This wk things could change, I'm nervous.
 

Monday morning (tomorrow) is chemo, & this Wed. I have my first PET/CT since my recurrence in Sept. 09. Due to my femur surgery I was "only" on Herceptin & Zometa from Sept. thur Nov. It wasn't till Dec. that we added Navelbine. I sure hope my scans show this is working? Adding the Navelbine so late in the game concerns me. Especially since my onc reduced the dose each wk instead of giving me Neupogen. (I'll be asking her why she did that?!)

Now that I've changed insurance I will be running out to see Dr. Slamon again if this isn't working. I'm still concerned after my last PET/CT because they weren't sure if it was in my liver or not? PET showed low activity...but CT showed nothing in liver? But that area has pain so I can't help but worry. It's bad enough it showed up in bones and axilla last time...I hope this Herceptin/Navelbine/Zometa has done it's job...especially since it's easy to tolerate. I sure have alot of anxiety thinking about my upcoming scan.

Once stage IV is it normal to choose the easier combo's first then to hit it hard?

Chelee

Re: This wk things could change, I'm nervous.
 

Chelee,
I know this is scary, but it's so good that you get to gather more information, information is power...and I'm so glad you got your new insurance! Now you'll be armed and ready to do whatever you need to do. I'll be watching for news. B R E A T H E ...

Re: This wk things could change, I'm nervous.
 

Have you told them you feel pain in the liver area?
It might be worth making sure they do a liver function test (LFT) when they draw labs. It's not automatically done.
In terms of knowing whether things did the job, make sure schedule disruptions are factored in before abandoning Navelbine. You know.."leave no tool behind". (unless you're talking about exes)
How often are you getting Zometa? There is some interesting info on getting more than just bone met utility out of Vitamin Z:
http://her2support.org/vbulletin/showthread.php?t=39563

Re: This wk things could change, I'm nervous.
 

Chelee,

Please know you continue to be in our thoughts and prayers. Please keep us posted on your scans.

Re: This wk things could change, I'm nervous.
 

Rich wrote:Have you told them you feel pain in the liver area?
It might be worth making sure they do a liver function test (LFT) when they draw labs. It's not automatically done.

Rich I know when ever I had blood work done this was always done, a complete CMP Panel that included the Liver panel.
I still to this day have it done when I see my Onc every 4 months.

Chelee praying that all turns out well on your PET/CT Scan.

Re: This wk things could change, I'm nervous.
 

Rich, my labs always include a CBC, CMP, & CA29.27. All my numbers have been in normal range. In the past I've had them go up and back down a little...but nothing too worrisome. But lately they have been great. I do have a seroma in that area that has gotten really hard after 4 yrs...so maybe the pain is coming from that?

I've mentioned this pain to my onc so many times it's ridiculous. She just doesn't seem concerned. But the pain is worse now then it's ever been...it's constant. I should get my PET/CT results back by Friday & I'll go from there. Hopefully this combo is working, & if not I will go out to see what Dr. Slamon has to say?

I just checked my calendar & the first time I got my Zometa it was seven wks apart...now this time it will be eight? (Not sure why my onc did that?)

Good point about the "disruptions & Navelbine". Point well taken...thank you. Also thanks for the link on Zometa...I have some reading to do. :) Although I've done quite a bit of research on it before. I was always pushing my onc to let me have it long before my bone mets in hopes to prevent them...but she always had an excuse not to give it to me. (It's called keeping the costs down.) Now because I have mets...she has no choice.

Chelee

Re: This wk things could change, I'm nervous.
 

You keep fighting girl!! Thinking of you this week during scanxiety and beyond. Hope all the news is good, all the side effects are minimal and all the cancer-butt-kicking goes into overdrive.

Re: This wk things could change, I'm nervous.
 

Chelee,

I will be praying for you and will keep my fingers crossed for good results. All my love,

Paty

Re: This wk things could change, I'm nervous.
 

Thinking of you as you get your scans done. Pain in the liver area doesn't necessarily mean anything. I had and occaisionally have pain in that area and theres nothing. My brothers whole liver was eaten up with cancer and he never did have any pain in that area, so who knows. I am glad you got new insurance, maybe things will go smoother now...sherry

Re: This wk things could change, I'm nervous.
 

