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Time for a new (last?) plan ...


MarieE

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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.

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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.

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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.

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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. 

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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.

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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.

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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. 

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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. 

 

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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.

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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. 

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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

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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

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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.

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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.

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  • 2 weeks later...

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.

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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

 

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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.

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