Update - progression confirmed; the last shoe drops

[chrisy]

Well goils (and boys),

I've hesitated to post - and will just HATE updating my history....but my June 1 Pet/CT confimed I have at least one very lively and growing liver met and a node that is lit up like a christmas tree. So I'm officially "off" the T-DM1 study after 54 treatments - over 3 years. A fabulously long ride...but of course still not long enough. Greedy little girls, aren't we?

So, I'm in the process of choosing a new horse to ride - and fortunately there are several options.

As the most aggressive option, I'm screening for a small study with Taxol (bye bye hair), Herceptin, and MK2206 which is an AKT inhibitor. The hope is (if I can qualify - I'm dancing close to the edge of several exclusion criteria) that would shrink things down and then we would go after the node (and maybe the met) locally. It is the SAME old dumb tumor every time, maybe it just needs the horcrux treatment.

Next choices would be Herceptin/Xeloda or Herceptin/Tykerb, but as we're looking for shrinkage (where's George Costanza when you need him?), the taxol mix might be better. And as the others are all FDA approved, these would be options anytime, not so with the new study drug.

Taxol/Carbo/Herceptin slapped my liver mets into remission back in 2004, maybe it can repeat the performance, along with the AKTI. I saw some interesting info on the AKTI's in San Antonio - yet another piece of the puzzle perhaps.

So yes, I am majorly bummed about the TDM1 as you can imagine. BUT I still think it is a fabulous drug and would continue to encourage people to fight like hell to get it.

So...calling all prayer warriors, propeller heads, any ideas or good thoughts are welcomed.

[Pam P]

Chrisy - I've been wondering about you & was glad to see your update, but not the fact that the progression was confirmed. You've outlined several good options for the next attack. Whichever one is used better bomb that darn liver met once and for all. I'm no prop head but will be sending prayers. Pam

[Mary Jo]

Hi Chrisy,

Praying for you. Asking God to make it clear....what should the next treatment round be. Praying peace, strength and healing. Love ya sister.

Mary Jo

[CoolBreeze]

Have you ever discussed radiofrequencey ablation for your liver mets? With only one met it seems like a very viable treatment for you but maybe there is a reason you can't have it?

[Kim in DC]

I was just thinking about you. If you have plenty of options then use them! I was reading Dr. Block's book just before checking on my her2 family. There is lots of hope!

[Sandra in GA]

Chris,
I will be praying for you ~ for guidance in chosing the best treatment option, for peace, for healing, and for your continued optomistic attitude ~ you are an inspiration to me!
Love and Hugs,
Sandra

[flynny]

Sending you lots and lots of prayers! You deserve it!

[sassy]

Chrisy,

Aw Shoot! Just glad there are options--prayers your way for guidance and strength.

[ElaineM]

I am sorry to hear about the progression. However I need to tell you that whatever you decide to do will be the right choice for you. You have been very good at picking the right treatments for whatever is going on.
I have my fingers crossed for you too !!!!!!!!

[Rich66]

I have mixed feelings about taxanes. But some clearly have great results with them...as you certainly have. If you end up considering a Taxol including approach outside the trial, maybe Abraxane would have less side effects. But I think there is some suggestion that Abraxane can work when Taxol doesn't..so..whether to use it before giving taxol a chance..

[StephN]

This news is hardly the "LAST shoe." I am sure you have a whole closet of shoes left to drop!

But, drat, your cruise control has gone on the fritz.

That trial is intriguing. Keep us informed of your progress in entering that treatment. Often there is a new way to target that has shown great effectiveness for you, so why not go for it?

Cyber hugs and wishes for this choice to be an easy one.

[Elizabethtx]

Sending up prayers for your latest decisions! You have been inspirational to so many others and it is our turn to hold you up and walk with you! Hugs!

[Rich66]

Yes..may you be the Imelda Marcos of shoe drops ;)

[Chelee]

Chrisy, Darn it all...I could just kick something. At least you do have lots of good options to consider--the hardest part is choosing which trt to go with--or in your case which horse you want to ride? I don't think you can go wrong with any of them--you just want the one that will kick the crap out of those buggers for inturrupting your great run with T-DM1. However I know you will get back to NED once again! Have you thought about asking Dr. Slamon his opinion? I will be watching to see what you come up with? I just know that node and liver met don't stand a chance with you coming after it. Sending lots of positive thoughts and good energy your way.

