Shelkay1 Posted October 30, 2018 Author Share Posted October 30, 2018 Thanks all, this really isn't fun. Steroids are all finished for this round. Hoping to crash into la good sleep soon. Never experienced the eating rage you describe. Nothing is appealing, only eating because I know I have to. From what I continue to read, charting is good because effects will be almost the same next time; I've been doing that. Are side effects cumulative, meaning do they worsen with each infusion or stay about the same? Link to comment Share on other sites More sharing options...
LexieCat Posted October 30, 2018 Share Posted October 30, 2018 Hang in there, Shel. I don't have any info/suggestions, just sending an encouraging word. I hope the next round is easier on you. Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 30, 2018 Share Posted October 30, 2018 For me, the side effects were cumulative with the Cisplatin/Alimta. Super Doc prescribed 2 different anti-nausea meds so that I could alternate them throughout the day without overdosing on one or the other. My appetite came back on Wednesdays and I always wanted lemonade and chicken tenders. Because I ate so many bananas and drank so much ginger ale during chemo, it was almost a year before I could tolerate either of those. Hang in there. There is a finish line in sight. Link to comment Share on other sites More sharing options...
Laurel Posted October 30, 2018 Share Posted October 30, 2018 I found each infusion had increased side effects, earlier and longer. I agree with Tom....get ahead of the nausea by taking meds soon. Link to comment Share on other sites More sharing options...
Tom Galli Posted October 30, 2018 Share Posted October 30, 2018 I had old fashion Taxol and Carboplatin. My side effects were not cumulative (did not increase over time). After my steroid induced appetite, my taste buds became challenged and my appetite waned. My wife (a dietitian) read that mint flavoring was often satisfying to those with my chemo recipe. She made chocolate mint chip ice cream and it sustained me during the middle week of my 3-week cycle. For variety, she’d make Oreo chocolate mint ice cream. Peppermint life savers also became a fix for my metallic mouth syndrome. I also cultivated a taste for tart flavor and preferred unsweetened cranberry juice. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted October 31, 2018 Share Posted October 31, 2018 Hang in there Shelkay, we dealt with it because we had to. Mine wasn't as bad as some,, but it's never any fun. You can complain and vent here has much asa you want. Maybe some of our suggestions will help, maybe not. In any event, we understand. Link to comment Share on other sites More sharing options...
Shelkay1 Posted October 31, 2018 Author Share Posted October 31, 2018 Thankfully relief has come! I slept about 7 hours last night & was even able to work 4 hours today. Now I have a better idea if when things will start & stop, I know next time "this too shall pass". Link to comment Share on other sites More sharing options...
LaurenH Posted November 8, 2018 Share Posted November 8, 2018 Hi, Shelkay, Just wanted to check in and see how you're doing. Please post an update when you can! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Shelkay1 Posted November 9, 2018 Author Share Posted November 9, 2018 Thanks for checking. I'm doing okay right now. Day 3, 4 & 5 following my 1st infusion were rather miserable, but once I was past those it has been much easier. Some of my white cell counts have dropped really low; waiting to talk with my oncologist tomorrow to see if they want to do anything about it or just for me to be extra cautious around others. My work has been great with me working a limited schedule & they set me up in a private office to minimize my chances of exposure to others. The cycle starts all over again next Thursday,; even though I know what to expect, I also know it will only last a few days. Link to comment Share on other sites More sharing options...
LaurenH Posted November 14, 2018 Share Posted November 14, 2018 I’m glad that your work has been so supportive! Good luck with this next cycle. We’ll be thinking of you and hoping that it’s a bit better this time around. With gratitude, Lauren — Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
Shelkay1 Posted November 27, 2018 Author Share Posted November 27, 2018 My 2nd chemo was on 11/15, I had some different & longer lasting side effects from the first time. I can't wait to see what fun #3 has in store for me! I have great medical insurance, I do pay extra since I've had ongoing health issues other than lung cancer. Except for my deductable, everything has been covered for my testing, lobectomy & treatments. I just saw the bills for my chemo treatments alone & was floored! How does anyone who is un/under insured survive this financially? Fighting this disease is hard enough physically, emotionally and mentally... but to have to worry about the financial too?? I guess maybe all this is where we can thank the "Obama Care" program for making sure everyone has insurance & the lifetime maximum insurance payouts have been removed. Link to comment Share on other sites More sharing options...
