This wk things could change, I'm nervous. [Archive]

Chelee

01-24-2010, 04:45 PM

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

freyja

01-24-2010, 05:01 PM

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 ...

Rich66

01-24-2010, 05:37 PM

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

WolverineFan

01-24-2010, 06:46 PM

Chelee,

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

Yorkiegirl

01-24-2010, 07:16 PM

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.

Chelee

01-24-2010, 08:23 PM

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

Margerie

01-24-2010, 09:16 PM

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.

Paty

01-24-2010, 09:45 PM

Chelee,

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

Paty

Sherryg683

01-24-2010, 11:18 PM

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

vlcarr

01-25-2010, 12:12 AM

Chelee,

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

Vicky

Chelee

01-25-2010, 01:18 AM

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

Ellie F

01-25-2010, 05:05 AM

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

schoolteacher

01-25-2010, 07:17 AM

Chelee,

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

Amelia

loveher

01-25-2010, 07:24 AM

good luck Chelee! im thinking of you <3

schoolteacher

01-25-2010, 07:59 AM

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

Shobha

01-25-2010, 09:44 AM

Chelee,

You are in my prayers and thoughts!

hugs,
shobha

Lori R

01-25-2010, 10:24 AM

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

Ellie F

01-25-2010, 12:37 PM

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

ElaineM

01-25-2010, 03:44 PM

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.

Jackie07

01-25-2010, 08:17 PM

Chelee,

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

I'll be thinking of you.

Becky

01-25-2010, 08:59 PM

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

Rich66

01-25-2010, 11:35 PM

Will you be bringing that funky walker to your appointment?

schoolteacher

01-26-2010, 08:20 AM

Chelee,

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

Amelia

michka

01-26-2010, 02:16 PM

Chelee
Thinking of you. Hugs. Michka

Chelee

01-26-2010, 05:48 PM

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

Midwest Alice

01-26-2010, 06:11 PM

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

caya

01-26-2010, 07:29 PM

Good luck tomorrow Chelee.

all the best
caya

Patty F

01-26-2010, 08:09 PM

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

vlcarr

01-26-2010, 08:42 PM

Sending you positive vibes for a NED scan tomorrow!

Rich66

01-27-2010, 12:28 AM

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

whatz

01-27-2010, 04:59 AM

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

Shobha

01-27-2010, 09:13 AM

Adding my prayers for you, Chelee!

hugs,
shobha

chrisy

01-27-2010, 11:10 AM

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

schoolteacher

01-27-2010, 11:14 AM

Chelee and Chrisy,

Hope you both have good results today.

Amelia

whatz

01-27-2010, 11:23 AM

Ditto Chrisy.
Rooting for you both!

tricia keegan

01-28-2010, 12:36 PM

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

MJo

01-28-2010, 02:15 PM

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.

Chelee

01-28-2010, 02:31 PM

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

Chelee

01-28-2010, 04:32 PM

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

Chelee

StephN

01-28-2010, 06:26 PM

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!

chrisy

01-28-2010, 06:35 PM

Steph you are TOO FUNNY!

I had drama over my scans too...First they Pet/CT was denied by insurance, so they were going to do a Bone scan and CT instead. Then they got the study sponsor to pay for the Pet/CT, and in the end I had all of that still on the schedule!

Sure confused the heck out of the imaging center. They had my back, and noticed that it would probably kill me if they gave me 2 overlapping nuclear trace injections right on top of each other, so they rescheduled everything still all in the same day. Fortunately I was able to straighten them out and ended up getting just the Pet/CT...

I don't know if the double nuke dose would have killed me, but the double scanxiety probably would have.

Still on pins and needles of course...

Chelee

01-29-2010, 03:49 PM

Steph, Ditto what Chrisy said...got a good laugh out of that. Since my onc is on vacation I was able to get ahold of the "NP". She breezed over my PET results but said things looked "GOOD". YEAH! She said the activity that was in my rt axilla and liver area is not showing. No "hot" spots. She didn't mention my femur (bone mets) area so I asked about that and she said my onc would have to sort thur that because it did mention sclerotic changes. But she knows I had extensive surgery so it may be nothing?

I'll feel even better when I get a copy of the PET results...the NP glossed over it. But I'm still happy to hear no more activity in axilla or liver area. So this chemo combo is working.

Chrisy, You definitely win hands down in the "drama" dept. If I was you I would of had my panties in a bunch. lol That's not what I would of wanted to hear when I was there for my PET/CT. What a nightmare! I'm so glad they got it all straightened out for you. Hope you get your results soon...looking forward to more good news. So glad you weren't nuke to death. (Like we don't have enough stress without that.)

Chelee

Jackie07

01-29-2010, 04:29 PM

Chelee,

So glad to hear about your good result. 'I'm nervous' for my scan next Thursday. I really liked to change it back to a CT and get it done next Tuesday... [Could you believe that I turned down the CT offer and asked for an ultrasound instead? Thought I would get the test done sooner, turned out it's a longer wait...just can't win.]

Midwest Alice

01-29-2010, 06:01 PM

There is a lot of scanning going on here.
Chelee great news on your scans. And got your scans in my prayers Jackie and Chrisy.

Ruth

01-31-2010, 12:20 PM

Yeah Chelee - glad for some good news.
Hugs ~ Ruth

ElaineM

01-31-2010, 12:27 PM

Great news so far Chelee !! I know how you feel about getting your hands on the actual report. It is the first thing I go for after a test. I want to see the actual unedited information. I have learned alot of medical terminology that way too !!

Chelee

01-31-2010, 11:04 PM

Jackie, I have to admit...I would of thought for sure a "US" would of been much quicker to get done then a CT. We just can't win sometimes can we! There has been alot of scary news about too much radiation exposure lately...and the CT's not being set-up correctly, so I don't blame you for choosing a "US". I'll be keeping you in my thoughts & prayers for good results. Sorry you have to wait till Thrusday...waiting is so hard. Hang in there.

Chelee

Chelee

01-31-2010, 11:22 PM

Elaine, Yep...I'm not happy till my eyes physically see the PET/CT report myself. When I was first dx and my onc would tell me everything was "fine"...nothing to worry about. Much later when I started asking for "copies" of everything I found out there were many things I was not told about. So I just don't trust a thing they say till I see it and read it myself. I didn't like the way the "NP" breezed over my report so quickly on the phone. She never mentioned the other bone mets I had on my ilium and sacrum area? You said it best when you said you wanted to see the "actual unedited information". What "they" say is fine many times turns out to be a problem for me. (My femur I just had surgery on being just one example.) They said that was FINE too on my first baseline and it wasn't. argh...

Chelee