And The Options Are...

[KDR]

All,
These are the options I am considering and would love some input. Of course, there are many, many more, but the two I am eyeing closely are:

1. Trial (Temsirolimus & Neratinib)

Pros: Crosses BBB, not chemo, good for those who consistently fail on Herceptin, cutting edge inhibitor, targeted therapy. No hair loss. Has 50% response rate, higher than TDM-1.

Cons: Weekly IV infusion, vicious diarrhea for at least 4-5 weeks (would be medicated). No ablation if on trial. Scans every six weeks. Hard on liver. Mouth sores.

2. Navelbine & Herceptin

Pros: Crosses BBB. Standard tried and true chemo...given some permanent NED status. Can ablate the single met. No hair loss, but thinning may occur.

Cons: Chemotherapy, neuropathy, maybe some constipation. Not as hard on liver.

I am having a liver biopsy on Monday to look for the mutation, in search of what changed to allow an escape window for the cancer cells. Basically research purposes, but it is prerequisite for trial as well.

I have never had surgery for breast cancer. None of my tumors have returned over the span of three years, except for the liver, which seems to be the sanctuary this cancer loves. All tumors were killed off by chemotherapy, including the original primary 3 cm in left breast.

I just went through a rigorous trial, not so gung-ho on doing another, but it may be the WAY OUT.

Your thoughts appreciated.

Listening to Pink's THE GREAT ESCAPE over and over again. Yes, I am determined to be the KING OF THE GREAT ESCAPE.

Thanks--

Karen
Who Believes In The Cure

[Ceesun]

Hi Karen, Just came off Navilbene and Hercep....was on Navelbene with Xeloda in 06. Nav does not cross the BBB as I was told and I got a little hair thinning but not so people notice. Best wishes, Ceesun

[StephN]

Do not know WHY people think Navy Beans can cross the BBB. I was never told that and was on it for over half a year on weekly basis.

What I was told was that possibly the Taxol taken with the Navelbine causes some weakening to the BBB so something can perhaps get through. Navelbine WILL cause hair thinning.

Anyway, those look like good choices to me. May you be blessed with the inner quiet and peace to feel which is best way for you.

[BonnieR]

Choices! I hate choices! I dithered around so much trying to come to terms with Herceptin. Now I cannot imagine what I was thinking about...to even hesitate for one minute!
But I do believe in "signs". Being still and really listening to things people say. Something will trigger you to know the right decision.

I must say, from your descriptions, the latter sounds more tolerable. But I am not coming from a very scientific place. Just my reaction to your descriptions. I know alot more goes in to it than that..
Keep the faith. You'll get the answer.

[Pamelamary]

Karen, I am not in a position to give advice, but hope which ever path you choose will be successful and tolerable.
Best wishes..... Pam

[Andrea Barnett Budin]

WEIGHING IN...


As Steph says, ever so astutely, May you be blessed with the inner quiet and peace to KNOW the right path.

I love the term Navy Beans (for Navelbine). It makes me smile. That's always a good sign.

I am sure your Inner Voice is already whispering to you which way to go.

To me, from down here in S. Fla., door #2 sounds like a wise choice. Easier on your poor liver. Seems like the kinder, gentler road... don't think you need the big guns for this little guy...

I believe you would be the Queen of The Great Escape to which you refer, Karen. You mentioned Pink and I thought of "our" Pink, then got it... I'm so old I remember the movie, The Great Escape, with Steve McQueen. Great movie.

Sending healing energy and a radiant white Light your way. You've already been touched by Brother ?Paul, so either path you choose will be the right one. You've got this in the bag!! Covered on all fronts.

MY LOVE,

Andi

[NEDenise]

Karen,
Sorry to be late to the party! I read this yesterday, but I wasn’t feeling so hot after the CT cocktail, and my poor brain couldn’t process the options.

But today, since you asked…here’s what I think…based not on vast medical knowledge, because I don’t have that…but rather based on experience, and concern for my friend, Karen!


If I were choosing a treatment option for ME, I’d go with Neratnib since my renegade HER2 cells all seem to want to hang out in my brain.
But, since your HER2 cells seem to prefer lounging in your liver…the BBB thing isn’t a deal breaker.
Add to that, the fact that this regimen is hard on your already stressed liver, and all the hassles and restrictions involved with being part of a trial...
and while hair loss isn’t a reason not to choose treatment … it’s not a side effect any of us look forward to.

Now the second option has the benefit of being easier on your liver…which is a good idea since you’re in this for the long haul. It leaves the option of ablation open if you choose to try it.
It’s “tried and true” which means you’ll know what to expect from day one. You were brave to blaze the TDM-1 trail for all of us. I mean that, in all sincerity…
and I know it wasn’t the walk in the park some people think it was.
But you did get 17 months of NED…so it was worth it.
IMHO though…it might just be time to try something a little less harsh…and let your body rebound for a bit.

Again…just my opinion…my knowledge about liver mets wouldn’t overflow a thimble…
but when it comes to concern for my friends…my cup runneth over!! Whatever you decide…I’m behind you 100%!!
Denise

[KDR]

Thank you so much for your input. I have learned that I have very sensitive disease. Scored at 4.4 expression. I want to cut the heads off the little darlings that make up the met, which Option 1 is probably best at. Cutting it out would be Option 2. But I have been left with such horrible neuropathy and Navelbine would add to it.

Since the liver is hangout ground, I think it's time for it to come off. No decision just yet. It's true, I think body needs a break and trial was rigorous (but with great reward).