BridgetO Posted November 27, 2018 Share Posted November 27, 2018 Hi Shelkay, I have great medical insurance, too, for which i'm grateful. I got my current coverage in January 2008 , had a mammogram and and was diagnosed with breast cancer, the first of my three cancers. I was also retired at that time, so didn't have to worry about work. So I guess you could say I was well situated to deal with cancer. Ugh! I agree with you that it's hard enough to deal with this disease without bing financially devastated too. Link to comment Share on other sites More sharing options...
dcb003 Posted December 7, 2018 Share Posted December 7, 2018 I wonder if any one in this forum requested a second opinion about lung cancer. And is it a good idea after your doctor says your cancer is inoperable? I look forward to your feedback! Thanks! Link to comment Share on other sites More sharing options...
Robert Macaulay Posted December 7, 2018 Share Posted December 7, 2018 Dcb003 If you knew the reasons for there decisions not to operate that might help you make a decision. Bob Link to comment Share on other sites More sharing options...
LexieCat Posted December 7, 2018 Share Posted December 7, 2018 Bob's right. Many of the reasons cancer is deemed "inoperable" are, for surgeons, no-brainers. They include situations where the cancer has spread significantly or where the tumor's location makes it too dangerous to operate. You said that the PET scan showed your cancer had spread "all over." That pretty much takes it out of the realm of operability. You said you have a biopsy scheduled soon. That might provide all the information needed to make an initial treatment plan. At that point, depending on what's being recommended, you might want another opinion. Right now, though, anyone you see is going to agree surgery is impossible and require a biopsy to determine the most appropriate treatment. Link to comment Share on other sites More sharing options...
Shelkay1 Posted December 9, 2018 Author Share Posted December 9, 2018 Third infusion of Cisplatin/Alimta was on Thursday. Side effects started that same evening. I've had a major headache for the last several weeks that just will not go away & some swelling around my eyes. Doctor has ordered an MRI of my brain (12/20) to make sure it's not metastasized there. When they did the lobectomy, they were unable to get all the cancer & on the TNM scale my M was labeled as X because of unknowns. I've been reading up on this & I see there is a 30%-40% chance of brain metasis & that chemo does not cross over & help destroy any cancer cells getting to the brain. I know I should stop reading so much! Link to comment Share on other sites More sharing options...
Laurel Posted December 9, 2018 Share Posted December 9, 2018 I'm so sorry about your side effects. The waiting and testing is scary. Sending prayers and hugs. Link to comment Share on other sites More sharing options...
BridgetO Posted December 10, 2018 Share Posted December 10, 2018 Hang in there, Shelkay! Waiting is terrible, I know. Until you have this checked out, you won't know for sure if your headaches are even cancer-related. Or side-effect related. I'm sending good thoughts your way. Link to comment Share on other sites More sharing options...
Shelkay1 Posted December 10, 2018 Author Share Posted December 10, 2018 Thanks Laurel & Bridget, I find myself thinking of the worst possible scenarios when I'm feeling my worst & unable to sleep. I know I need to chill & just wait for the MRI results, think positively in the meantime & enjoy Christmastime with my family. Link to comment Share on other sites More sharing options...
Laurel Posted December 10, 2018 Share Posted December 10, 2018 To give my mind a respite, I went to youtube.com and would do 5 minute meditation videos. As I felt a little shift in attitude, I might pull up music....like Happy by Pharell or poker face by Lady Gaga. Sending hugs. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 13, 2018 Share Posted December 13, 2018 Hi Shelkay, Totally understand how sleep can be elusive. You might want to check out some white noise sound machines to help you sleep. We found a great one on Amazon- (sound+sleep for $84) Every night I listen to the ocean (birds, buoy bells included). If I’m listening intently there’s no room left in my brain for the worry monster. This little box wasn’t cheap but a good night’s rest is priceless. Tom Petty got it right- the waiting is the hardest part. Hang in there. Michelle Link to comment Share on other sites More sharing options...
Recommended Posts
Archived
This topic is now archived and is closed to further replies.