@atcchris
Forum Replies Created
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- April 1, 2013 at 1:18 pm
I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing. Thank you for posting the question and all the responses because it does let me know this is normal. I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning. Still fatigued, but not debilitatingly so. I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges. I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out. Eating regular meals is huge in getting strength back up. I also had trouble sleeping, but got a sleeping pill and started getting more sleep. Food and sleep… must have those for energy!!!! God is so good to keep blessing me with ideas and ways to battle this beast. I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!" Yes, He does…
Chris
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- April 1, 2013 at 1:18 pm
I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing. Thank you for posting the question and all the responses because it does let me know this is normal. I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning. Still fatigued, but not debilitatingly so. I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges. I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out. Eating regular meals is huge in getting strength back up. I also had trouble sleeping, but got a sleeping pill and started getting more sleep. Food and sleep… must have those for energy!!!! God is so good to keep blessing me with ideas and ways to battle this beast. I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!" Yes, He does…
Chris
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- April 1, 2013 at 1:18 pm
I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing. Thank you for posting the question and all the responses because it does let me know this is normal. I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning. Still fatigued, but not debilitatingly so. I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges. I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out. Eating regular meals is huge in getting strength back up. I also had trouble sleeping, but got a sleeping pill and started getting more sleep. Food and sleep… must have those for energy!!!! God is so good to keep blessing me with ideas and ways to battle this beast. I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!" Yes, He does…
Chris
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- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
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- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
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- March 26, 2013 at 1:33 pm
I am blessed immeasurably. I have an army of people praying for me, both at work (including my boss.. and I work for the FAA!) and at church, plus family and other friends. It's amazing.. we can't do it alone.
The florinef and Hydrocortison started when they detected high potassium levels.. about 2 weeks ago.. so not before Ascites or YERVOY.. I wasn't take any medication at all, then nausea hit and I lost some meals.. plus appetite hasn't been very strong in the first place. I was/still am a big guy.. was up to 350lb before they finally got to my first draining for Ascites.. course I lost about 15-16lbs from that because they drained 8 liters the first time! So I was hovering around the mid 330s, then started with the nausea and no meds.. I lost 31 pounds additionally in the two weeks after that, and some of my levels started being affected.. not sure if losing all the weight and meals combined with the constant 2 liter/day fluid removal had anything to do with it… but it was coincident with all that when they found the high potassium and low sodium. They said these two drugs would hopefully hold the potassium at bay. Doc said just because it's high is kind of dangerous in itself, but the real danger is when the levels spike.
I haven't asked about TSH, but I certainly will. Doc said this could be the sign of YERVOY kicking in, so I'm hopeful.
Thanks for the info on the MEK, and I appreciate your prayers. Did bloodwork yesterday and potassium is still high.. plus creatinine is inching up so they're giving me some fluids today.. gonna ask about the TSH.
Chris
