What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

What now?
I'm so dejected and scared right now.
This is my 10th recurrence, 8yrs Stage IV this May.
My PET scans show the Herceptin/Tykerb that I've been for the past 12 weeks didn't work.
I meet with my doc in the morning, but just spoke with her on the phone and things look "a little worse" - meaning bigger, more active.

This time last year we were managing supraclav nodes & sternal nodes with Herceptin+Gemzar. After a short 8 week reprieve, PET scans showed the sternal nodes were back and we switched to Tykerb+ Xeloda.
There was interval response/shrinking after 8 weeks, but then when we scanned 15 weeks later, major progression - 2 spots in the L lobe of liver, and multiple nodes in my belly, compressing kidneys, ureters & colon, causing me to have stents placed in my ureters to keep kidneys from choking.I had a resection of the R lobe in '05 & that side is still clean.

I'm tired, so tired of fighting so hard, without time to rest in between battles. It's getting harder. And I've never physically "felt" my disease...And have truly enjoyed a very active lifestyle throughout the majority of this bumpy journey.
But now I have constant discomfort from the stents and can feel the constant congestion around my bowels.
My life's already become more limited and I'm so afraid of what's to come down the road.
I'm even more frightened now than in the beginning when my medicine cabinet was full.

Maybe after my doc visit I'll feel more optimistic.
But our list of options is so much shorter now.
Avastin's not an option because of my kidneys.
What's left?
Where is that TDM1?

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Jml, you hang in there, and please know that we're with you. I wish I could give you a big hug right now. I'm sorry I can't help with treatment options available, but you know your sisters can. Please accept my thoughts and prayers. Love, Bill

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Jml,

Are you not able to teach pilates now?

It is very depressing when we are not able to do what we used to enjoy. I have moved from a track/basketball athlete down to a person who has to watch carefully on her balance ['fell out' of the passenger side of our car one time (a year ago?) while getting out.] With my left-side weakness and swollen ankle, I can't walk but for 5-10 minutes at a time.

It has got to a point that I don't enjoy reading any more ['used to be' a librarian.]

And composing a post has taken so much time that I got 'timed-out' frequently...

But I always remember one of the sentences I had translated from Fr. Bob's lectures - "If you can't move any part of your body, then find something interesting to 'think' about."

At least you seem to have a good doctor who's on your side.

[I just got off the phone with my family doctor who's been encouraging me to change my 'primary' physician since last fall.]

Take it easy and let us know how things are going with you.

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Jml,

I am sorry you are experiencing physical discomfort, and mental anguish. I so wish the TDM1 was available to all. Hoping someone on this board will have suggestions for you. You have fought such an amazing battle and are such a fierce warrior. Stay in the fray until reinforcements arrive! Prayers for something for the medicine chest!

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Dear Janelle -
You have my deep empathy with your status. You have been going at it hard, but the cancer seems to keep a slight edge.

There is no "signature" so I can't recall if you had Navelbine in the past. Hard to think what may work without the "list" of past treatments.
And you are hormone neg?

T-DM1 is coming at the end of the year, and I don't believe they are open for compassionate use yet. Maybe Joe knows who you could speak with on that.

Hang tough, sister!

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

I've never understood why one can't repeat a treatment that helped several years back? Perhaps your doc will know which to revisit, in conjunction with the Herceptin/Tykerb. There are many trials and many promising new things. I'm sorry I don't have specific info to offer, but see what your doc says. Please update when you've had your visit. In the meantime know we are there with you.
These are the moments it's the hardest to keep your edge. Stay strong,
Flori

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Thinking of you and hoping your appointment with you onc. today is going to give you hope with a new treatment strategy that will shrink this new slight progression and get you feeling better too.

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

Thank you everyone for you encouraging words and infinite kindness.I've tried to create a "signature" for my posts here, but my tx history is so long I had a hard time fitting everything in.

Here's my hx:
Dx May 2002 - IDC L breast, no DCIS, 12+/12+ nodes, lumpectomy, but single liver lesion
Stage IV.
Her2+++, er-/pr-
Tx1 -Navelbine + Herceptin x 8 wks = failed/progression
Tx2 -Taxol + study drug x 6 mos = gradual response, liver cleaning up, but still residual disease.
Tx3 -Taxol + Herceptin x 13 weeks= NED x 1yr! weekly Herceptin
Sept 04 -1st Recurrence - single lesion in liver back
Tx4 -resume Taxol+Herceptin x 4 weeks to prep for RFA; but lesion resolved. d/c Taxol Herceptin x 8 weeks.
2nd Recurr - liver lesion back.RFA to lesion; but incomplete.
Tx5 - Abraxane+Herceptin x 9 weeks -dosing mistake; failed, No response
Tx6-Taxol+Carbo+Herceptin= complete interval response-NED ; dc TCH x 8 wks
3rd Recurr - liver lesion back
Tx7 -resume Taxol + Herceptin = complete interval response-NED; dc TH x 8 weeks
4th Recurr - liver lesion back - growing bigger faster in this interval
November 2005 - R lobe liver resection.
Feb 2006 - 5th Recurr - 1cm lesion in L breast, pervasive DCIS
March 2006 - remove lesion, watch DCIS while still healing from liver resection.
December 2006 - mastectomy with reconstruction
March 07-Aug 07 - reconstruction
October '07 - 6th Recurr - 2 supraclav nodes
Tx8- Gemzar + Herceptin x 12 weeks - complete resolution NED
Sept '08 -7th Recurr - supraclav nodes again only 6 mos later.
Tx9 - rads x 7wks; complete resolution, NED
Oct '08 -Acute renal failure; ICU/hosp x 1wk; stents in ureters
Nov'08- 8th Recurr - sternal nodes
Tx10 -resume Gemzar Herceptin x 12 weeks; complete resolution, NED
9th Recurr - sternal nodes again, only 8 wks after dc Gemzar Herceptin
Tx11 - switch regimen to Tykerb Xeloda; interval resposne after 8 weeks.
Nov '09-10th Recurr - failed Tykerb/Xeloda. significant progression - 2 lesions in L lobe of liver, disease in nodes in belly compression kidneys, bowel ureters. stents again.
Tx12-Tykerb Herceptin x 12wks; CTC = 0 but
Feb 16 - PET scan - disease a little bigger, a increased SUV.
Failed Tykerb Herceptin.

Now what?
Not eligible for current TDM1 trials; waiting for new trials to open.
Resume Taxol Herceptin while waiting for TDM1?

Strongly considering resuming Taxol Herceptin - will lose hair for 4th time and hope that this will hold things if not clean things up until TDM1 is available.

Heading to doc now.
Will keep you posted.

Thank you again & God bless~

Jessica

Re: What now?Failed Tykerb/Xeloda. Now Failed Tykerb/Herceptin
 

just wanted to say i'm thinking of you and adding some prayers for you!