cold caps but by the time three months post chemo rolled around I was desperate to color. I used Natracare to cover my gray and it worked well. They sell it at natural gricery stores.
Forum: her2group 04-11-2016, 07:03 PM
Replies: 7
Views: 4,870
Posted By agness
Re: IT Herceptin In Europe

Intrathecal Trastuzumab Halts Progression of CNS Metastases in Breast Cancer
http://m.jco.ascopubs.org/content/early/2014/12/29/JCO.2012.44.8894.full

See the author info
Forum: her2group 03-31-2016, 01:19 PM
Replies: 58
Views: 34,794
Posted By agness
Re: Compiling Data on HER2 Brain Mets

"Molecular factors implicated in CNS metastases and LM include E-cadherin–catenin complexes, plasmin, urokinase-type plasminogen activator, metalloproteinases, tissue inhibitors of metalloproteinases...
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