Chelee

[Trish]

Sorry about the confirmed progression. My liver mets also progressed when I dropped the Abraxane of of my mix-have just added it back and am hoping that will get me back to decreasing rather than increasing met size. I need both Herceptin AND Tykerb WITH chemo it seems to achieve reduction . On another cite Abraxane/Gemcitabine/Herceptin has been suggested for rapidly progressing lung mets.Lots of shoes left-all the best with choosing the next approach. We are a work in progress....
Trish

[pibikay]

Sorry to learn about the progression.Will be praying for you

[Becky]

Rats Chrisy. One pesky met. I know you will do well on whatever you choose to do next. Love and hugs to you.

[krisvell]

Chrisy,
You've got my payers and support. You have a lot of options available.
I pray for shrinkage and then vanishing!
Hugs and prayers,
Kris......

[caya]

Chrisy,

Sorry to hear about the recurrence of the pesky liver met and node. Sounds like there are lots of options, and I am praying that one of them works for you ASAP.

all the best
caya

[ammebarb]

Chrisy, sending my prayers too. Hope you have a plan soon that will finish off that met and node!

[Mary Anne in TX]

Hi Chris,
That news is the pits. Your options do sound good. It is the first one that I have been reading about. It surely makes good sense.
You've got my prayers for wisdom and quick success.
much luv, ma

[michka]

Hi Chrisy. I am so sorry you cannot continue with TDM1. Is the liver met always the same one and is it in a reachable place? If you can have it taken out by RFA or celio would they take you back on TDM1? I figure you already went through all this so forgive my stupid questions but my dream is to see you back on TDM1 again. Hugs. Michka

[KDR]

Hi, Chrisy,
News of progression is always a let down, but it passes once you realize you ARE a soldier and you will bring out new guns! Steph took the words right out my mouth...you've got a closet full of options. I also had progression on the liver shortly after NED, and it was traumatic, but on the new regimen, Tykerb/Xeloda/Herceptin, I am nearly normal again after the first 1.5 cycles. You are going to be fine, I know it. Look at your history! You'll find the right combo again and it'll take for a nice, long ride...maybe into The Land of The Cure for HER2 or one of these great vaccines.
Love,
Karen

[schoolteacher]

Sending my prayers also.

Amelia

[hutchibk]

So, crap on a crapstick. I think the universe is telling us it's time for you to chart NEW uncharted territory, as you are our pied piper...

Rich, you are correct about Abraxane picking up when Taxol fails. I know many Oncs who really really like it. Also, CT, have any docs mentioned Navelbine? I know it's supposed to be a good one for liver mets... (it's one that is still in our back pocket... too)

And, hows about everolimus (Afinitor) - it sounds interesting...
http://www.breastcancer.org/treatment/targeted_therapies/new_research/20100607b.jsp

[Joan M]

Chris,

You did get a long ride out of T-DM1, which is great. Now on to getting rid of that pesky met that keeps coming back in the same place, and now a node too.

I'm sure you'll come up with a good plan.

Joan

[SoCalGal]

"Weekly Taxol/Carboplatin/Herceptin , complete response!"
I would consider trying it again. Did you have the tumor assay test? Maybe called Oncogene? Is that a possibility with the node to provide more/current tumor sensitivity info. xo xo Flori

[Delaney]

Chrisy, sorry to read of this development but am sure you will find a way to knock that node into submission.
Thinking of you.

[Lori R]

Chrisy,
Glad to hear from you....frustrated by the news that a liver met is indeed lurking.
Your medical team seems to be so open to different options, both old and new. (oh...and so are you) I agree with Brenda that you had good luck being on the leading edge with TDM-1, maybe they can select anotherrleading edge drug combo that will work wonders.

It must not seem this way, but it is good news that you have a met in a single location.

If you just need shrinkage for localized treatment, please speak to the Drs. about Abraxane. It was my 2nd treatment and was very tolerable. Hardly knew I was on chemo.

Localized treatment...wish I had more time to wager an opinion. Cryosurgery was freaky but very very doable. Think root canal. Up and about the next day. Lasted a year or so. Then there is the "gold standard", the resection. The good thing about an open resection is that the surgeon can actually see what is happening. They identified 2 nodes that the PET didn't reflect. Feels good to just get the cancer OUT...gone.

So many options my dear, I will be anxious to hear which horse you choose.

