My Turn For Brain Mets

Hi Ladies,

After two years (to the month) of being NED, a tumor was found in my right occipital lobe. The good news is that it is still pretty small(8mm) and they only saw just one.

I will be consulting with a doctor at UCSF on Monday to discuss treatment. Anyone have any thoughts on Gamma Knife vs Cyber Knife?

This news comes on the heels of two other bad things that have happened in the last month:

After nearly 30 years with the same employer, my husband may be out of a job, and just last week we learned that someone has been fraudulently using my husband's social security # and other personal information to obtain credit.

You know it's funny, but my biggest fear in my ordeal with cancer is that someday we might not have insurance or that I would max out my lifetime limit. I feel that one of the reasons I'm still here is that we have had excellent coverage and I have been able to fight this disease very agressively.

When I was first diagnosed in 1997 my prognosis was not good, and that is why I wanted to have the stem cell transplant. Then in 2001 when I had recurrence to my liver, I did the Taxotere and Herceptin followed by liver resection to make sure we got it all. Then I participated in the UW vaccine trial hoping that would better my chances even further. So here I am 8 years later wondering if we will have medical insurance in a couple of months, and if any company even accepts me, preliminary estimates of the premiums are outragious.

My emotions are running wild these days, but mostly I just get mad. I still have plenty of fight left in me to beat this disease, if only our hands don't get tied in the fight to get insurance. By the way, doesn't look like COBRA coverage is an option for us either.

Sorry to unload on all of you, but I know you don't really mind. We will get through this trying time, and it will probably make us stronger, it's just always overwhelming at the onset!

Thanks for listening,

Kim in CA

Hi Kim,

I live in the San Francisco bay area (born & raised all my life), so I happen to know a few doctors around here. By hearsay, Dr David Larson is one heck of a doctor for gamma knife treatment (not sure if Univ of Calif SF does perform cyperknife?). Hope he is the one that you are consulting with about your brain met.

If you want to know more about local doctors around here, feel free to email me at: acrobaticfan@yahoo.com

Sorry about a handful of downtimes that you have been having, but listen, there WILL be a better tomorrow!!!! I can get mad too, but we do get our good days also! I recall my old friend's mother often reciting: "You will have to experience the sorrows in order to experience the joys; otherwise, the joys won't be as joyful & appreciated." Right?

Hang in there Kim; life can be one big poop, but keep in mind that you are NEVER alone -- we are cheering on your side!

And please keep us posted, OK?

Hugs ~ JO.

Kim,

I will keep you in my prayers.

Rhonda

[StephN]

<< Anyone have any thoughts on Gamma Knife vs Cyber Knife? >>


WEll, Kim many of is here are passing over this same "bump in the road." But we can and DO get over it. The bummer is that at the time you are looking at an expensive procedure your insurance may be cut.
The good part about a brain mets situation is that the docs act quickly, and you I am sure you will have your met addressed within 2 weeks.

As far as the two procedures you mentioned go, I asked the same question to my Gamma Knife specialist. There is no center in Seattle that presently offers cyberknife, but I could have gone to S. Cal for this.
My doc said that normally they like to use cyberknife for tumors that are in especially difficult places elsewhere in our bodies than the brain.

Gamma Knife is especially for the brain and is accurate to within 1mm and that is pretty darn close! So, the risk is very small that anything in the area surrounding the tumor will be affected by that procedure.

Don't let all this get you down, the Gamma Knife itself is painless and soundless. So for treatment it is a breeze - the icky part is how much Decadron you need to get rid of any inflammation caused by the met. Yours is small so hope you will not have to be on that for very long.

Just keep posting your questions and progress, OK?

[StephN]

P.S. That brain met may have started growing before you took the Vaccine. Have you reported this to the vaccine group at the U of W? I am sure they are interested.

Kim,

Not sure why Cobra would not be an option for you, please check into this carefully. It may well be the Answer and a bridge to new coverage. Please let me know what you find out. I am a group health administrator and would like to know what you are being told.

Sassy

[Lolly]

Kim, I'm enrolled in a medical pool for high risk people, you may want to check this option out. Here's a link to the web site for California's risk pool:

California Managed Risk Medical Insurance Board
http://www.mrmib.ca.gov/

I'm sorry you have all this added worry on top of dealing with this latest challenge. You will be in my thoughts and prayers.

<3,
Lolly

Dear Lolly, Sassy, Steph, Rhonda and JoJo,

Thanks for the good information and kind thoughts. I will be looking into the Major Risk medical program because it sounds like the only option for us( we were told that COBRA won't be available because the company will no longer be in business).

Will keep you all posted.

I'll be gone for the weekend. I'm taking a little trip with my therapist (The one with four hooves and the long mane and tail!)

As Winston Churchill once said: "There is something about the outside of a horse that is good for the inside of a man"

Love, Kim

It makes me so mad to see you have to face insurance and financial problems when you have to focus to get better. Why the richest and most civilized country in the world does not provide free Medical for people in need? I send you good energy, don't worry you must get better and you will get better and stronger.