Brain Mets, WBR & MRI - Page 2

Believe51 · 08-02-2007, 10:19 AM

A run for my money on talking??? Hope you are in great shape!! Catch me if you can, ha!ha! LOL. My family says they have never met anyone who writes or talks more than me. Of course I explained that is not true and it only took me 45 minutes.....ROTFL!!! Glad I can make you feel warmth with my words.

Until next time My Little Frootloop....

Waiting For A Miracle...and commanding one NOW!!>>Believe51

Lala · 08-03-2007, 11:02 AM

Nicola
You are in my thoughts and Prayers. I remember you and your sister from the chat room a long time ago. I want you to know healing is possible. I had brain mets treated and now they are gone. Keep the Hope alive and remember you are being prayed for sister.
Hugs to you!

VaMoonRise · 08-07-2007, 12:25 PM

Hi Everyone,

Thanks so much for keeping this thread alive. I am going to post here to keep those of you who having been following this thread up to speed and then copy and paste a majority of it into a new thread about my weekend from #$!! so as to get more info from others as well, hope you all don't mind.

I guess for starters I should let you all know that my insurance company still hasn't come through with authorization for the Xeloda. The entire Reconsideration Review didn't go in until yesterday morning so they have until tomorrow morning to make their decision.

I ended up in the hospital on Friday and just got home yesterday afternoon. I went in for my infusion of Herceptin on Friday morning and was telling the nurse about how much pain I had been having in the liver and we decided to run some blood work to check my liver function. Well, on the drive home (good thing hubby was driving) she called my cell phone and told me not to go home, to go straight to the hospital, that the blood work came back with all of my liver functions elevated sky high and that they thought that I had a blockage in my liver and would need to have a stint put in. As you can imagine I was hysterical, all I could think was oh my gosh I am going into liver failure, why can't I catch a break, how can this now happen too after we just went through the whole brain met's ordeal. She said they had already contacted the hospital and that they knew I was on my way and that they would do a sonogram of the liver as soon as I got there. Well, they did the sonogram and of course you have to wait for forever to find out anything. To make a long story short, there was no blockage but my liver function test came back as follows:

Bili Total = 4.3 SGPT (ALT) = 1157
(normal range 0-1.0) (normal range 30-65)

SGOT (AST) = 720 Phosp. Alkali = 229
(normal range 15-37) (normal range 50-136)

Of course it being Friday and after five o'clock my oncologist was off for the weekend and I had to deal with the oncologist on call who didn't show up until Saturday around 3:00 PM. The oncologist on call was horrible!!! He came into the room and I reached out my hand to introduce myself and he side stepped me, never shook my hand and said "I am going to go order a sonogram of your liver. I said "I already had a sonogram, we have been waiting on you since Friday afternoon to come tell us the results." He seemed perplexed and said he didn't see that in the computer and would be right back, lol. Well, he came back and told us there was no blockage and that they were going to keep me in the hospital and were going to keep running blood work to monitor my liver functions and then he started to walk out of the room, I said wait a second please, I have some questions for you. By this time I was in tears with him and explained what had happened on Friday and how I ended up in the hospital in the first place. He rudely interrupted me and told me how he was on call and had been to four different hospitals already seeing other patients and that was the reason he was late in getting to me. Oh, my gosh, I wanted to scream in my frustration at this point. I said I am not blaming you for anything, I am just trying to explain what has been going on and I want to ask you some things before you leave. I told him about how I was supposed to be on Xeloda already and that because I hadn't been my liver was now in the shape that it was. He seemed nonplused and said well, you will have to wait for your regular oncologist on Monday morning to get that sorted out. I asked if there was anything we could do now to bring my liver functions down and if I was in liver failure as of now, he said "Well, there isn't much we can do right now besides monitor things, your liver isn't in failure and it isn't critical at the moment but it is in bad shape, the tumors in your liver are pressing against blood vessels causing the liver to struggle to function and that we will have to wait for your onc on Monday morning." So there I was in the hospital from Friday afternoon until Monday afternoon basically having nothing done about my liver except monitoring the blood work on it. When my onc showed up Monday morning she couldn't believe that they had kept me in the hospital all weekend and had basically done nothing. She said that the on call onc should have taken me off of the medication called Diflucan (used to treat thrush of the mouth which is caused from the steroid) immediately because it is hard on the liver and raises your liver function numbers and that he should have started me on Xeloda right away and sent me home with instructions to see her as soon as possible. She got me started on Xeloda before I left the hospital but you wont believe this, I must have Murphy's Law stamped on my forehead, they were supposed to bring the Xeloda up to my room for me take before I left the hospital. Well, wouldn't you know it, it took them forever to bring it up to the nurses station and once they did they put it in the wrong patient box so I was stuck there along with the nurse for several hours waiting and wondering what was taking so long before they finally figured out what had happened. As soon as I got the Xeloda and took it they released me from the hospital, as they were wheeling me out I had such an urge to stretch my arms out to the sides as I rode down the halls saying "Free at last, free at last!" lol.

