MarieE Posted November 4, 2020 Share Posted November 4, 2020 So, I've been kind of scarce around here since none of the news we've been dealing with has been good. We were very hopeful after my (then) very healthy husband (no symptoms of lung cancer and no other health issues) was diagnosed out of the blue last fall and had a successful lobectomy. Scan in January was good and we went about living our lives. Then Covid hit and we put off his planned April scan to May. When that showed progression, he was started on Tabrecta since he has MET exon-14 skipping but ended up not being able to tolerate it so he was switched to Xalkori. He's lost a lot of weight (about 20%; BMI is under 20) and is now on O2 and has little stamina to even stand. The recent PET scan was even worse so we were faced with the choice of either starting immunotherapy or doing nothing. My husband has opted to try Keytruda. (He has high PDL-1 and high TMB.) Given previous experience with everything from chemo to radiation and targeted drugs, I'm sorry to say my hopes are not high at this point. Link to comment Share on other sites More sharing options...
SamGirl50 Posted November 5, 2020 Share Posted November 5, 2020 Stay strong! Sending hugs and prayers to both you and your husband. Link to comment Share on other sites More sharing options...
GaryG Posted November 5, 2020 Share Posted November 5, 2020 MarieE Sorry to know your husband is having a rough time. I hope Keytruda will do the trick. Also just as a reminder, you have to find a way for him to eat and gain weight. His doctors can prescribe medication to increase his appetite. Best wishes. Link to comment Share on other sites More sharing options...
Tom Galli Posted November 5, 2020 Share Posted November 5, 2020 Marie, Add me to the hopeful wishes. Stay the course. Tom Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 I've tried everything to get him nutrition. About the only things that work are Boost Soothe drinks and adding Benecalorie (sometimes two at a time) to his homemade smoothies. His weight still keeps dropping and everything seems to taste horrible to him. The doctors have mentioned the possibility of a feeding tube. It's just beyond horrible and heartbreaking to watch what this horrible disease has done so quickly to someone who was so recently the epitome of health and vitality. Link to comment Share on other sites More sharing options...
Judy M2 Posted November 5, 2020 Share Posted November 5, 2020 MarieE, if your husband's doctors think he could tolerate the procedure, I'd consider a feeding tube. I wish I had done it when I started having esophagitis. Otherwise, anything he can tolerate would be helpful, even burgers, pizza and ice cream. Anything to gain weight and whatever works even though it may change from day to day or meal to meal. Maybe reach out to a dietician? Give the Keytruda a fighting chance. Best wishes to you both. Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 1 minute ago, Judy M2 said: MarieE, if your husband's doctors think he could tolerate the procedure, I'd consider a feeding tube. I wish I had done it when I started having esophagitis. Otherwise, anything he can tolerate would be helpful, even burgers, pizza and ice cream. Anything to gain weight and whatever works even though it may change from day to day or meal to meal. Maybe reach out to a dietician? Give the Keytruda a fighting chance. Best wishes to you both. Thank you. I actually ordered a pizza tonight and he ate one small piece. He also seems to do okay with BBQ ribs, small potatoes, and grilled cheese (and I lather on the butter). He will eat a little vanilla ice cream sometimes, but the issue still comes down to the fact that he eats so little overall. Maybe I need to get over my hesitancy about the feeding tube. I will follow up tomorrow. Thanks. Link to comment Share on other sites More sharing options...
Jennedy Posted November 5, 2020 Share Posted November 5, 2020 Marie, Hoping and praying the Keytruda works. Jenny Link to comment Share on other sites More sharing options...
Tom Galli Posted November 5, 2020 Share Posted November 5, 2020 Marie, Ice cream, ice cream, ice cream, it worked for me when my appetite left. Stay the course. Tom Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 5 minutes ago, Tom Galli said: Marie, Ice cream, ice cream, ice cream, it worked for me when my appetite left. Stay the course. Tom I just gave him some Ben & Jerry's vanilla ice cream and he's at least eating a few spoonfuls. Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 5, 2020 Share Posted November 5, 2020 Oh Marie, this is heartbreaking! Hoping the Keytruda works well. Keep us posted. Love and hugs to you. Link to comment Share on other sites More sharing options...
Judy M2 Posted November 5, 2020 Share Posted November 5, 2020 20 minutes ago, MarieE said: Maybe I need to get over my hesitancy about the feeding tube. I will follow up tomorrow. Thanks. My radiologist's team was very negative about a feeding tube, and I shouldn't have listened to them. I ended up at death's door and by that time it was too late and no longer an option. Today I'm recovered, able to eat normally and have regained 10+ pounds and am at my optimal weight. Link to comment Share on other sites More sharing options...
GaryG Posted November 5, 2020 Share Posted November 5, 2020 1 hour ago, MarieE said: I've tried everything to get him nutrition. About the only things that work are Boost Soothe drinks and adding Benecalorie (sometimes two at a time) to his homemade smoothies. His weight still keeps dropping and everything seems to taste horrible to him. The doctors have mentioned the possibility of a feeding tube. It's just beyond horrible and heartbreaking to watch what this horrible disease has done so quickly to someone who was so recently the epitome of health and vitality. MarieE: There are indeed drugs that will help him eat. I used them myself and started eating regular food, gained strength and felt a lot better. You can find the name of the medications under one of my posts. making him eat can make life a lot easier. Please make sure to ask you oncologist. Link to comment Share on other sites More sharing options...
