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CarynRose

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Well, today I'm filling up on protein and removing all carbs and sugars from my body so that tomorrow's PET/CT scan will show up well. I'm really nervous because I have no idea what will show up on the scan. Usually, I have some sense, some gut feeling, but it's been five months since my last scan and the CNS mets really suprised the heck out of me.

Who knows what has been going on between my ears and my knees since October 23rd? I know that I have some bone mets in my right hip (and arthritis in my left hip). Maybe the Zometa has caused that to go away.

The best outcome would be to find nothing in any of the organs or bones. I could really use to be off chemo and just stay on suppressant therapy while using supplements and some complementary treatments that I've heard of (Ginger and Garlic! -- heaven help my tongue). (Edge, you will be hearing from me soon.)  I also want to go to physical therapy to work on getting my face working too. And, of course, I need to get my strength back.

The not so good outcome would be find discover that there is cancer in my organs/bones. I'd have to go back on chemo then. That would probably mean losing my hair and being rundown again. If that is G-d's will, then I pray for the strength to get through this bout.

Tomorrow, they will also take my blood counts and I hope to find out why I'm so fatigued and why my balance is so off.

My dear friends and family, please pray that G-d heal me.


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Caryn
Primel

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Reply with quote  #2 
{{{{{{{{{{{{{Caryn}}}}}}}}}}}}}}, wil be thinking of you even more tomorrow... you deserve a break!!
 from Catherine
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Reply with quote  #3 
Caryn,
You have my prayers for tomorrow.
I am going to keep repeating over and over again
STABLE then NED
STABLE then NED
STABLE then NED

I BELIEVE IN YOU!!!!!
Love
g


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Calico

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Reply with quote  #4 
Caryn,
you are the sky, nothing can stick to you
(from a bc movie on lifetime tv - I forgot the name)

Thinking about you and sending prayers....waiting for results is almost as bad as getting diagnosed....anxiety sucks!!!
Dear Lord, please protect our dear Caryn and have her heal and feel good again. Amen.

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fitztwins

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Reply with quote  #5 
I always hate the special diet.

Best of luck in your scans.  I think I will have a lifetime supply to ativan to help me through all of my scans.

Hang in.

Janis

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Reply with quote  #6 

I hope that all comes out fine and you get a chemo break!

CarynRose

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Reply with quote  #7 
Well gang -- Essentially, I'm STABLE.  Other than a 'warm' spot on a rib, everything seems the same as last Sept. except that some of the SUV's (can someone tell me what that stands for?) levels are higher than they were the last scan.

Doc wants me to start on Xeloda by mouth 2 weeks on (2000 mg a day) and one week off (though I've read that every other week might be better -- any input on that appreciated).  I have a feeling that I'll be able to recover from the rads and do the chemo and be better in a couple of months.

They want to do one more CSF check and if all is well there, I will also be able to get the Ommaya Reservoir out, because if, G-d forbid, we should need to do another type of chemo, there are those that pass through the BBB.  And if we had to do Depocyt, I'd be happy to do LPs to get it every other week.

As I stated, I want to start more alternative and supplemental things too.  Edge, you'll be hearing from me soon. 

Love,
Caryn

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Caryn
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Reply with quote  #8 
STABLE MABLE YAHOOOOOO!!!
I am SO HAPPY FOR YOU!!!!

I did Xeloda. I started at 3,000 a day and then they reduced me to 2,000 a day. I think that is it- I can't remember.  They have to tinker with your dose if you get side effects.

I did two weeks on then one week off.

The biggest side effect was the runs. So to counteract it, every morning I would do a shot of immodium AD. I also had hand and foot syndrome. I used Dr. Scholls medicated foot cream that Ferne had given me and it worked great. I alternated it with Bag Balm too.

It is so nice to just take a pill instead of getting infused.

Caryn, I am just so happy to read your news. YOU SO NEEDED A BREAK.

Lori and Janis NOW IT IS YOUR TURN FOR A BREAK!!!

Love
g


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Analemma

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Reply with quote  #9 
Hey!   Good news for you!!!!

I've had no internet for days and I'm paying for a couple of hours in McDonald's at the beach.  But I am so glad to hear you will get some time to recover a bit.  Xeloda is also my next agent, onc has been talking about it since November, but so far I've been holding stable, too.

I'm so glad, Caryn.

Brenda
Calico

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Reply with quote  #10 
Yayyyy Caryn!!!!
Hope Xeloda will rock!!!!!

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Karen1956

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Reply with quote  #11 

So happy for you...such good news...Hugs, Karen

Jeann46

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Reply with quote  #12 
First of all, congratulations on the good report! SUV refers to "standard uptake value" and measures metabolic activity. Usually anything over 3 indicates metabolic activty as opposed to scar tissue.

It's interesting to hear how different people are told to prepare for a PET/CT At my first facility, I was simply told not to eat anything 6 hours before. The next place was the same. Then I went to a third facility and they told me no carbs or sugar for 24 hours prior to the test and no chewing gum as well. The last one I went to said no carbs or from dinner on the day before and no chewing gum for 24 hours before.
Not to sound like a facility hopper - there were valid reasons why I ended up in different places - but I think that just for the chance of a best read, I will do the strictest preparation for the next scan.

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Jeanne
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Reply with quote  #13 
Jeanne - me too- different places, different protocols. I know what you mean. I never understood why gum is always forbidden before every procedure or test!

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Reply with quote  #14 
Caryn- FANTASTIC!!!! Sorry it took a while... haven't been on....haven't been feeling too good BUT

YOU NEWS IS GREAT!!!!!! I am smiling ear to ear!
CarynRose

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Reply with quote  #15 
Thanks for the explanation of the SUV levels.  Looks like the spot on my rib would qualify for under 2.5....that's good.

Other than that, the SUV levels appear higher, but then again, we haven't been doing anything to them to 'cool' them off.  Now that we'll be doing Xeloda, hopefully we can cool me off.

I can actually feel the bone met in my hip.  I am just tender with it and look forward to my next Avastin/Zometa treatment, which will be this coming Wednesday, the week before we head out to Las Vegas, wheelchair/walker and entourage..... LOL

I'm just looking forward to getting back to ME.  Hopefully Vegas, playing a high roller, and Donny Osmond will help with that.

Love,
Caryn

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Caryn
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Reply with quote  #16 
Oh wow, Caryn. I've been gone for a while and I'm so glad to read this thread and learn that you are rockin' steady! Hope your trip to Vegas is lots of fun!

{{{BIG HUGS}}}

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BornInWA

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Reply with quote  #17 
Caryn,

I love good news!  Hope you have a great trip to Las Vegas!

Hugs to you!

Beth

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