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Search: Posts Made By: agness
Forum: her2group 05-11-2017, 10:50 AM
Replies: 48
Views: 36,677
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: 36,677
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: 36,677
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: 36,677
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 07-20-2016, 09:21 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

You are most welcome.
Forum: her2group 07-19-2016, 11:42 AM
Replies: 48
Views: 36,677
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 06-15-2016, 05:30 PM
Replies: 48
Views: 36,677
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 03-19-2016, 06:57 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

I had my first scans this past week since my 12/28/15 scan showed progression and my oncologist said "nothing is working" and I was recommended to have whole brain radiation.

I had a PET/CT and...
Forum: her2group 02-27-2016, 07:23 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

I had my first cerebrospinal fluid labs run this week, the first since early December.

The spinal fluid was clear, colorless and showed no debris. There were no red or white blood cells so no...
Forum: her2group 02-12-2016, 11:54 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 15 ---

My first brain scan after starting IT Herceptin was a month later. While my symptoms of facial nerve pain resolved within a week of starting treatment the scan showed disease...
Forum: her2group 01-25-2016, 12:28 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 14 --

On Friday December 4, 2015 I had my first dose of IV Kadcyla and once that finished up in pre-op they wheeled me into neurosurgery to have a pediatric Ommaya Reservoir placed in my...
Forum: her2group 01-19-2016, 03:49 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 13 ---

(you have probably been waiting for me to continue, well here goes )

I had symptoms of occipital and trigeminal neuralgia from my original cerebellar tumor that were...
Forum: her2group 01-05-2016, 10:52 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 12 ---

After my brain surgery from everything I could gather from my team and my research I learned that there was a high risk of my brain mets coming back and that there was a dearth...
Forum: her2group 12-29-2015, 06:32 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 11 ---

After I had my brain tumor removed it was a weird time. My kids were off for the week with their dad, my parents were caring for me, I was walking slowly, I had increased ear...
Forum: her2group 12-28-2015, 04:30 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 10 ---

In April 2015, 8 months after finishing neoadjuvant TCHP, about three months after finishing systemic adjuvant Herceptin treatment, I stood up which gardening and felt dizzy. I...
Forum: her2group 12-23-2015, 10:09 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 9 ---

I got my Herceptin ongoing just like every HER2 gal. Was tolerating it okay though it did slow hair growth and the runny nose this and worries about heart damage weren't much fun....
Forum: her2group 12-22-2015, 02:14 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

I have been telling the gals in my cancer group to get their levels checked for magnesium, copper and zinc forever and finally last week someone asked her doc to take a look at her magnesium level...
Forum: her2group 12-21-2015, 09:00 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--- part 8 ---

So I learned about naturopathic oncologists and got started with one before I started neoadjuvant chemo. He ran tests that my medical oncologist didn't, even when I told me MO...
Forum: her2group 12-10-2015, 07:47 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

My TCM is in Seattle. I can see if he knows anyone. He is well connected and well regarded.
Forum: her2group 12-10-2015, 02:14 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

-- part 7 --

POST-RADIATION TREATMENT RECOVERY

The first six months are the most critical to tissue repair



massaging my breast
I started doing this during rads and continued to try to...
Forum: her2group 12-10-2015, 10:15 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

--part 6 --

Surviving Active Rads Treatment

I found the room I was receiving treatment in to be freezing; it was the late Fall. I ended up wearing tights under my pants, bringing my own wool...
Forum: her2group 12-10-2015, 10:08 AM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

-- part 5 --

Radiation treatment really bothered me in light of all that I had been through. My MO said that the TCHP was going to dissolve the cancer -- and it had. So why was I going to cause...
Forum: her2group 12-09-2015, 01:59 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

-- part 4 --

Zoladex was hard and made my bones ache. I had a hard time climbing the stairs. I did water-based fasting for round 5 and most of 6 but it was rough going. My MO said that we could...
Forum: her2group 12-09-2015, 01:47 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

-- Part 3 --

From the time I was diagnosed I was of the mind -- if I have to do this awful stuff to my body, how can I do the least amount of damage?

I tracked down a Chinese Medicine...
Forum: her2group 12-08-2015, 04:15 PM
Replies: 48
Views: 36,677
Posted By agness
Re: My leptomeningeal journey

-- part 2 --

When I was first diagnosed they were sure I was metastatic.

I had been breastfeeding through two pregnancies and thought since cancer didn't run in my family that I was cool. My...
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