LexieCat Posted November 5, 2020 Share Posted November 5, 2020 Oh, Marie, how I wish I could donate my extra pounds to your husband or others having difficulty with eating. Somehow I've gained weight. The Keytruda works wonders for so many--I hope it's effective here. Sending you both warm hugs. Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 Yep, I’ve said the same thing numerous times. I’d be more than happy to give him my ten extra pounds. I’ve heard of varying results with Keytruda for patients with MET exon skipping, even with very high PDL-1 like my husband, but we will give it a shot. Link to comment Share on other sites More sharing options...
LouT Posted November 5, 2020 Share Posted November 5, 2020 Marie, My hopes go along with everyone else that Keytruda does what you are hoping for. During my first bout with colorectal cancer (in 2010) I too suffered a loss of my sense of taste and smell. In my case everything smelled the same, just different intensities and everything tasted the same. Both the smells and tastes were like putting some horrid chemical in my mouth. I even tried ice creams that I loved and couldn't tolerate them. My wife finally tried white rice and gilled chicken and while they didn't taste that great either I could tolerate them and ate that almost exclusively for weeks until smell and taste returned to normal. Please keep trying different foods. In my case the doctor wasn't going to let me leave the hospital until I could eat and process my food so I wound up in the hospital days longer than planned, but finally was able to do what was needed to go home. Don't give up...you'll find something that he can tolerate to put on some weight. In the meantime my prayers go out for you and your family. Lou Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted November 5, 2020 Share Posted November 5, 2020 I'm sorry to hear that your husband isn't feeling well and having trouble with eating. LUNGevity has a personal nutritionist that could give some ideas on foods that might work better for him. It's a free service and you can text with them. Here is the information: https://lungevity.org/for-patients-caregivers/support-services/meet-ina-your-personal-intelligent-nutrition-assistant Link to comment Share on other sites More sharing options...
JamesB Posted November 5, 2020 Share Posted November 5, 2020 For some reason I got a craving for popsicles. I like the cold in my mouth and they are just the right size.It's some calories see if he likes them. I am partial to the pear ones. I hope he starts getting more food in soon. I have done 2 bags of liquid nutrition via infusion as I'm having a bit of a tough time too. Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 Sorry to hear that you are having a rough time, too, James. Hope it starts getting better for you soon. (And I just put popsicles on the shopping list. Thx.) Link to comment Share on other sites More sharing options...
BridgetO Posted November 5, 2020 Share Posted November 5, 2020 Marie, Has he tried Boost Soothe? It's a clear drink with just protein and carbs, designed for people with cancer who have taste/smell/consitency problems with food. Link to comment Share on other sites More sharing options...
MarieE Posted November 5, 2020 Author Share Posted November 5, 2020 Y 26 minutes ago, BridgetO said: Marie, Has he tried Boost Soothe? It's a clear drink with just protein and carbs, designed for people with cancer who have taste/smell/consitency problems with food. Yes, Boost Soothe drinks have been a savior. His nutritionist recommended them and gave us some samples several months ago and we've relied on them ever since. Also, I add Benecalorie to homemade smoothies. Link to comment Share on other sites More sharing options...
MarieE Posted November 14, 2020 Author Share Posted November 14, 2020 Well, he had his first infusion 5 days ago and the major side effect so far seems to be increased fatigue. Unfortunately, he ends up sleeping a lot during the day but then is wide awake at night. Thankful that he seems to be tolerating it well, but just hoping that it works to keep the cancer at bay. Link to comment Share on other sites More sharing options...
Saturn_Bound Posted November 16, 2020 Share Posted November 16, 2020 Just want to add my well wishes to you and your husband! My mom recently started Keytruda as well, and I am hoping and praying it works for her too ❤️ Link to comment Share on other sites More sharing options...
Deb W Posted November 17, 2020 Share Posted November 17, 2020 Hi Marie - I am so sorry your husband is having such a rough time. It is totally normal to feel more fatigue from the Keytruda. I am hopeful for your husband because I also have the MET mutation and Keytruda has worked for me. 🙏 Deb Link to comment Share on other sites More sharing options...
MarieE Posted November 17, 2020 Author Share Posted November 17, 2020 21 minutes ago, Deb W said: Hi Marie - I am so sorry your husband is having such a rough time. It is totally normal to feel more fatigue from the Keytruda. I am hopeful for your husband because I also have the MET mutation and Keytruda has worked for me. 🙏 Deb Thanks for the encouraging words, Deb! I'm glad to hear that Keytruda worked for you. I had been hearing that it wasn't always as successful as expected with NSCLC with genetic drivers, despite high PDL1. The main issue he's having right now is severe pain from a chest tumor and we are working with a pain specialist to get that under control. Link to comment Share on other sites More sharing options...
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