Finally some Good News!

VaMoonRise · 08-22-2007, 01:27 PM

Hi Everyone,

Starting about two weeks ago we have had the biggest nightmares of our lives. It first started with the news of me having multiple brain mets and having to go through WBR, then with me being told by phone call on my way home from chemo, not to go home but to go straight to the ER because they thought I had a blockage in my liver and needed a stint put in. Luckily I didn't need a stint put in but my liver function was/is in terrible shape and they kept me in the hospital all weekend. I had been very jaundiced and extremely weak for weeks.

The worst was the Friday before last though. I went in to have my monthly Zometa and they ran blood work while I was there and the blood work came back showing that my liver was in even worse condition now and that I needed to see the nurse practitioner. The nurse prac. gave me a very cold and blunt prognosis of just a couple of days, maybe weeks to live and told us to go ahead and contact Hospice now. Well, you can imagine our shock, horror and utter terror. It made no sense, how could I be dying when I was up walking around, eating well, feeling pretty good over all except for the pain in my liver and being tired. The nurse prac. even went as far as to call me a living miracle already because she couldn't believe that I was up walking around. This being a Friday made it all the worse because my Onc. wouldn't be available until Monday morning sometime. What if I died before then and Billy later found out that something could have been done to prevent it. The weekend was pure hell for us. We had to contact family members and tell them that I had only days or weeks left to live. Telling my sisters was one of the hardest things I have ever had to do in my life and poor Billy was frantic as all get out all weekend watching me for signs of rapid decline. Well, Monday finally rolled around and we were able to get in to see my Onc. and her prognosis was completely different from that of the nurse prac., it was like night and day. She couldn't believe that the nurse prac. had told us that and couldn't state enough how wrong the nurse prac. was. It was the biggest sigh of relief that Billy and I have ever breathed. You can imagine all of the emotions we went through and how relieved and angry my family members were at the nurse prac. for putting us all through that. You can read more about this by going back to my posts titled "Weekend from H, E, Double Hockey Sticks" or "Kicked in the Teeth..."

To make all of the above even worse, as you know, we had been waiting to get me started on Xeloda ever since I had WBR and my insurance company kept denying us. We were down to our last appeal and all of this waiting and not being on any chemo of any kind was only allowing my liver function to grow worse and worse and by the day. Every day was like a nightmare until my Onc. was able to get me on Xeloda after my weekend hospital stay. We also went ahead and started paying for the Xeloda out of pocket until we got the final answer from the Ins. Co. Luckily after a lot of phone calls by my Onc., an advocate at the cancer center, myself and a plethora of paper work the Ins. Co. finally approved it.

I had drastically changed my diet after being given a death sentence. I went to eating fruit and veggies all day long, no red meat, no sugar at all and nothing to drink but lots and lots of water. Just by drastically changing my diet and lots and lots of prayers I was able to get my liver function numbers to stop jumping sky high repeatedly in just over 3 day periods as it had been doing since before going into the hospital. I have been on Xeloda now for 2 weeks, I am on my one week off right now which started on Monday. I just had blood work done yesterday to recheck my liver function and I am ecstatic to tell you that my liver function numbers have started to drop. My Bilirubin went from a 12.3 to 11.7, SGPT from 759 to 409 and my SGOT from 453 to 242. I am thrilled to pieces as is my Onc., she said Xeloda can take up to a month to start working in some patients and this is a very good sign that mine has already started to work which is incredible since I have only been on it a short time. She also said that because I haven't had any side effects as of yet from it that she is going to increase my dosage from 3 pills in the morning and 3 at night to 3 in the morning and 4 at night. If I start to get any side effects I am to stop taking 4 at night and call her immediately to let her know.

I will have my liver functions tested again on the 27th and I am very optimistic that they will show even more impovement in my liver function. I will be sure to keep you all posted.

I have a question, the past 3 days I have had some slight nausea on and off and I am wondering if this is from the Xeloda or possibly from me being weaned off of the steroid? I was anemic when I had my liver functions tested yesterday and they had to give me a shot of Aranesp, can being anemic cause nausea?

Thanks everyone for all of your words of encouragement, inspiration, wisdom and prayers. I love you all so much!

Love, Hugs & God Bless,
Nicola

tousled1 · 08-22-2007, 03:00 PM

Nicola,

That's wonderful news! I can't even begin to imagine how you felt after the nurse practioner spoke to you. I'm so happy for you that the Xeloda seems to be working and that your numbers are getting better. I will keep you in my prayers.

caya · 08-22-2007, 03:21 PM

Nicola,

So happy to see your post and that you are doing better. That NP should be given a severe reprimand - I hope your onc. will look into this.
The most important thing is that Xeloda seems to be working its magic -
All the best to you
caya

dorinda · 08-22-2007, 03:38 PM

so happy about the great news. i understand the excitement of the numbers going down. i have ben wondering about you and how the meds were working on you. this is super great news.keep us posted. i will keep you in my prayers dorinda

08-22-2007, 03:57 PM

Nicola,

That is very good news, and I'm very very happy for you. The NP should be spoken to, at the least by your oncologist. I can imagine that right now your sole concern is getting stable but I wish I could give her a piece of my mind. What a terrible thing to do! Again, so very happy she was wrong!

chrisy · 08-22-2007, 04:24 PM

Nicola,

I had read your other two posts - what can I say. You were certainly ready for some good news - and you finally got it! As well as the Xeloda. So GLAD things have turned around for you.

I think you should try and get special dispensation from your onc in view of the TWO disastrous weekends. Get his/her cell phone number and make a deal that he/she be "on call" for you on weekends. I'm serious - what happened to you is outrageous. It seems your onc thinks you have a good chance of hanging around for a good while longer - if some yahoo tries to tell you differently on a Friday night you need to get a 2nd opinion from someone who "knows" you!

Again, I'm so glad things are looking up.

kareneg · 08-22-2007, 05:00 PM

WOO HOO!!!!!!!!!!!!!! I just knew you would get good news hunny! Love yah

lexigirl · 08-22-2007, 05:35 PM

That is TERRIFIC news!! I am thrilled for you, too!!

Hugs,
Lexi

Becky · 08-22-2007, 05:44 PM

Yeah! You really deserve a break and it looks like you're going to get it. You've had some rotten luck with the evil and misinformed nurse practioner (even I really work hard to make SURE I have my facts straight when I post on this board because I want to make sure I don't misinform anyone - and I am just a lay person)!

I am very happy for you (and Billy too because I know our loved ones need a break just as much as we do).

Big hug to you