12th chemo-combo in ~10 yrs

[jml]

Hi Friends~
So 2012 brings yet another chemo-combo for me...
Metronomic Cytoxan & Methotrexate + q3wk Herceptin.

Last week's scans were not good. Not the worst I've ever had, but definitely not good. Not even stable, which was the very least I was hoping for - anything to buy more time until Pertuzumab is approved.
The PET showed 50% increase in size & activity in a spot in my R lung, middle lobe and a R supraclav node. The 2 lesions in my colon are pretty fired up, though fortunately no worsening of symptoms, Thank God. Then a scattering of a couple of nodes around my belly & GI.
I'm so sad. Just so disheartened that Halaven+Herceptin worked pretty well for the first, short 9 weeks, then since those 1st scans on October 18, things have gone awry, and just stopped working. So scary.
Fortunately I feel well and strong. And my liver looks good - which has been a troubling site in the past, even after a R Hepatectomy in 12/05 & chemo-embo w/Adriamycin in 6/10. My bone marrow/cbc's are holding steady, not neutropenic and Hgb holding ~10, which is anemic, but not so bad, as I've been as low as 6.4 in the past. And then there's the anomally of my hair growing back. As much as I hate being bald, especially for the 3rd time, I'll take it, as long as the drugs are working.
I just feel like this disease is starting to snowball, building momentum while I'm running out of options and running out of time, running towards the unfortunate inevitable.
For the past 3 years, each chemo-combo has been working for less and less time, or not at all, and the FDA just can't approve drugs fast enough to fill up my medicine cabinet. The only 2 BC drugs that I haven't been exposed to are Cytoxan &Taxotere- though I have been on Taxol - which got me to NED, once upon a time long ago - and Abraxane, which had no effect for me.
It was a pretty bleak appointment when I met with my docs & they gave me the results, but they did some searching around, offering a Phase I study that meant I would have to d/c Herceptin, which is never a good option for me. But after a little rooting around, they brought me the info about the metronomic Cytoxan/Methotrexate + q3wk Herceptin. It really is a good option - especially since I won't have to go off of Herceptin and since my body's never seen Cytoxan. And with this metronomic therapy, the Cytoxan & Methotrexate are in pill form, so I can take those at home. And from what I've read, it's not such a crazy expensive combo b/c both drugs have been around for a long time.
Now we just need for it to work. And quickly.
At the very least, I hope for this neuropathy in my fingers/toes/feet to start to resolve so that I can feel if this supraclav node is responding to the new combo.
I start this week. I'm ready.
Then there's the matter of the repeat Brain MRI next week to take a look at a questionable spot in my L lobe, only 2mm, but so hoping it's just an artifact or some kind of treatment related change as a result of the Novalis in 6/10 for 4mm spot in the same area. I can't fathom what I'll do if they tell me it is "something". I don't know how much more I can take right now.
In the midst of this, I still haven't told my Mom because I don't want to make her worry or be scared for me. I just want her to focus on my Dad. I didn't realize how much I would need for her to just know, even if there's nothing she can do.

