Tanner Posted March 22, 2007 Share Posted March 22, 2007 Hi. They finally let Karen out of the hospital on Tues. Hooray! Unfortunately they think that the pneumonia wasn't pneumonia. Based on the CT scan, they think her lung caner is growing. She has been on Tarceva for 5 weeks and they wanna give it another 4-6 weeks and do another CT scan to see. If the Tarceva isn't working, what then? What else is out there to try? Her oncologist made it sound like there is nothing else to do but call Hospice. We have 2 daughters, Monica 5 1/2 and Andi 3. None of us is ready to call it quits. Karen has a bunch of fight in her still. Thanks Tanner Quote Link to comment Share on other sites More sharing options...
wiesia Posted March 22, 2007 Share Posted March 22, 2007 It looks like Karen had only one type of chemo (besides Tarceva). There are plenty more. The usual second line chemos are: taxotere, alimta, navelbine. The first two are stronger; the last one has minimal side effects. Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 22, 2007 Share Posted March 22, 2007 If the lung cancer is growing, I am assuming that the Tarceva is not working. I'm not sold on waiting another 4-6 weeks, ya know? I'd question that. Kasey Quote Link to comment Share on other sites More sharing options...
wendyr Posted March 22, 2007 Share Posted March 22, 2007 Hi Tanner: First I'm glad you finally sprung Karen from the hospital. I'm sure everyone feels better about that. Don't be too quick to write off Tarceva. It's true that it doesn't work for everyone but there are other chemos out there. Did she ever go on the Avastin or was that ruled out because of the brain? As you read the profiles you'll see lots of other chemos. Some doctors have to try a few different combinations before they hit on the right one, and there are always clinical trials. I understand this is a scary time for you all and my thoughts and prayers are with you. Good Luck & God Bless Quote Link to comment Share on other sites More sharing options...
raneyf Posted March 22, 2007 Share Posted March 22, 2007 I'm with Kasey - unless the growth is very slight, I'd move on sooner than later. Can she get Avastin since her brain has been treated. I'd be inclined to try something with that. Maybe even the Tarceve, if you wait, with that. I'm so sorry it doesn't appear to be working. Please stay hopefully and encourage her to keep fighting. Good Luck, Raney Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 22, 2007 Share Posted March 22, 2007 Ok there should be more options I would think. Carboplatin taxotere Cisplatin Etoposide Navelbine Gemzar Alimtas Avastin Cisplatin? taxol? Sending Prayers For Family, Never Give up!! Quote Link to comment Share on other sites More sharing options...
Ry Posted March 22, 2007 Share Posted March 22, 2007 My husband was stable on Tarceva a long time, as soon as he had very minimal growth he was taken off and switched to other chemo (see the profile). He is now on Avastin-- I can't say enough good things about it - it's an easy infusion with no side effects to speak of and for the first time in years he has had some shrinkage. Ask about Avastin. She has many options open to her -- maybe it is time to find a doctor that is more aggressive. Your girls need their mom. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted March 22, 2007 Share Posted March 22, 2007 Definitely bark up some trees and see if they can get another treatment plan in place. I so agree with Ry--those girls need their Mommy (and you need her too). Praying that you'll find the plan you need. Quote Link to comment Share on other sites More sharing options...
spicysashimi Posted March 22, 2007 Share Posted March 22, 2007 Tanner, Hospice seems premature. She's young and presumably has a good performance status, why won't they go to second-line chemo? I also think you should give the tarceva another few weeks, unless you think she is danger of declining rapidly. sending my best, aaron Quote Link to comment Share on other sites More sharing options...
Tanner Posted March 22, 2007 Author Share Posted March 22, 2007 Karen is on a clinical trial for Tarceva and Avastin. But the Avastin could be a placebo. We don't know. The Tarceva is the second line drug that she is on. She orginally did 6 rounds of Carbo/Taxol. We are gonna give the Tarceva another 4-6 weeks to see if it is working. Or doc told us that growth doesn't stop overnight. Sometimes it takes a few months to stop and see shrinkage. This is a very frightening time for us. We were told that 3rd line stuff wasn't always helpful. And that we should consider Karen's quality of life before embarking on 3rd line. But ya'll make it sound like there is more out there. I hope so. Keep the suggestions coming! It has been so helpful for me. Quote Link to comment Share on other sites More sharing options...
raneyf Posted March 22, 2007 Share Posted March 22, 2007 With the avastin I notice a lot of mucous production - I'm always blowing my nose. I also am getting slight nose bleeds, especially when I blow. That might help you ascertain if she's getting a placebo. Is there a mechanism in the trial for getting the real drug if she's getting the placebo and progressing or not stabilizing? I don't know about 3rd line drugs not being as effective, but I know that I'll be using them when I need them. Quote Link to comment Share on other sites More sharing options...
