Lin wilki Posted February 8, 2020 Share Posted February 8, 2020 This Tuesday should be my last round of Carboplatin and Alimta. Scan in 3 weeks to see stable? Or shrinkage? Then would go on Alimta for maintenance. That’s the plan. Wish I could relax and let be, but nervous all the time. Is it working? Have stomach/gas issues. Back pain due to rib fracture. Wonder when I will ever feel better? Just needed to vent and this is the place to do it! Hubby does not want to hear my negative musings! Thanks for letting me get this off my chest! Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 8, 2020 Share Posted February 8, 2020 Hi Lin, Yes I remember the days when I wondered if this was going to be as it gets, when was I going to feel better? The rib pain- killer. I had a broken rib too. Yikes. Acupuncture took care of that for me. I met a lady in one of my groups who has been on maintenance Alimta for over three years now. She squeezes the infusions around her kids school activities and book club. Vent away my friend. Perfectly okay you feel nervous. Will pray for your upcoming scan. One day at a time.....carry on. Michelle Lin wilki 1 Link to comment Share on other sites More sharing options...
Lin wilki Posted February 8, 2020 Author Share Posted February 8, 2020 Thanks! I hope maintenance works for me!! I’m Rower Michelle 1 Link to comment Share on other sites More sharing options...
Susan Cornett Posted February 8, 2020 Share Posted February 8, 2020 Lin, I promise it gets better. I was diagnosed almost 4 years ago and have since had two recurrences. It was about a year after that last recurrence that I finally felt like my old self. I didn't get all my stamina back but that's due more to my weight gain during treatment than anything else. You just have to hang in there. Vent when you need to. We all understand. Lin wilki and JamesB 2 Link to comment Share on other sites More sharing options...
DFK Posted February 8, 2020 Share Posted February 8, 2020 Hey Lin, Not to get all sappy and stuff but when I'm fortunate to have my little darlings over for a sleepover, they're 8, 7 and 5, and as I tuck them into bed, I always make them "wish upon a star." After all our wishes are made, we sing the chorus together as the wind up music box plays. They usually keep their wishes a secret but sometimes we all vote to share our wishes. I always tell them that I wish to be around for them for a long, long time so we can always make wishes together and sing about it. There is no doubt in my mind that those little angelic voices singing, WHEN YOU WISH UPON A STAR, MAKES NO DIFFERENCE WHO YOU ARE, ANYTHING YOUR HEART DESIRES, WILL COME TO YOU has calmed my nerves and has given me hope every single day.....You gotta believe! I know you do. We both have scans coming up to show the efficacy of our treatments......it will be good for the both of us. Take Care, DFK Rower Michelle, JamesB, Tom Galli and 2 others 4 1 Link to comment Share on other sites More sharing options...
Lin wilki Posted February 8, 2020 Author Share Posted February 8, 2020 Beautiful! My hope is I am on maintenance and feeling better since we visit grandkids in AZ in May. Fingers crossed for good scans! Tom Galli and Susan Cornett 2 Link to comment Share on other sites More sharing options...
Lin wilki Posted April 1, 2020 Author Share Posted April 1, 2020 Update: I’ve been on Alimta maintenance for 2 treatments. I have one tumor that is slowly growing. Scans coming up in a couple of weeks and maybe? new plan Goal was to make progress and feel better before trip to AZ. Now — don’t feel better and virus is making us wonder if we will be able to make the trip! So much has changed. It’s too early to make a decision on trip. Just hope after staying in for April things will have improved Fingers crossed Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 1, 2020 Share Posted April 1, 2020 When is your trip to Arizona? We were supposed to go last week. I really hope things are back to normal after April for everyone. Please keep us updated when you get your new scans. Hope you are feeling a little better after these two treatments. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 1, 2020 Author Share Posted April 1, 2020 Unfortunately no I don’t feel better. Coughing more. I am stealing myself for not the best news. My oncologist said she has things to try if tumors are growing so I’m trusting her our trip is May 20. It’s for granddaughters graduation which may not even take place! So much uncertainty! All we can do is pray for a good outcome Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted April 1, 2020 Share Posted April 1, 2020 There is so much uncertainty. My heart goes out to all of the seniors, what a way to end their high school and college experiences. Link to comment Share on other sites More sharing options...
Lin wilki Posted April 1, 2020 Author Share Posted April 1, 2020 Yes very sad. I think they will only have a virtual graduation! Link to comment Share on other sites More sharing options...
Susanrae Posted April 1, 2020 Share Posted April 1, 2020 Hi Lin, I hope you start feeling better soon. I had my 3rd maintenance treatment of Alimta last Friday and have been experiencing chest pain and fatigue, hope it passes soon. Will keep my fingers crossed and say a few prayers for positive scans for you. Mine are coming up in a few weeks too. Take care now. Susan Lin wilki 1 Link to comment Share on other sites More sharing options...
Lin wilki Posted May 7, 2020 Author Share Posted May 7, 2020 Update. Alimta maintenance- more growth. Nothing seems to be doing the trick. Now my target med Kadcyla. Scans again early june seems side effects are mouth sores and burning tongue. Have to eat very bland food. All my tricks for dry mouth- not working cuz everything burns my tongue. Will ask about this next week at treatment so I keep plugging along but am sick of all the side effects Hope you had good scan results! Link to comment Share on other sites More sharing options...
Tom Galli Posted May 7, 2020 Share Posted May 7, 2020 Lin, I have good results with Biotene Oral Rinse and Spry Peppermint Mints for my dry mouth symptoms. Stay the course. Tom Link to comment Share on other sites More sharing options...
Lin wilki Posted May 7, 2020 Author Share Posted May 7, 2020 Yes thanks. Those used to work, This feels much different and I am having a hard time eating anything. So getting a prescription today for Magic Mouthwash, especially because of the mouth sores. New treatment - new side effects, If it's working, I'll have to handle it. Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted May 8, 2020 Share Posted May 8, 2020 Lin, Ice Cream, perhaps min flavored? Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 8, 2020 Share Posted May 8, 2020 Lin those side effects totally suck- glad to see you’ve got your mojo going. Hang in as best you can! Link to comment Share on other sites More sharing options...
Lin wilki Posted May 8, 2020 Author Share Posted May 8, 2020 Ice cream every nite! Soothing for my mouth. I got an RX for magic mouthwash. It completely numbs your mouth! Weird feeling but I feel a little better today Here’s hoping I can enjoy a Mother’s Day meal then an Oberweiss chocolate shake. Yeah Happy Mother’s Day to all mothers Tom Galli 1 Link to comment Share on other sites More sharing options...
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