Chelee,

Will be sending positive thoughts your way and keeping you in my prayers.

Vicky

Re: This wk things could change, I'm nervous.
 

Sherry, It's a bit of relief to hear your liver pain turned out to be nothing. I'll just keep taking one day at a time.

Thanks everyone for the good thoughts and support...much appreciated.

Chelee

Re: This wk things could change, I'm nervous.
 

Hi Chelee
Thinking of you and BIG hopes that your scans show BIG improvement. Glad you have new insurance and that you are determined to go back to see Dr Slamon.Getting a second opinion was one of the best things I did (and would do again even in I have to come across the pond!!)
Ellie

Re: This wk things could change, I'm nervous.
 

Chelee,

Hope you scans go well today. Will be praying for you.

Amelia

Re: This wk things could change, I'm nervous.
 

good luck Chelee! im thinking of you <3

Re: This wk things could change, I'm nervous.
 

Chelee,

I want to thank you and Becky for the links. I have now learned that caffeine can raise your markers. I have been drinking a lot of green tea. I drank so much Friday my eye started twitching.

Do you think it could raise the HER2 serum test also?

Amelia

Re: This wk things could change, I'm nervous.
 

Chelee,

You are in my prayers and thoughts!

hugs,
shobha

Re: This wk things could change, I'm nervous.
 

Chelee,
Thinking of you...As a liver mets gal, I had pain long before my met. I think it is a function of the medications we take and not necessarily the sign of a recurrance. If you markers are looking good that is a great sign and of course a back up by meeting with one of the best Drs. in the country is also a GREAT approach.

You go girl....

I too have wondered about approaches...load up on the chemo and kill the beast or slowly wear him down. Not certain which approach is best. Hopefully, Dr Slamon will have some thoughts in that regard.

Praying for a clean scan for you....Love...Lori

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Hi Lori
I think you have hit on a really good point, Is a high dose best or is metronomic treatment the way forward. I know Rich has posted about this approach and there seems to be some positive results from xeloda and tykerb used in this way.
There seems to be a consensus that in about 5 years we will have wide range of targeted treatments that may not kill the beast for good but may keep him in his cage till the cure!
Hugs
Ellie

Re: This wk things could change, I'm nervous.
 

If the scans don't show any cancer in your abdomen you might want to ask for an ultra sound of your abdomen.
Sometimes we get other health problems. I had some discomfort in the area where my liver and gall bladder are located. The naturopath did some testing and told me my gall bladder was "stressed". I asked for and got an ultra sound of my abdomen. My gall bladder was full of gall stones. I avoided surgery by taking some medicine the naturopath prescribed to dissolve gall stones. It took a couple months to resolve the problem, but my gall bladder is better and I avoided major surgery with general anethesia which I hate.

Re: This wk things could change, I'm nervous.
 

Chelee,

You go girl! (You 'rock'! :)

I'll be thinking of you.

Re: This wk things could change, I'm nervous.
 

I'm there in your corner Chelee. I am sure your scans will show some improvement. Keep us posted.

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Will you be bringing that funky walker to your appointment?

Re: This wk things could change, I'm nervous.
 

Chelee,

Wondering how you are this morning. Hope you post soon.

Amelia

Re: This wk things could change, I'm nervous.
 

Chelee
Thinking of you. Hugs. Michka

Re: This wk things could change, I'm nervous.
 

Becky, I don't want my scans to show "some" improvement...I want them to show TOTAL NED improvement. lol ;) I'm not asking for too much am I. My last TM's were down again...they have dropped to 23 which is good. So adding the Navelbine has helped...I just hope it's done a good job?

Lori & Ellie, I'm glad you both caught my question about the best approch for attacking when your stage IV? It seems to me they "use" to hit it hard...but now they all talk about how it's not curative at this point so it's all about the QOL. Which that is important to me...but it would be nice to hit it hard enough that I could get lucky enough to have some NED time again. I've also been hearing they like to save the big guns for later if it becomes necessary. My main concern is not going so easy on "it" that it gets more time to spread. Has anyone else heard their onc feelings on this topic? Especially once stage IV.