Treebywater Posted March 22, 2007 Share Posted March 22, 2007 The quality of life discussion *is* important, but it sure sounds like your wife and you are ready to fight. I don't know a lot about the 3rd, 4th line issues.... BUT I do know that we have had members here who have gone through several lines (3, 4, 5) of chemo before finding the one that WORKED. I do think there still may be some options, and I guess I'm puzzled by your wife's doctors bringing out the 'quality of life' line or reasoning at this point. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 22, 2007 Share Posted March 22, 2007 There are a lot of options yet to try. Your wife's age and otherwise relative good health all count heavily in her favor. I'm sorry to hear she developed resistance to carbo/tax. Where you don't know if she's getting placebo in the trial, maybe it's time to rethink that. You'll feel better if you talk to your onc. about plan b and plan c. My onc had in mind already what he'd do if this therapy failed (which it didn't). There's an organization in California called KidsKonnected which, in addition to local stuff for kids, will also send a book about cancer suitable for kids, a card from another child, and a teddy bear - at least that's what my kids got from them, and you can keep posted on what else they're up to. Chin up, there's a lot of options to try yet. We're here, too. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
recce101 Posted March 22, 2007 Share Posted March 22, 2007 [ raneyf ] With the avastin I notice a lot of mucous production - I'm always blowing my nose. I also am getting slight nose bleeds, especially when I blow. That might help you ascertain if she's getting a placebo. That sounds reasonable, and I would have thought so too not long ago. But now I'm not so sure... I had 6 cycles of taxol/carboplatin/avastin at 3-week intervals October through January, and have now had 3 infusions of avastin alone, also at 3 week intervals. Mucous production, flow from tear ducts, and nosebleed tendency are now much less than in January and early February at the peak of my side effects from the 3-agent regimen. I had assumed the nosebleed part was from the avastin component of the combo therapy and would continue, but it hasn't, at least not to the same degree. One factor might be that my mucous membranes, especially the nostrils, now feel a lot more normal (less fragile) than a couple of months ago, maybe from being off the taxol/carbo or because of warmer weather or both. Bottom line: I would no longer place any importance on nosebleed tendency in trying to determine if what's called avastin in the trial is real or a placebo. So far I have felt zero side effects from the avastin alone, even during the first few days after each infusion. Every side effect I experienced from the 3-agent therapy has practically disappeared, and I'd love to stay on this track indefinitely. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
raneyf Posted March 22, 2007 Share Posted March 22, 2007 Thanks Ned - that's encouraging to hear. My family thinks I'm keeping Kleenex in business... Tanner - I'd just make sure she's getting the Avastin somehow, if I were in your situation. Good luck to you, Karen, and your girls. Raney Quote Link to comment Share on other sites More sharing options...
wendyr Posted March 22, 2007 Share Posted March 22, 2007 Hi Tanner: Maurice went into the Tarceva & Avastin/placebo trial on Dec 28/06. After just 6 wks there was some minor shrinkage & we were ecstatic. Today we got the results of Mondays scan & everything is stable. No shrinkage, but no progression either. I have tried to find out every which way I can to find out if he's getting the Avastin but nobody will tell me anything. If you are able to find out if Karen is getting Avastin, please let me know. We were told at the beginning of the trial that if his cancer progressed he would be taken out of the trial & put on 3rd line treatment. Keep the faith. Good Luck & God Bless. wendy Quote Link to comment Share on other sites More sharing options...
ursol Posted March 22, 2007 Share Posted March 22, 2007 I would probably want to change regimen's now as opposed to waiting another 4-6 weeks. my doctor moves me from one chemo to another pretty quickly if their is movement or growth. Lilly Quote Link to comment Share on other sites More sharing options...
ernrol Posted March 23, 2007 Share Posted March 23, 2007 Tanner, There are some getting Tarceva and Avastin without a trial. You don't need to be in a trial to get both. I would look in to getting out of the trial and having her get the Avastin for sure along with the Tarceva. The purpose of the trial is to see if the combination works better than Tarceva alone. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
wiesia Posted March 23, 2007 Share Posted March 23, 2007 I am with Ernie on that. Why to be in a trial at all ? Insurance should cover both Tarceva and Avastin. Quote Link to comment Share on other sites More sharing options...
spicysashimi Posted March 23, 2007 Share Posted March 23, 2007 I'm on both: tarceva and avastin. Doc told me that there is a trial but said he'll just give me both outside of the trial. As for avastin side effects, I have a runny nose - not sure if its the avastin. I have way more side effects from Tarceva. Avastin is cake. ap Quote Link to comment Share on other sites More sharing options...
Welthy Posted March 23, 2007 Share Posted March 23, 2007 Tanner, Doc's can be frustrating when it comes to scan timetables. Tony was on Tarceva for 3 mos before he would even scan. Our onc. feels that you need to give time for each regimen to work. It didn't work. He is now on 4th line treatment (see profile) that is working and shrinking the tumors again. He is tolerating this line well. We know the Doc also has a few more treatment plans up his sleeve when this treatment craps out. Do not let your Onc. toss the towel in. Hospice now?----Bah humbug. Your wife is very young -- hell Tony will be 70 next week and our Onc. doesn't even blink about treating him aggressively. If yours won't, find a different one. FYI - Tony has had runny eyes & nose on most of his treatments, also nosebleeds at times. He has never been on Avastin. Stay strong and keep us posted. Welthy Quote Link to comment Share on other sites More sharing options...
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