We will be here cheering you on!!

Lots of fighting power coming headed your way....Lori

[Emelie B]

So sorry to hear the news, but what a great run you have had brave lady. Like the other wise women have said, there are options out there and I am confident you and your team will find the right one for you.
I hope you can find some peace and move forward on your journey.
Please let us know what you eventually decide on, and there are lots of hugs coming your way.
Emelie

[PinkGirl]

Well, Chris Y, I don't have any medical advice ... if I ever give
you any please ignore it.

I'm thinking about you and keeping all my fingers and toes crossed.
Sounds like there's lots of stuff out there for you to try. I know
you will beat this back ... way back ... I know you will. Keep the
faith woman ..

[Laurel]

Chrissy,

You know I do not have any knowledge on things, but I do want to share that I LOVED your "horcrux" treatment and George Constanza shrinkage lines! You missed your calling at stand up, Girlfriend. Witty in the face of treatment! How very like you, Chrissy.

Well, you already know I am truly bummed about your run on TDM-1 coming to a close. It was a good, long run, but as you said, never long enough. This newest trial does sound intriguing except for the dratted Taxol. I truly hated that crap. However if it does the trick, it is worth the suffering. I am hoping you will qualify and then at least you have the option to exercise if you wish.

Best and prayers.

[Debbie L.]

Chrisy,

I know you'll be on top of these decisions about the trial vs. the approved choices. I'm adding my good thoughts on that to all the rest.

But mostly, I'm surprised to see you (of all people) label this the "last shoe". Do you really feel that to be true? It's okay if you do, and if so -- can you tell us about that?

Or if not, (Imelda), can you tell us about that, too?

Love and good thoughts and prayers,

Debbie Laxague

[Jackie07]

Chris,

Can you get a biopsy to get the tumor in the liver tested? According
to the abstract listed below, there are quite a few cases in which the ER, PR, and Her2 status changed in liver metastasis.

Should liver metastases of breast cancer be biopsied to improve treatment choice? (http://www.ncbi.nlm.nih.gov/pubmed/21343379)

Curigliano G, Bagnardi V, Viale G, Fumagalli L, Rotmensz N, Aurilio G, Locatelli M, Pruneri G, Giudici S, Bellomi M, Della Vigna P, Monfardini L, Orsi F, Nolè F, Munzone E, Goldhirsch A.
Ann Oncol. 2011 Feb 22. [Epub ahead of print]

^^
Shall we put out a 'wanted' notice for 'George'? Love that 'shrinkage' reference.

[hutchibk]

Hey Debbie, I will try and clarify for Chris, if I may be so bold.

I believe what she meant by "last shoe" was specific only to her involvement in the TDM1 trial. Little by little over the last couple of months her trial folks and doctor were trying to determine if she was truly having progression on TDM1. Slowly but surely it was revealed that what they were seeing was progression, not just a glitch of some sort... so the 'last shoe' was the final determination by all involved to throw in the towel on TDM1, that it had stopped working for her, and it was time to look elsewhere... (as well cancel travel plans for the summer, etc etc etc...)

I know she is bummed, but she is not down and out. She's on the confusing path to the next thing in the toolbox, but whether it's going to be a hammer, a wrench or a screwdriver is the question. Maybe all three!

[Debbie L.]

Thanks, Brenda! The last T-DM1 shoe makes more sense. When Rich brought up Imelda, I wasn't sure.

So, while we're on T-DM1, has anyone heard of plans or progress to develop more of the same type of drug? There's nothing special about maytansine (sp?), right? Can't they use this same kind of technology to deliver other chemos, with the same efficacy and low side effect profile? Could there be, for example a T-Carbo?

Debbie

[Becky]

Chrisy

Perhaps the met turned hormone positive and is screaming out for tamoxifen or something - just a thought.

On what chemo drug that is linked to TMD1 - it may have to do what they can chemically link to Herceptin without destroying Herceptin's properties (so that it rushes to Her2 receptors). It may also be catalyst dependent (to keep the chemical reaction's temperature low also to protect the Herceptin). I am sure the biochemists are thinking but the bonds they would have to use to join the 2 molecules would have to work out with each other and the chemical reaction has to be right to maintain the properties of each component (Herceptin to the Her2 receptor and that the chemo part also acts as chemo).

