Mar 18, 2013 - 5:35 am
I haven't been around here much, as I've been back to work and overall was doing pretty well on the Xeloda & Avastin.
I had six months of Folfox & Erbitux (24 weeks of treatments - Folfox on the odd weeks, Erbitux on the even weeks)
then in late July 2012, a surgery to resect the liver and to remove "the bag" (which I had for seven months)
we waited 4 weeks after that surgery to start Xeloda and Avastin on Sept 1st. This was the "maintenance chemo"
it worked, for about 4 months... the past 2 months it hasn't worked and it showed in my most recent CT scan.
the Oncologist wanted to dive into Folfuri and Avastin, I wanted a more liver directed therapy to just focus on the cancer in the Liver.
Transplant is not an option for me. Liver resection is not an option for me. And, in my mind... cancer for life isn't a really good option.
One time I read somewhere on CSN of the progression of the cancer learning how to grow around the cancer, or the chemo kicking our ass so much that we have to change to a weeker dose or a weeker chemo.
anyway, I've been lurking and learning here and many other places. Asking lots of questions and trying to get second and third opinions. I've written letters, called several different types of doctors and also had conversations with the alternative therapy guys and gals.
Basically, I came down to three choices for me.
1. Liver directed therapy... y90, aka: SirSpheres or radioembolization. This option heats up or burns the tumors in the liver, without treating the rest of the body.
2. Liver directed thereapy... HAI Pump. Everyone around here in medical team, says it's old school and no one uses it anymore. Sloan-Kettering speaks very highly of this and I have spoken to them. HAI Pump pours the chemo directly onto the liver. treating only the liver and not the rest of the body
3. Liver directed thereapy... Cryosurgery where they freeze the spots within the liver with essentially Dry Ice.
and obviously, the other options are folfuri, avastin and all the other chemo cocktails.
in my last CT scan on March 3, 2013 the cancer has grown in my liver. My CEA level increase, and they suspected there was a new spot or growth on my adrenal gland and kindey. (left side) they wanted to dive right inot folfuri, yet I had my eyes focused on a liver directed therapy. But, if the cancer had spread, my three options for liver directed therapy would be off the table.
so, I demanded a biopsy of the adrenal gland. not an easy test... they boipsy'd it under a CT scan and it was definately a costly proceedure. But it came back in my favor. NO CANCER spread.
I have been totally off chemo since Feb 28th and need to be off for six weeks, prior to y90 treatments. I am going over to Cleveland Clinic on Friday for hte mapping of the liver and the spots, and they put blockers in the other arteries to prevent the y90 beeds from going where they are not supposed to go.
After the mapping proceedure this Friday, I'll know if I qualify for the y90 treatment. It sounds like around 4,000 of these treatments are done per year. If I qualify, my first treatment will be the week of April 15th
I'm nurvous and excited about this direction I am taking.
nervous to be off of chemo for six weeks, while we know the cancer is alive and active within my liver.
I'm excited because I already feel better than I did any month I was on chemo the past 14 months.... and excited for the potential to burn up those tumors in my liver to the point where I might be able to stay off chemo for a year or more.
my doctors did NOT bring all this up to me.
I had to read, learn, ask questions... be my own advocate.
Be you own advocate!
Spend less time in a pitty party about what you have, and spend more time getting more information and discoverying more options for how you're going to beat this stuff.
Giddy Up! Battle Mode continues!
My most recent blog: http://www.caringbridge.org/visit/joemetzger/journal