Keeping the Faith~

Jessica
Dx-5/17/02 - 33 yo; Stage IV
L IDC w/single liver met
1) Herceptin + Navelbine x 8 weeks - No response; progress to innumerable,immeasureable liver mets
2) ISIS 2504 + Herceptin - 6 mos, partial response
3) Taxol + Herceptin x 13 weeks to NED!
NED for 1 year
9/04 - Single liver lesion recurrence
Taxol + Herceptin - on/off to beat back lesion
12/05 - R Hepatectomy; Liver NED until 2009
3/06- Local recurrence - Left breast, IDC & DCIS, but holding treatment while continue to heal from Hepatectomy.
12/06 - L mastectomy + reconstruction through 8/07
10/07 - Recurrence - supraclav nodes
4) Gemzar + Herceptin - on/off controlling nodes thru
9/08 - 7wks Rads to supraclav nodes
10/08 - Acute Renal Failure - nodes in belly stricturing kidneys. placed permanent ureteral stents
Back on Gemzar + Herceptin, but no longer responding.
5) 05/09 - Tykerb + Xeloda - partial response x 5 mos
6) 10/09 - Xeloda + Herceptin - no response, disease progresses
7) 2/10- Ixempra + Herceptin - partial response x 12 wks.
Discovered single brain lesion x 4mm & liver lesions growing while screening for TDM1 + PI3Kinase study.
6/10 - Novalis to treat brain met - SUCCESSFUL!
8) 6/10 - Chemo-embo w/Adriamyacin to de-bulk liver lesion.
9) 8/10 - Screened & Started TDM1 EAP
Immediate response, disease in belly responds dramatically.
2/11- questionable progression of lung nodules
Discontinue TDM1
10) 3/11 - PI3Kinase + Herceptin - intial good response in 1st 6 weeks but LFT's elevated.
11) 7/11-Discontinue PI3Kinase + Herceptin study;
Disease progression - 2 small lesions in colon – docs have never seen this before in BC
11) 8/11 –Start new combo Halaven+Herceptin
10/14/11 -Completed 3 cycles (9 wks)Halaven+Herceptin...
10/18/11 - Scanxiety time -1st scans since starting this regimen
Good interval response, continue on H+H!
10/25/11 – new 2mm questionable spot in brain? Due to Novalis or new disease?Re-scan in 8 weeks.
1/3/12- Disease progression; 50%increase size & SUV-R lung, middle lobe 6cm lesion. R supraclav node multiple, miscellaneous nodes in belly. Colon lesions fired up.
12)Herceptin+ metronomic Cytoxan + Methotrexate.
…on a hope & a prayer. Only chemo I haven’t been on is Taxotere.
Hurry up Pertuzumab & TDM1!
Follow Up Brain Scan on 1/18/12…pleasepleaseplease be okay. I can’t take much more.

[Sheila]

Jessica

I too find out my results this week, and I am thinking I will be taken off Gemzar. On the bright side, I was on the Metronomic chemo before Halaven, and I had a good response, although not long enough. I did not lose my hair, and I loved the freedom it gave me, only having to go in for Herceptin every 3 weeks.
I also have not had Taxotere, and that may be the next drug...I had a great response from Taxol, and have never had Abraxane (insurance denied due to price).

Although I am not anxious to lose my hair again, it seems like a small sacrifice when I look at the big picture...I truly think it gets easier each time. I am hoping my counts will hold...they have been an issue on Gemzar.

Hoping the Pertuzamab will getr released soon...I am thinking it would be a great drug for both of us, with Herceptin...I was sad that TDM-1 was not my gold bullet...I see it was a short interval for you too, but it seems to work wonders on liver involvement.

Hoping this new combo will carry you to stable until the next magic potion is available....like you, they dont make drugs fast enough for me....I seem to also be getting a shorter time out of them, and then the other tolls they take on the body!

Sad I did not go to San Antonio this year, I would have loved to have met you...we have alot in common...take care, KEEP THE FAITH, and prayers for you and success of the new combo are coming your way.

[chrisy]

Ah! Told you Sheila would chime in! Having 2 threads - you've always been an over achiever. Although you may not feel that way right now, remember you are one strong lady.

[ElaineM]

I am hoping your new "menu" will be the right recipe for you. Take good care of yourself Blessings !!

[JennyB]

Jessica I really hope you get your stable out of this cocktail. Sending positive vibes your way.
Jenny x

[CoolBreeze]

I'm hoping you get to NED again with this new drug regimen. At least you can do chemo - I'm still off it due to the c-diff. MY new one was going to be xyloda - who knows when I'll be well enough to take it?

Let's hope this new cocktail does the trick. I'll be counting on that for you - we liver resection girls have to stick together!

[bejuce]

Sorry to hear that, Jessica. You are so strong, I'm sure you'll pull through this again. We're all here cheering for you.

Love,

Marcia

[Delaney]

Jessica, really hope this new treatment works wonders for you. Looking thru your signature, its amazing what you've been thru and you are so positive all the time. You truly deserve to get to NED! Very best wishes.

[dawny]

Jessica, sending you good vibes for your new combo
Dawn

[sassy]

Jessica,

Hope this combo will work and Pertuzumab is ready soon. Any chance of talking with Genentech to see if somehow available?

Just know we are with you.