Possible Progression/New Treatment For Liver Mets
 

Friends,
I have been on Xeloda, Tykerb and Herceptin since May of this year, and got to my lowest CEA number on it, and stayed in the normal range for most of the months taking it. My last few CEA blood tests (tumor markers) started rising by .5 each time and this last time, I went from 4.2 to 7.6, which now puts me out of normal range and solidifies the "upward trend." Bells ring over 5.0. Scans last month were stable. I have discomfort, but not pain, in the same area of liver, which has nagged me from Day 1. So, I'm set for scans on Tuesday (PET/CT) and meeting with onco on Wednesday to discuss results.

I am starting to feel very uncomfortable with my ability to knock it out. All of my other numbers and weight are great, thanks to great effort on my part with diet and exercise. I've done all I can do. If I start a new regimen, it'll be my third line of defense in just 16 months. It's starting to look bleak, to me, that is. Of course, my onco says there are many, many options out there. But my feeling is...if Tykerb and Herceptin can't knock it down, what will? Surgery is not an option.

I would love your input on questions to pose at my meeting on Wednesday. One, of course, will be a port. I don't have one and have taken at least 50 infusions via veins in my arm. If I end up on Navelbine, I will need a port. Ooooh, I got so used to the pills. Got spoiled.

Any input and suggestions appreciated.
Thanks
Karen

Re: Possible Progression/New Treatment For Liver Mets
 

Sorry to hear you are having to be restaged.
I would suggest a port if you are going to have more treatment. It really does save on the veins.

Keep us posted as to the scan results and your doctor's ideas for treatment.

Have you tried Taxotere with Herceptin?

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen
Sorry to hear about your news but there really are still a lot of options out there so please don't lose heart. My liver is seriously problematic at present so I am seeing a liver specialist tomorrow to consider some more direct treatment. Chemo embolisation and SIRTs (which is a form of radiological treatment I think has been here pioneered here in Melbourne) will be considered I hope. All the best. I am so glad to hear you are otherwise so well and good on you for doing everything in your power to remain so healthy. I remain very hopeful on your behalf, but I am thinking of you.
Trish

Re: Possible Progression/New Treatment For Liver Mets
 

Hi, Steph,
No, I haven't tried Taxotere. Any specific reason you would suggest it? (Love that AndiBB says she fought fire with fire with Taxotere--that is imprinted in my mind). I am not being restaged. Sorry about that confusion. I was diagnosed at Stage 4 (liver mets) in 2010.

I know that Navelbine is definitely going to be discussed because I'M interested in it.

Trish,
Wow, I cannot believe how many drugs you have experienced. You are amazing! Wondering, have you had discomfort in the area of the tumors since taking chemo?
Thanks, Karen

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen,

Sorry to hear about your numbers going up. Even though I was only stage IIb, I had enough treatment to warrant a port according to my onco. ( 8 rounds of chemo and a year of Herceptin) I was very happy to have the port. It was removed about 2 or 3 months after the end of Herceptin. I still have a noticeable scar, but no big deal. Port goes in easy and comes out easy. Just want you to know that I am thinking about you....west coast to east coast.

All the best,

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen -
My understanding of "restaging" is whenever you have scans and look at new treatment - not that you are at a NEW stage, unless a person was NED and then is diagnosed with some kind of recurrence.

Taxotere was not a great drug for me, but I guess I had gals like Andi in mind when I thought of it.

Navelbine was part of the knockout punch for me, so I always recommend giving it a try.

Stay in the game and even DIRECT it.

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen
I've only recently experienced discomfort and my tumours are very big at present. I think though sometimes you can get discomfort when the tumours are responding i.e. shrinking.
Keep up the good work. Go Navelbine!
Trish

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen!

Thanks for letting us know the latest. A 7.6 CEA is not horrible, but I know you feel worried. If there is progression, I would seriousily consider going on the tdm-1 trial. I think tdm-1 can get it completely and the downtown NY office is recruiting. U have a 70% chance of getting this wonder drug. If u don't get it, u go on chemo of your physician's choice.

thoughts?

Kim

Re: Possible Progression/New Treatment For Liver Mets
 

Karen,

A port is really going to make your life so much easier.

Sending you good vibes.

Re: Possible Progression/New Treatment For Liver Mets
 

Very best wishes Karen and I hope any new treatment works like magic.