[KDR]

http://www.newsday.com/news/health/fda-approves-test-that-spots-her2-positive-breast-cancers-1.2956624

Just wanted to add this link, which was in New York's Newsday on 14 June. The FDA has approved a new test to identify HER-2 cancer, thereby eliminating lost time on a regimen if Herceptin will NOT work on a patient.
Karen

[tricia keegan]

Chrisy my internet connection has been troublesome all week so just getting to see your post now and was sorry to read the news.

However it's just one met and I know you'll handle it and agree with Steph, you have many more shoe's to drop !!!! xx

[chrisy]

Brenda, you spoke very well for me. I invite you to speak for me whenever you want!!!!!

Yes, the last shoe reference was to the long road to determining progression on TDM1, which actually started in December!

Sorry I have not posted any responses to anyone, I have been travelling around all week and only have my iphone which has it's own ideas about how to respond to keystrokes!

I am, as Brenda said, in the process of screening for this new study, one criteria I can check off is the LVEF which came back a nice strong 66. A few of the other criteria are dicey, and I'm waiting to hear back re the screening blood labs I had drawn yesterday.

I am planning to have a new liver biopsy - I think it was Becky it the nail on the head, my Dr. is wondering if maybe now there is some ER/PR positivity.

On the other point, research on linking a different chemo to herceptin, there is research ongoing on that question. I do remember speaking with the genentech researcher who developed TDM1 who told me they had experimented with many many different agents during TDM1 development - like everything else, it is always more complicated than we'd like.

Now that I am back on a real computer, I'll reread all the comments - lots of great things to think about, thank you!

[laureen]

Dang it, I am so sorry to see this. Bummer, poopy, crap, what other word describes this. Lol. I am sure you have your own set of words. Sending prayers and good light your way.

[Sheila]

Chris....you know how I feel about all of this...your next miracle is right around the corner.....you are smart and tough, the cancer doesnt stand a chance!
BIG HUGS AND MUCH LOVE

[Ceesun]

Chrissy, you have done so well, I know there will be a good alternative for you. Hang in there, friend.

[chrisy]

Laureen, I know the words poopy and crap are top of mind for you right now! Funny how useful those words can be relative to all sorts of things!

I've been on TDM1 autopilot so long I'm really finding it hard to get my head around the fact that I am having to change horses - with a different plan and all the things that that brings. But so it is.

Smiling at the thought of your new baby:)

[hutchibk]

Exactly how I felt about changing from the Tykerb horse, Chris... exactly. I was on Tykerb for 4 years, 18 months w/xeloda and another 30 months w/Herceptin.

[Mary L]

Chris, so sorry to hear this but I know you will find the right treatment plan to beat this. Sending prayers your way. Mary L

[lkc Gumby]

Chrissy, Sorry to hear this, but onemet is doable. I am sure you'll be kickin it to the curb soon.

[suzan w]

sheeeeeit...should I send you a new pair of shoes??? Green ones???!!!

[chrisy]

Suzan - ahh yes! The green shoes! Proof that you have in fact been here those six years!

Maybe I'll just go with bare feet except during chemo. Then it will be cozy socks. Can't hear than drop:)

But I will still be able to take that one step at a time!

[Jean]

Chrisy,
#*(&@! sorry to hear your news.
Of course prayers are coming your way....strong huge ones. I am sure you will make the very best new treatment choice - you are always ahead of the curve.

Big hugs,
Jean

[Carol Carlson]

wondered if you know my niece, Cathy Daniels from New Boston. N.H. ?? Hope you are doing well.
Carol Carlson

[Laurel]

Just wanted to stop by and say I am thinking of you, Kid.

[mamacze]

Chrisy,
Just checking in after vaca with the kids ... such kick-in-the-gut news....especially after a good long run of not having to think about it...now you have to get back in the saddle.
So back in the saddle you are. Please stay with us and let us know if a biopsy is in order...Becky may be on to something...it is such a pesky mets it makes you wonder if it changed it's stripes to an er/pr flavor. Also, you may have mentioned it earlier; but did you rule out rfa? Hold on tight to the reins....we are rootin for another good long ride for you...
Love Kim from CT

[Barbara2]

Adding my "ditto" to all of the above. Many thoughts and prayers are with you and confident that something will be found that will once again be a good fighter for you.
Hugs and prayers...

[Sherryg683]

You are in my prayers, I am so sorry to hear about the progression. sherry