ts Posted October 26, 2011 Share Posted October 26, 2011 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. Quote Link to comment Share on other sites More sharing options...
Joppette Posted October 26, 2011 Share Posted October 26, 2011 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 Quote Link to comment Share on other sites More sharing options...
jaminkw Posted October 26, 2011 Share Posted October 26, 2011 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 Quote Link to comment Share on other sites More sharing options...
Alan Posted October 26, 2011 Share Posted October 26, 2011 I hate this news for you too. I know I haven't been around here very long, but I understand. That running away for a while sounds good. Enjoy the beauty and get back in the fight when you're ready. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 26, 2011 Share Posted October 26, 2011 Run for a while, eat, drink and be merry. But Stephanie, even though I only know you through this site, I think this is just another chapter and the book is far from over. Stay the course. Quote Link to comment Share on other sites More sharing options...
eric byrne Posted October 26, 2011 Share Posted October 26, 2011 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. Quote Link to comment Share on other sites More sharing options...
ts Posted October 26, 2011 Author Share Posted October 26, 2011 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. Quote Link to comment Share on other sites More sharing options...
dianew Posted October 26, 2011 Share Posted October 26, 2011 I am sooo sorry for this news. I am hoping and praying the ALK is positive. In the meantime, enjoy the beautiful area you live in, the great food, and the autumn sun. Quote Link to comment Share on other sites More sharing options...
Sara Posted October 26, 2011 Share Posted October 26, 2011 Sorry to read this news, hope your ALK results come back positive. Hope you can take some time for yourself and enjoy some Seattle weather. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted October 27, 2011 Share Posted October 27, 2011 So sorry to read this, Stephanie. Here's hoping the ALK is positive. Quote Link to comment Share on other sites More sharing options...
ts Posted December 10, 2011 Author Share Posted December 10, 2011 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? Quote Link to comment Share on other sites More sharing options...
chloesmom Posted December 11, 2011 Share Posted December 11, 2011 Stephanie, I am so sorry that you are faced with all of this-I know you will do the right thing for you My thoughts are with you through this-- Cindy Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 11, 2011 Share Posted December 11, 2011 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 Quote Link to comment Share on other sites More sharing options...
Joppette Posted December 12, 2011 Share Posted December 12, 2011 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 Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted December 12, 2011 Share Posted December 12, 2011 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. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted December 12, 2011 Share Posted December 12, 2011 Stephanie, I can't even begin to understand how you can make a decision like this. Whatever you do, I am sure will be right for you and your decision should only be based on what you feel is the best choice for you. Quote Link to comment Share on other sites More sharing options...
dianew Posted December 12, 2011 Share Posted December 12, 2011 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 Quote Link to comment Share on other sites More sharing options...
Treebywater Posted December 14, 2011 Share Posted December 14, 2011 Stephanie--It was such an honor to see you at the Seattle walk and now you're having to make this awful decision. Just know I'm another one praying for you and supporting you right now. Quote Link to comment Share on other sites More sharing options...
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