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Alimta, nope.

Results from last week's scan. You think in advance of the options and yet, when the news is delivered, you're never prepared. I thought, I can get bad news - "the tumor is shrinking and we want you to stay on Alimta" - with all the bad days associated it with it, OR I get worse news - "progression, no more Alimta, but you can try Taxotere" - and see if it does anything more than make my hair fall out, maybe make me sick, and prolong the duration of life by a few months.

The news is of the worse kind. The tumor in the liver has increased, and the lung nodules are increasing in number and size (they didn't bother to count or list the sizes). Liver tumor is now 7.0 x 8.5 x 8.6 cm and it is replacing almost the entire right lobe. Significantly, taxotere is cleared through the liver so waiting runs the risk of not being able to use this drug. But other than yesterday's crazy bug, I've felt better in the last 4 days than I've felt the entire time on Alimta. Talk about dissonance!

My oncologist is going to send the last liver biopsy (from last December, the one that keeps growing, and began while on Tarceva) out to test for ALK, just in case. I'm going to take a little break from treatment, maybe get out of town. My inclination three years ago was to run away; it is again.

I'd also like to report it is a sunny autumn day in Seattle. From the clinic we went to the park and walked the 2.4 mile loop, saw a great blue heron and some flashy flickers, and then went to lunch at Katsu Burger where some chicken nuggets with tonkatsu sauce, fries seasoned with nori, and a very good chocolate shake were sampled.

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Steph, I obviously hate this news. I understand the context in which you shared this though. I get it. Had too many cancer experiences to not get it.

Seeing blue heron, flashy flickers and some chicken nuggets with tonkatsu sauce, fries seasoned with nori, and a very good chocolate shake sampled,

sounds really good.

Hugs and love being sent to you.

MI Judy

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Oh Stephanie...I don't have words to express how I feel about you, and this news, and your strength and amazing character.

I'm going to imagine your beautiful sunny day in Seattle, picture your sweet smile and send prayers and hopes for you that the ALK come back positive and Crizotinib is what works.

I hope you keep having good-feeling days and that you get answers and a game plan soon

(((hugs)))

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I am so sorry about this latest report. I just can't help continuing to trust in your strength and resilience. Go out of town. Run away. I know you'll sample more beauty and good food where ever you go. We'll be here to support you when you get back ready to dive into the next treatment.

Judy in KW

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Hi Stephanie,

Its evening here (8.00pm) I read your post earlier this morning,I have yet to come up with something usful to say to you,other than I am so sorry to read about your feedback.I really hope that the biopsy comes back ALK positive.I was reading in team inspire about a new drug thats being developed for treating advanced lung cancer,apparently its showing brill results.Its being manufactured by Transgene and currently called TG4010 there's an additional bit added MVA-MUC1-1LZ.Maybe you can google this,read a bit more about it? In the meantime I am going to google flashy flickers,tonkatsu sauce and nori,the education I get here is just amazing.

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Thanks Eric,

TG4010 - the proposed clinical trial appears to be for use in first line chemo. I've jumped that shark. It's something they hope will help make other chemo drugs more effective, kind of like Avastin. But immunology based. It's a IIb/III trial, so that is hopeful.

Flickers are birds - the underside of their wings are red, so when they fly, they look very flashy.

Tonkatsu is a Japanese sauce for panko fried meats mainly. Panko is a crumb coating.

Nori is seaweed! This was just small dried flakes, leaving a slight fishy/salty flavor of the sea.

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  • 1 month later...

Here's my post on Grace from yesterday. It has led to some interesting discussion.

As expected, no ALK translocation. So no Xalkori.

New oncologist is youthful, appeared to be up to date with my case, and personable. Discussed current issues, offered compazine (prochlorperazine) for the eating issues since I described it more as nausea than reflux. Happens prior to eating. I guess it can help if it is anxiety as much as anything biological. As always, I hate the idea of it and the potential for side effects. We'll see.

We discussed Taxotere (Docetaxel) without great enthusiasm on my part. Also, touched on Navelbine (Vinorelbine). And then, "palliative care or a consult with the hospice team". You all know I've been inclined to stop chemo now for some time. I feel better off it that on it. But siting there and trying to make this decision? This just isn't something anyone should have to do.

I can schedule another visit with her in two months, talk to social workers, or schedule chemo. All we did do was go get lunch. Fried calamari and chips! I don't know why crunchy fried foods appeal to me right now - that hasn't been my history. Full belly, sunshine has burned through the morning fog. What to do, what to do?

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Stephanie, I know how tough this is for you. I'm thinking I'm on my way to the max time I've gotten on other chemo. Been thinking of asking for the ALK test myself.

You know everyone is different but Stan just said yesterday that I've done as well on Taxotere than any other chemo. Alimta is a close second. It just took me too long to get the bowel thing with it resolved. Only really difficult side-effect with Taxotere is the hair and I'm reconcilling with that now. I'm thin but not bare-head thin and wear a hat when I'm out. The wind does not help. Shows how really thin I am.

You'll make a decision or no decision. Whatever feels right for you. I know if I ever get off chemo again, it will be hard to go back on. I remember those terrific 6 mos off chemo after a remission. But if my cancer was still active...well, I don't know.

Judy in KW

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Steph, I get it too. Hard decisions need to be made. My Mom decided that chemo was not an option. She had WBR for brain mets and that was it. Many of my friends took the chemo options to the limit. It's a personal decision. One that takes a personal inventory.

If I can help in any way, do email me. My heart goes out to you. My prayers envelop you. Sending a hug and a prayer.

Judy in MI

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Sorry you're faced with this, Stephanie. Watch the prochlorperazine. All the while the hospital was thinking it was IV morphine making me sick, dizzy, and out of it after my surgery, it turned out to be the prochlorperazine.

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I am keeping you so close in my thoughts and prayers....I can't know what making a decision like this is like...but whatever you do - if you do it for you, it will be the right decision.

I wish I were closer....

Many gentle hugs,

K

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Stephanie - I am sorry that you are having to make this decision. Quality of life means different things to different people, and I believe what it means to us changes even as we go through this journey. I know that whatever decision you make will be the right one for you.

Keeping you in my thoughts.

Diane

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