shineladysue Posted September 19, 2005 Share Posted September 19, 2005 Well,it looks like Mike will have to come off the Tarceva permanently. Ater two attempts to take it, the side effects became worse and worse. He was first on 150mg. for 5 days and developed a severe rash with puss on the tops. The onc took him off for two weeks and then started him on 100mg. After 11 days on that he not only has a much worse rash than before, but lack of appetite and shortness of breath. We saw the doctor today and he says if the shortness of breath isn't better in two days he will need to start on prednisone 40 mg. Omg, it could cause him to have steroid psychosis again, but pneumonitis can only be treated with prednisone. The doctor doesn't think it's pneumonitis at this time and says his breathing sounds good. Only time will tell. We've been through pneumonitis before and we pray it's not the case. He never fully recouperated the first time. He is on oxygen 24/7. He only has the one lung and any breathing difficulty is that much more of a concern. Anyhow, this is not what we had hoped, but we will see the doctor in one week and he will tell us then what new plan he has for us to consider. Mike has been on so many different kinds of chemo that we aren't sure what is left. Guess all we can do is take it one day at a time and pray. We would appreciate all the positive thoughts and prayers you can send our way. Thanks. As always, all our prayers are going out for all of you. Love, Sue Quote Link to comment Share on other sites More sharing options...
Kasey Posted September 19, 2005 Share Posted September 19, 2005 Oh (((Sue))), I am collecting ALL positive thoughts, many heartfelt prayers, warm and caring hugs, and strong shoulders for you to lean on. Hope some of that will help you through this very unnerving time. I think of you and Mike so much. I will remain hopeful that symptoms will improve WITHOUT meds to cause psychosis. Remember to come here for what you need to continue on this journey. Love, Kasey Quote Link to comment Share on other sites More sharing options...
Patkid Posted September 19, 2005 Share Posted September 19, 2005 (((Sue))))))) Many many prayers and lots of support and understanding coming your way. Sorry Mike had to join Bill and Bri in Tarceva failure club. I was sure it had to do w/ men whose names began w/ B............. Hopefully your onc will find the ticket. Love Brat Quote Link to comment Share on other sites More sharing options...
hopeandstrength Posted September 19, 2005 Share Posted September 19, 2005 Positive thoughts and prayers are coming your way. Cathy Quote Link to comment Share on other sites More sharing options...
Maryanne Posted September 19, 2005 Share Posted September 19, 2005 Sue, Iam so sorry to hear the news about (((Mike))) Prayers sent his way. Maryanne Quote Link to comment Share on other sites More sharing options...
Ry Posted September 20, 2005 Share Posted September 20, 2005 Rats! It sounds like he is one of the people that react badly to the Tarceva. It's a good thing they took him off before it got worse. I hope he gets to feeling better soon and you can formulate a new plan. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted September 20, 2005 Share Posted September 20, 2005 I am sending prayers. Quote Link to comment Share on other sites More sharing options...
Addie Posted September 20, 2005 Share Posted September 20, 2005 On to Plan B, it sounds like. Glad the doc is working on it and will have a new direction for Mike to go in within a week. Who knows...the next tx might be THE ticket...and if he hadn't reacted poorly to the Tarceva....well, you wouldn't have started on "the ticket" so soon...huh? Hold positive thoughts, Sue and do keep us posted. We're all pulling for Plan B to work like gangbusters...whatever it is! Quote Link to comment Share on other sites More sharing options...
nancy c Posted September 20, 2005 Share Posted September 20, 2005 That's ok-- on to the next plan. My husband was many different chemo's. Just keep trying!!! Don't give up. God bless,Nancy C Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 20, 2005 Share Posted September 20, 2005 Lots of prayers and good wishes from here for an alternative plan that will have good results with no bad side effects. Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted September 20, 2005 Share Posted September 20, 2005 Some news and hope-my mom had steroid induced psychosis once, but she is on a ton of steroids right now (and has been for about 2 weeks now) and none of the crazy business..yet. I think that when your body really needs the steroids, the side effects are less. Maybe it is the long term use of them that is terrible on the psyche. I don't know because I have not been on them, but if it helps, then I guess it is worth it. It's just very stressful, I know! Everyone is right, there ARE more options, just believe and then start checking around. I know my mom would oppose to using any other Dr., so I hope your hubby is open to that. God bless and prayers for strength! Quote Link to comment Share on other sites More sharing options...
Ann Posted September 20, 2005 Share Posted September 20, 2005 Sue, I'm saying lots of prayers for both of you! It sounds as if the doctor is on top of the situation and wants to take time to plan a good strategy!!! Quote Link to comment Share on other sites More sharing options...