Re: Possible Progression/New Treatment For Liver Mets
 

Steph is right on the "restaging". Think of it I'm terms of setting the stage for the next attack! Do not lose heart there are many options. I dont remember the criteria for th3resa trial other than it is a 3rd line trial with2/3 randomization. And there are other new approaches (Akt and mtor inhibitors etc) as well as navelbine and other chemos. So I know you're discouraged but it's way too soon to throw in the towel my dear! Navelbine has a great track record vs liver mets so could be a good choice

Easy to say I know... Especially as I head for yet another therapy myself after herceptin/xeloda bombed out for me too!

But it is part of the game. Hang in there

Re: Possible Progression/New Treatment For Liver Mets
 

Karen,
No wisdom to add...just wanted to send you love and prayers! (Yasmin too!)
You are in the best hands possible...medically...and spiritually!

Add me to the list of people who are pulling for you!
Stay strong! Keep fighting!
Denise

Re: Possible Progression/New Treatment For Liver Mets
 

Kim, we have to firm up plans for your visit in the coming weeks. I'll be in touch. MSKCC has the T-DM1 trial, but they combine it with Taxol (as does Dana Farber, as far as I know). Which downtown location in NYC are you referring to?

Denise, you are the bestest! Thanks for your well wishes. I don't even know what's going on...there was a jump, and the bell went off because I'm over 5.0 now, but the scans trump all. I have a LOT of irritation and splits in my fingers and feet. I don't know what caused the jump.

Chrisy, you continue to be a leader here and I take what my mature sisters in the business have to say.

By the way, my onco and I had a cursory conversation about new options, but of course, unless we have scans, we don't really know WHAT to talk about. She knows of some really great news things, too, we just haven't covered them yet.

Navelbine: did you lose your hair. I just grew my gold back and I don't want to cut or lose it again.

Port: if you have a port, do you also get the scan injection there? I am really done with arm IVs.

Thanks, love to all...
Karen

Re: Possible Progression/New Treatment For Liver Mets
 

Getting a port is a good idea if you are going to get more chemo and/or other things that are administered through an I. V.
I don't know what works for liver mets, but there are several labs that can take a piece or pieces of a cancerous tumor and determine which chemos might work the best?You would need a biopsy for that though. One of the labs is called Precision Therapeutics. I am no sure I am spelling the name correctly, but you can do a search for it on the internet or ask your doctor about it.
Good luck. Take care.

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen,

As far as I'm aware a Power Port can be used for nuclear scans and if you ask for Emla cream it numbs the area beforehand too, I was very glad of the port during my year on herceptin.
Good luck with your scans and whatever new regime you'll be starting!

Re: Possible Progression/New Treatment For Liver Mets
 

I had a Power Port and it was used for everything; blood draws, chemotherapy, contrast for CT scans and MRI's. It was also used for PET/CT scans. I named my port "Violet". It was a purple Power Port.

Karen, you are in my thoughts and prayers.

Re: Possible Progression/New Treatment For Liver Mets
 

Hi Karen -

The th3resa trial in Great Neck NY open for tdm1 - http://www.clinicaltrials.gov/ct2/sh...ow_locs=Y#locn

HTH,
Kim

Re: Possible Progression/New Treatment For Liver Mets
 

Hi,

I had a liver met zapped with Cyberknife in August 08, and then a spine met (L2) zapped in April of 2010. Both areas are fine now, my pet scans show normal as far as liver goes and the spine is not lighting up so I think its gone too.
CK was painless, 3 - 45 minutes treatments didn't even have a red mark on my skin. I highly recommend CK and a power port, I get Herceptin weekly due to past EF problem. Can't imagine what my arm would look like after all the IVs that I've had over the past 4 years!

Best of Luck
Pat

Re: Possible Progression/New Treatment For Liver Mets
 

Karen,
Just remember...this is just a speed bump on this crazy journey. You will feel much better when you have a new direction.

I was on Navelbine and had minimal side effects. Good news about the hair!!! Given the success of others on the site, it is definately a great candidate. Unfortunately, for me it wasn't my silver bullet...but it could be yours.

I have had both taxotere and abraxane. I DEFINATELY would go with abraxane. Although both cause hair loss, I had significantly smaller issues with nails, mouth and neuropothy. For what ever reason, the taxanes seem to work for me. Hence, we are making a run with Abraxane yet again. (this time with tykerb + herceptin)

In the 4 years I've been managing this disease so many options have come out and there are more in the pipeline that many of our sisters are trialing.

Keep the faith my dear...you have many many more options and it is doable.

Re: Possible Progression/New Treatment For Liver Mets
 

Thank you all. I am off to get my scans.

Any other oral chemos? (Would like to forego IV infusions). Here I go...


Karen