Sunburned feeling in my hands and feet. This is what my doctor calls a Hand-Foot Skin Reaction (HFSR). It's caused by my Regorafenib (my chemo pills). Many people get it and sometimes they get blisters or callouses on their hands and feet. Thankfully so far all I have is redness and tenderness. I want it to go away but there is nothing I can do about it.
So I have been taking taking the Regorafenib for three weeks. Next week I will be able to have a week off and then I have to take them again for another twenty one days with a week off and then I have to do it one more time. I have been experiencing hot flashes and I have been a little tired but not too bad. I don't know if the hot flashes are caused by the onset of Menopause or if it's the drug itself. Either way it really sucks.
In this clinical trial in Chicago, there are nine people that are enrolled that have Ewing's Sarcoma and are taking the drug. I wish I could find out how they are doing on the drug but I obviously can't ask. Next week I have to do another CT Scan, and yes I have to drink the stupid Barium again. Pisses me off. I never had to do that in Japan. Whatever, different cultures I guess. I also have my appointment at 8:00 AM so that means I have to start drinking the Barium around 6:00 AM and my last meal is at 3:15 AM. Yeah I am really going to eat then.
Anyway, since being on the Regorafenib I haven't really been in any pain. I still get shooting pain down my leg if I sit a certain way but I can finally sleep in my bed all night and I can walk a little easier. The doctor has even reduced my Morphine. Now instead of taking 275 MG morning, noon and night, I now take 215 MG morning and night and I take 115 MG in the afternoon. Hopefully I can eventually get off of it because I miss driving (the doctor and my family said they don't think I should drive while being on such a high dose of Morphine, even though I'm not high they just feel it's best, so whatever) and I don't want to have to be on it for the rest of my life. I also need to just work on losing some weight. I think it would help my mobility. I would like to lose a pound a week (or more) to lose sixty five pounds, then work my way from there. People say don't worry about your weight, but I do. I know there is a chance I can get really sick and need my chunk but I just don't feel comfortable and like I said, it might help my mobility.
Well that's basically all that has been going on. I have been just trying to take it easy and try to enjoy life. I wish there were some place neat Travis and I could go to that is cheap or free since we don't have money. I would like to go camping but even that can get a little pricey. Oh well, we will figure out something, we always do. Anyway, thank you for reading and hope you get out and enjoy the weather. Just think in a few months it will be Winter again. (>_<) Gross.
*If you would like to help Travis and I with our hospital bill in Japan and some living expenses, we would greatly appreciate it. Even $5. You could donate at: www.gofundme.com/Reichardt
So I have been taking taking the Regorafenib for three weeks. Next week I will be able to have a week off and then I have to take them again for another twenty one days with a week off and then I have to do it one more time. I have been experiencing hot flashes and I have been a little tired but not too bad. I don't know if the hot flashes are caused by the onset of Menopause or if it's the drug itself. Either way it really sucks.
In this clinical trial in Chicago, there are nine people that are enrolled that have Ewing's Sarcoma and are taking the drug. I wish I could find out how they are doing on the drug but I obviously can't ask. Next week I have to do another CT Scan, and yes I have to drink the stupid Barium again. Pisses me off. I never had to do that in Japan. Whatever, different cultures I guess. I also have my appointment at 8:00 AM so that means I have to start drinking the Barium around 6:00 AM and my last meal is at 3:15 AM. Yeah I am really going to eat then.
Anyway, since being on the Regorafenib I haven't really been in any pain. I still get shooting pain down my leg if I sit a certain way but I can finally sleep in my bed all night and I can walk a little easier. The doctor has even reduced my Morphine. Now instead of taking 275 MG morning, noon and night, I now take 215 MG morning and night and I take 115 MG in the afternoon. Hopefully I can eventually get off of it because I miss driving (the doctor and my family said they don't think I should drive while being on such a high dose of Morphine, even though I'm not high they just feel it's best, so whatever) and I don't want to have to be on it for the rest of my life. I also need to just work on losing some weight. I think it would help my mobility. I would like to lose a pound a week (or more) to lose sixty five pounds, then work my way from there. People say don't worry about your weight, but I do. I know there is a chance I can get really sick and need my chunk but I just don't feel comfortable and like I said, it might help my mobility.
Well that's basically all that has been going on. I have been just trying to take it easy and try to enjoy life. I wish there were some place neat Travis and I could go to that is cheap or free since we don't have money. I would like to go camping but even that can get a little pricey. Oh well, we will figure out something, we always do. Anyway, thank you for reading and hope you get out and enjoy the weather. Just think in a few months it will be Winter again. (>_<) Gross.
*If you would like to help Travis and I with our hospital bill in Japan and some living expenses, we would greatly appreciate it. Even $5. You could donate at: www.gofundme.com/Reichardt