LynneH Posted September 20, 2005 Share Posted September 20, 2005 Sounds like the doctor is looking out for Mike and that is a positive, even if it seems disappointing. As Addie said very well, now on to a plan of action that will get some good results. There are so many cocktails to choose from, there will be others to try and one has Mike's name on it! Hang in there, Lynne Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 20, 2005 Share Posted September 20, 2005 Well, POOP! This is not what we wanted to hear, Sue, but you know, it seems these oncologists just always have something else to try. Keep at it, girlfriend. Tell Mike to NEVER GIVE UP!! Love and hugs, Peggy Quote Link to comment Share on other sites More sharing options...
gail p-m Posted September 20, 2005 Share Posted September 20, 2005 Sue So sorry the Tarceva is not working. Sending many prayers that Mike finds his "magic bullet" very soon. gail p-m Quote Link to comment Share on other sites More sharing options...
CharlieD Posted September 20, 2005 Share Posted September 20, 2005 Sue, Sorry to hear that Tarceva didn't do the trick. Let's hope and pray the next option will. Hang tough and keep fighting. God Bless. CharlieD Quote Link to comment Share on other sites More sharing options...
Nushka Posted September 20, 2005 Share Posted September 20, 2005 Sue, I sure hope that plan B works better for Mike. Maybe his breathing will improve on its own now that he is off of the tarceva. I know you don't want to go through the mental thing all over again. Keeping you both in my prayers for a good plan and good results. Nina Quote Link to comment Share on other sites More sharing options...
Treebywater Posted September 20, 2005 Share Posted September 20, 2005 ((((Mike and Sue)))) Darn it. I do hope you don't need the prednisone. That is what I will specifically pray for as well as success with new plans. We're here for you guys. Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted September 20, 2005 Share Posted September 20, 2005 prednisone is no fun, Sue, especially in the beginning, but it is not the same as the decadron. Two different colors of horses..or whatever that saying is... Has Mike done Avastin yet? That looks like it may be the up and coming next best deal for nslc. God Bless you both..prayers for Mike and good decisions. love Cindi o'h Quote Link to comment Share on other sites More sharing options...
shineladysue Posted September 20, 2005 Author Share Posted September 20, 2005 Thank you so much, all of you, for your support, prayers and input. It's so disappointing, to say the least when things don't work out. In this case, Mike was looking forward to not having to go for infusions for a while, but guess it's just not going to work out for him. Body chemistries are so different, I guess . We never know what to expect. We have faith in our oncologist and he has been aggressive in treatments, as long as that was Mike's choice. I'll be nosing around here to see what's working for folks and try to be prepared when we see him. He always seems a bit surprised at how much knowledge I seem to have about the different treatments. I told him I owe it to all of you. What would we do without you? I don't know. Love you all. Thanks for everything. Love, Sue Quote Link to comment Share on other sites More sharing options...
Patkid Posted September 20, 2005 Share Posted September 20, 2005 We love you, too, Sue. P Quote Link to comment Share on other sites More sharing options...
Don M Posted September 20, 2005 Share Posted September 20, 2005 Sue: you and Mike have my prayers. I am sorry to see you have this setback. I see Mike has not tried iressa. I think that it is similar to tarceva, but has less severe side effects. I would also consider trying taxol/carboplatin again, but this time add avastin to the mix. Don M Quote Link to comment Share on other sites More sharing options...
Shar Posted September 21, 2005 Share Posted September 21, 2005 So sorry to hear of the setback with Tarceva. Sending prayers and hope for the next plan of attack. Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted September 21, 2005 Share Posted September 21, 2005 Sue, So sorry the Tarceva made Mike feel worse. Hope going off it will help him feel better quickly. What's that saying...Thomas Edison tried 99 times before he produced a light bulb that worked? Hope it doesn't take 99 tries, of course, but there's something out there waiting to help Mike! Leslie Quote Link to comment Share on other sites More sharing options...
tess Posted September 21, 2005 Share Posted September 21, 2005 Dear Sue, I haven't been here much in the last year, but I check in now and then and mostly read how people are doing. I am glad you are here, it is a big help having people here who can relate to what you and Mike are going thru. I am so glad I told you about this site! I knew it would really be a big help. It was for me also. Lchelp is really a blessing! I am just so sad that the Tarceva has not helped. I am praying for you both that something will work! God Bless you and Mike, and congratulations on 35 years! Wow! Tess Quote Link to comment Share on other sites More sharing options...
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