The only thing that got accomplished while I was there was that the steroid I am on also was causing my glucose levels to be very high, so they kept monitoring that too and giving me insulin injections, they call it temporarily diabetic because of steroids, they also accomplished getting a blood return on my port which I had been having trouble with on my last 3 infusions by using Alteplase to flush out any debris.

My liver function numbers the morning I left the hospital were:

Bili = 5.3 SGPT = 975

SGOT = 535 Phosp. Alkali = 272

So there is some improvement in all but the Bili and Alkali. They will check them again on Friday when I go in for my monthly Zometa. They are going to hold off on my triple dose Herceptin every three weeks for a while.

Has anyone else ever experienced such high liver function numbers and if so can you please tell me about your experience?

Since being at home we have had to buy enough of the Xeloda from the pharmacy, out of pocket, to get me through until hopefully the insurance company authorizes it tomorrow morning. Will check into being reimbursed if they authorize it.

Now we pray and hold fast to our faith and trust that this Xeloda is going to work. I don't even want to think about what will happen if it doesn't with the shape my liver is in right now.

Believe51, The only reason you haven't heard from me or I haven't out talked you yet is because I was stuck in the hospital away from my computer, lol. Watch out though cuz here I come, lol.

Love & Hugs,
Nicola

VaMoonRise · 08-07-2007, 12:30 PM

Thanks so much Lala, I need all the inspiration I can get right now. I absolutely love your picture, truly gorgeous.

Love & Hugs,
Nicola

tousled1 · 08-07-2007, 01:55 PM

Nicola,

I don't know how you managed to stay put in the hospital all weekend with the way you were treated. It was certainly uncalled for.

At least now you are home and hopefully on track. I'm happy to hear that the WBR is over and that you started the Xeloda. Perhaps Xeloda is just the ticket you need to get to NED. I will keep you in my prayers.

hutchibk · 08-07-2007, 05:25 PM

I am not totally surprised by your hospital story. Why are they so inefficient? I hope your Onc calls the 'on-call' onc on the carpet. She should have a HUGE bone to pick with him and you should consider filing a grievance/complaint with the state medical board. There is no excuse for his non-chalance. Anyone who hates their job that much should change careers.

Vanessa · 08-07-2007, 09:02 PM

I am so glad to hear that you have a plan of action. I am so sorry to hear that you have been going through so much, but I hope everything goes smoothly for you. I will be keeping you in my thoughts and prayers.

tousled1 · 08-09-2007, 10:42 PM

Nicola,

I have a newly daignosed brain met and I am going to be treated with CyberKnife. My brain met is only 5mm so it is very small. You may want to do some research on CyberKnife, it's the newest technology but unfortunately is not available at all cancer centers. The good thing with CyberKnife you can contnue on your regular chemo while undergoing CyberKnife and cyberknife is accurate to within a mm. If you don't have many brain mets CyberKnife may be your ticket. I was under the impression that if you had WBR you could have it only once -- or maybe it does depend upon the dosage. I'm new to the brain thing as you can see.