Been a WHILE since my last post

julierene · 08-07-2008, 12:20 PM

So I have been trying to get back to Texas, my divorce is finally over, all I have left to do is fight over child support and the right to move back to Texas with the kids. I have a new man, who is WONDERFUL! So what's the bad part you might say?

I was taking Tykerb and Xeloda for almost a year in Feb., when I got a blood clot in the vessle that my port is in. Since my liver tumor was gone since November, my onc said he didn't want to put me through trying to balance Coumadin and Xeloda. So he said, "Let's try you on Tykerb alone!" I thought, GREAT! Then last week, I found out with my 3-month liver scan, that one of my old spots that was the largest from Dec. 2005 - was BACK! I was pretty floored that it wasn't the tumor from my 2nd recurrance. To complicate matters, I found out that we had been worried about a liver spot since Dec. 2005 that was actually a hemangioma. WHY can't they tell the difference? They kept think it was scar tissue. When the 2nd liver recurrance happened, it was nestled right next to that hemangioma, and it took a NEW radiologist to figure out that the reason that tumor wasn't shrinking since December 2005, was because it wasn't cancer! So intersetingly, they went back and figured out that I was NED since Nov. 2007, and decided to try me on just the Tykerb.

So now, I get PET scan on Saturday, Brain MRI tomorrow. And I am freaked out. I haven't ever had to worry about my brain, and now I feel like I am constantly noticing a feeling of 'light-headedness'. I don't know what to think about it. I'm still taking Coumadin, and hoping that it's JUST the blood thinners. But I also seem to be having a hard time concentrating and reading. I feel like I'm always tired too. Do any of you experienced women have any ideas or theories that can keep me from panicing till I get my results?

I'm usually so calm, but with the new man building us a house in Texas - I'm terriffied! I guess I wouldn't be so scared if I didn't love my life so much! Thanks in advance Ladies!

Mary Anne in TX · 08-07-2008, 01:50 PM

Hey Girl! My "brain mets turned out to be high blood pressure!!!!!
I'm gonna believe that yours is something totally as easy to fix! I'm so pleased that your life is soooooooo good! You surely do deserve it!!!!!

08-07-2008, 01:55 PM

Is that picture San Antonio? Man! I wish I were in Texas right now - minus the heat. HEHE! Yes, I hope that low blood pressure (for me) might be the ticket. I doubt I am old enough for high blood pressure. But I am constantly low, and the coumadin may be doing something like that. When I was on Lisinopril, I got dizzy spells frequently. One of the nurses actually speculated that it was low blood pressure. I even went and had my first brain MRI because of it. So being in this spot again, sure makes me nervous. Thanks for the well wishes.

I haven't had brain mets before. My bone mets have been gone for 3 years. If it's just a little tumor in my liver, the chances seem less likely to pop up in my brain don't they?

Becky · 08-07-2008, 04:35 PM

I think its good to check the brain BUT I think your symptoms are just anxiety. You just got thrown for a loop girl and right when you were experiencing the sunniest skies you've had personally and healthwise in a long time. It's natural to to panicky and disappointed too. You will sail through this in no time. You've slapped this met away before and you will do it again.

(Also, the blood thinners may be making you feel light headed too).

I'm rooting for you again. Life will be good.

runtolive · 08-08-2008, 08:37 AM

there is a new trial about to begin .. its a phase 2 trial that could be a pivotal trial.. trastuzumab-dm1..

http://www.clinicaltrials.gov/ct2/results?term=dm1

the link says not recruiting yet.. but you would qualify based on tykerb /xeloda dosing history...

you should look into this asap

run to live

lexigirl · 08-08-2008, 11:27 AM

It's good to see your pretty face julierene! I am really happy to read that you have found a wonderful partner. A new house sounds like something to look forward to!

I will agree with the other ladies. Light headedness, lack of concentration, tiredness, could be LOTS of other things besides brain mets. I say NO brain mets. Period!

Sending big hugs your way,
Lexi

naturaleigh · 08-09-2008, 11:16 AM

Welcome back Julierene!!

I am so glad to hear that you will finally be going home, I know that is where your heart longs to be!!

Congratulations on finding someone new and that he is building you and your family a new home!! I am so glad that life is going so well for you, you deserve it!!

Congratulations to on the doctors pronouncing you NED!! God is good!!

julierene · 11-24-2008, 10:06 AM

I have some updates...

I am back in Texas! YEA!
My boyfriend's mother was diagnosed with esophagus cancer and has 1-2 years left to live they say. With that news, he pretty much said I was wonderful - but he couldn't handle a relationship with me. So the house got cancelled, and I am trying to find a way to make it work.

I found a nice paying job here in Dallas, and then 5 weeks later they say "you're great, but we had to lay off 7 people and you were one of them". I was devestated. So now I am on unemployment and still living with my parents. Sucks!!! But at least, I have a roof over my head.

I am on Tykerb/Gemzar after a massive liver infestation. The largest mass is about 5cm. There were so many others that I had him stop counting after we were in the teens. I am so scared.

I finally get back to Texas, I lose my man my job and my health all in the same month. Some days I just feel so damned sorry for myself! I just have to remind myself it could always be worse. I can still walk, breathe, and think.

Mary Anne in TX · 11-24-2008, 10:38 AM

Perhaps a docudrama or book is in order!
WOW! You did get quite a blow in such a short time!
Thank God for family and the fact that they love us and help us!
Remember that you've still got your brilliant mind and your ability to keep rising above!
That guy must be nuts! But we're all so very different when it comes to emergencies! He must have forgotten to stand in that line when it was given out!
No advice, but tons of belief in you and your ability to problem solve your way to a better tomorrow!
I'll be thinking good thoughts for you and sending up prayers!
ma

chrisy · 11-24-2008, 02:58 PM

Oh, Julierene...

Thank you for posting this update - I know you must feel very discouraged and, naturally, afraid. Who wouldn't be? All of that hitting at once...kinda makes you want to just smack the people who get stressed out JUST because of the holidays. They couldn't walk even a block in your shoes.

I'm asking for special loving energy to surround you this week.

Let me summarize the key points in your update.

You're wonderful
You're great
You're still living
You're with your parents
You have a roof over your head (without having to share it with an idiot)
You're fighting with some big guns
You can still walk, breathe and think.

And my own input, you're really strong, and I'm thankful I know you. We're all lucky to know you.

Do not lose heart.

Much love
Chris

Soccermom · 11-24-2008, 04:45 PM

Julierene,
Couldnt have said it better than Chrisy! Wish I could give you a nioce warm hug tho!

marcia

Sherryg683 · 11-24-2008, 09:54 PM

Julierene, I have been thinking and praying for you since I read your post earler today. You and I joined this board around the same time. I hate so bad to hear of your bad turns, it is good that you have your parents to lean on. How are things with your kids. Did they ever consider doing liver ressection or radiation, would it be possible. Just thinking that would be something to consider...sherryg683