You have all given me GREAT points of view and GREAT opinions. Thank you thank you thank you.

Karen

[Mandamoo]

I think only you know the answer Karen and your inner knowledge will guide you.
I found Navelbine very tolerable - I did have white cell issues but I was also on affinitor (would your dr consider this given bolero 3 results?) I had my hair grow back from bald while on Navelbine - and while not thick it was certainly better than nothing. I had no neuropathy either.

Good luck with your decision.
A xx

[tricia keegan]

Karen I sadly am not in a position to offer advice but wanted to send good wishes to you for a great response whatever you choose.

[SoCalGal]

First option is trial, targeted therapy and no RFA. Second option is herceptin navelbine & RFA.
Option #3--What about staying on your regime which keeps all other parts cancer free and is well tolerated and doing RFA liver only? You can always switch to herceptin and navelbine if this doesnt work. Or clinical trial then. Hope this doesn't create confusion. Also, are you taking supplements for neuropathy?

[KDR]

SoCalGal,
Good to see you!
Option 3 is that I'm on trial and if you progress, that means the drug no longer works as administered. We don't have any say in the matter; when the drug company gets the scan results, they decide. Biopsy tomorrow will tell that story. Yes, I do take supplements for neuropathy, including prescription Metanex. I didn't want to move up to the next step of Cymbalta as I like to stay as drugfree as possible. Still thinking...
What would you do if you didn't have Option 3?
Thanks, and hope you are doing well,
As always,
Karen

[Andrea Barnett Budin]

NEUROPATHY. Veryyy toooo familiar with that.

L-CARNITINE 500 (AM/PM)
CO-ENZYME Q10 150 (AM/PM)
ALPHA LIPOIC ACID 300 (AM/PM)
B-12 -- 3,000 - 5,000 EARLY IN AM

Makes a world of difference!!!!!!!!!!!!!

I also take B1, B2, B5 (pantothenic Acid), B6 50 --
and Folic Acid 400

And, Karen, you know I have a few liver detoxifiers I rely on since '98... Ask and I will list...

I don't love being in a trial where decisions are taken out of my hands and given to drug company. For whatever that's worth.

Please tell me what 4.4 expression score means.

If it's that it is highly aggressive -- CUT IT OUT! Far easier said than done. But, there's only 1...? Evict him.

Sending Love and Healing Energy your way, Karen, as always...

Andi

[SoCalGal]

I am not settled on there being only two options...sorry to stir the pot but let's see what the biopsy shows. Please post and I will think it through as much as I possibly can. Hope it goes easy...xoFlori

[KDR]

Liver biopsy done! My onco is the best! Got anesthesiologist to put me OUT! So, I'm recovering, resting, asking for this and that...lots of attention for at least one day, and my baby (almost 10) came home from her first day of camp with a big smile on her face!

No, there are not just two options. I qualify for many trials, but this one shows the best efficacy for my shituation. The other is one I always wanted to try, but with my cumulative neuropathy...mmmm, I'm not sure.

Either way, we all agree they are excellent options. I must read the consent forms to find out if there is exclusion from the trial for having had an ablation, and how often I would be scanned on Navelbine vs. The Trial (every six weeks).

Wednesday is Decision Day...

Love
Karen

[Andrea Barnett Budin]

We're all here for you, Karen. Waiting on results with you...

ANDI

[Mandamoo]

Rest well Karen. You are being prayed cleans so much love sent your way.
So glad you have a variety of options.
A xxx

[BonnieR]

I assume you intended to say "shituation"??? Brilliant new word for our vocabulary!
Keep the faith. And sense of humor!

[KDR]

Bonnie,
Yes, I meant to write it. Thank Peter Tosh!
Oopps, was I a bad girl?
Amanda and all, thank you thank you thank you. Sore today, tomorrow meet with onco. UGH, this is so confusing!
Love
Karen

[BonnieR]

You were a GOOD girl! I think we all like a little humor with our updates. Good for the spirit!

Keep the faith

[NEDenise]

OMG!
I totally missed the new word in my first read!
That is ABSOLUTELY being added to my HER2 lexicon of terms!!

It's perfect! Sums it all up in one word. Love it! I might even title my next update that way! :)

Now...on to YOU...
I'm sorry you're sore, but I'm glad you got to unconscious for the biopsy. Your onc takes good care of her star patient!

I'll be thinking of you and sending up prayers till you make your decision on Wednesday. As I said before...I have absolute confidence that you'll make the ideal choice for your current shituation. No one knows what you need...better than you do.

Rest...take those pain meds...
Sending love...
Denise

[KDR]

He he he Denise. No decision yet. Have resorted to folding papers up with Option 1 or Option 2 and having family members draw from my hand...all came up with No. 2.

Honestly, no decision yet. I am completely 50/50.

I am sore because IR went between two ribs to get that little sucker!

I'll let you know what onco and I talk about tomorrow. Meeting 1:30.

Warmly
Karen

[KsGal]

Sorry, have been MIA for a few days dealing with another illness in the family. Even though its a little late to chime in, if I had to choose between just those two, I think I would go with the first, being as it isn't true chemo and has a higher efficacy rate. If it was possible, I like Flori's idea of just ablating the one liver lesion, but I gather its not possible to stay on the regimen you have been on that have held the rest of the body in check.
Im just sending lots of positive energy your way, and hoping that you and the onc come up with a decision you are confident in. Big hugs to you..