Rich, No I won't be bringing my funky walker. lmao I'll have you know I've moved up to a funky cane! :) It comes in handy for hitting people. lol

Tomorrow is the big day...don't forget to be sending those good thoughts & prayers...I sure need them. My scanxiety is off the charts today...I can imagine how I'll feel in the morning.

Chelee

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Chelle,

Have I ever told you I love your picture? Sometimes I feel just like that all day long! lol

Praying for your scans tomorrow.
Hugs and blessings, Alice

Re: This wk things could change, I'm nervous.
 

Good luck tomorrow Chelee.

all the best
caya

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Chelle Good luck tomorrow. I am praying for good results.

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Sending you positive vibes for a NED scan tomorrow!

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No walker? I guess you graduated. You make it sound like you're "House MD".
If need be, you could reasonably add Xeloda to Navelbine. Maybe some Femara as well, since having Herceptin may have bosted the "weak" ER side of things. Could also go for a Her 2 blockade by adding Lapatinib. Might be worth asking for a serum her2 level and cell search to get a view on things.

Navelbine (w/Traz, liver friendly, w/Cap)
http://her2support.org/vbulletin/showthread.php?t=42261

Letrozole
(monotherapy, with chemo, w/Sorafenib, in er-, immuno-synergy, on-off strategy resensitizes)
http://her2support.org/vbulletin/showthread.php?t=43285

ER/Her2 crosstalk (combination therapies etc):
http://her2support.org/vbulletin/showthread.php?t=38998

Lapatinib/Herceptin combination (Her-blockade, Lap passes BBB)
http://her2support.org/vbulletin/showthread.php?t=41397

Circulating Tumor cell test (interpreting, vs marrow)
http://her2support.org/vbulletin/showthread.php?t=41709

Re: This wk things could change, I'm nervous.
 

Hi Chelee,
It's the big day. Have you in my prayers today.

Re: This wk things could change, I'm nervous.
 

Adding my prayers for you, Chelee!

hugs,
shobha

Re: This wk things could change, I'm nervous.
 

Chelee,

I also have a pet/ct today...hoping we both get fabulous news.

I agree, the liver pain could have nothing to do with cancer - the only time I EVER had any was right after my first TDM1 dose - and I'm convinced that was screaming cancer cells

Holding good thoughts for everyone...
chris

Re: This wk things could change, I'm nervous.
 

Chelee and Chrisy,

Hope you both have good results today.

Amelia

Re: This wk things could change, I'm nervous.
 

Ditto Chrisy.
Rooting for you both!

Re: This wk things could change, I'm nervous.
 

Chelee and Chrisy, just wanted to add my prayers and good wishes for a good result for both of you:)

Re: This wk things could change, I'm nervous.
 

Today is the day and I'm thinking of you, Chelee. Expecting the best, but no matter what I know you will be out there, raising Cain and keeping the medical staff on their toes.

Re: This wk things could change, I'm nervous.
 

Chrisy, I'll be keeping good thoughts that TDM1 will continue to bring you clean scans. Which I bet it will. :)

The guy that was going to do my PET/CT came out to get me...and I told him how I wanted my Power Port accessed for this scan. I told him no one ever wants to use it. This lead up to me finding out my onc "only" ordered a PET scan this time. She has "never" done that! I wanted and expected a PET/CT especially since I recurred to so many areas. I wanted to see exactly what the Herceptin/Navelbine/Zometa was doing? Why would she not order the CT too?

I thought my onc was back from her vacation Feb. 2nd. But now I find out she won't return till Feb. 8th. No way am I waiting that long for the results.

Chelee

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Rich, Thanks for putting all the great links together...read them all. I appreciate it...thanks again!

Chelee

Re: This wk things could change, I'm nervous.
 

Dear Chelee -
Guess your onc just wants to see how "hot" you are. I hope your PET was cold as a fish! A salmon in the Yukon River.

Too bad the lady was not there to double check on the scan orders. Mistakes do get made along the chain, as many of us so well know.

We'll be waiting right along with you. BTW - great news on the tumor marker drop. Your CA27-29 is almost the same as mine!