› Forums › General Melanoma Community › Artie…
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BrianP.
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- June 25, 2015 at 2:09 pm
Hey Guys I've been MIA for a little while. Here is my Adam update… The nurse that is in charge of things at NIH was so so so nice she went above and beyond to help me!! ( I would so recommend NIH due to her kindness alone!) sadly Adam was turned down after they looked at his MRI and they saw the Lepto. Adam is on a chemo combo right now ( he had one dose while in UVA 4weeks ago) we are waiting for his platelets to go up for his second dose. He's on 4mg of dexametazone every 6 hours and that mixed with the morphine has GREATLY decreased his pain!! He can still get up to go to the bathroom but walking is very tiring for him. I feel that we are truly taking each day as it comes and as long as pain is not a problem each day is truly a blessing.
Emily
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- June 25, 2015 at 4:16 pm
Thanks Emily. At least here most of us know what you are going through. That's great they've been able to get his pain down. Last winter they had me on 3 different types at the same time. Now I'm on none. Hopefully you can get in touch with that md anderson place that treats lepto. Maybe they can help with that or tell his doc how. I dunno. That is a really good sign he can get up and go to the bathroom himself. I've been there. It can be really hard just standing up. Then that first step then another. Sadly I know what he's going through. He's got to keep his strength up and do only what he can do. If that's only a few steps every few hours or a bunch as long as he's walking that is good. At least that's the way I look at it for me. I did a 30 minute walk outside this morning before it got too hot. Then I do several 10 minute inside during the day. But I remember last winter walking inside like less than 5 minutes all day because that was all I could do. But I said as long as I can walk and talk I'm going to beat this. It sure isn't easy. I use a cane now mainly to help ensure I don't fall.
Ive heard some good things about that chemo combo. Hopefully it will get him through this rough patch and he'll get better for a great treatment.
Thats too bad about NIH but it just wasn't meant to be right now. Like last winter I was supposed to go but it just wasn't the right time but now I think it might be for me. So he might make it back there too if it is meant to be. The nurse I talk to there about every week is Jessica yingling. She seems nice.
Good luck to you both.
Artie
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- June 25, 2015 at 4:16 pm
Thanks Emily. At least here most of us know what you are going through. That's great they've been able to get his pain down. Last winter they had me on 3 different types at the same time. Now I'm on none. Hopefully you can get in touch with that md anderson place that treats lepto. Maybe they can help with that or tell his doc how. I dunno. That is a really good sign he can get up and go to the bathroom himself. I've been there. It can be really hard just standing up. Then that first step then another. Sadly I know what he's going through. He's got to keep his strength up and do only what he can do. If that's only a few steps every few hours or a bunch as long as he's walking that is good. At least that's the way I look at it for me. I did a 30 minute walk outside this morning before it got too hot. Then I do several 10 minute inside during the day. But I remember last winter walking inside like less than 5 minutes all day because that was all I could do. But I said as long as I can walk and talk I'm going to beat this. It sure isn't easy. I use a cane now mainly to help ensure I don't fall.
Ive heard some good things about that chemo combo. Hopefully it will get him through this rough patch and he'll get better for a great treatment.
Thats too bad about NIH but it just wasn't meant to be right now. Like last winter I was supposed to go but it just wasn't the right time but now I think it might be for me. So he might make it back there too if it is meant to be. The nurse I talk to there about every week is Jessica yingling. She seems nice.
Good luck to you both.
Artie
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- June 25, 2015 at 4:16 pm
Thanks Emily. At least here most of us know what you are going through. That's great they've been able to get his pain down. Last winter they had me on 3 different types at the same time. Now I'm on none. Hopefully you can get in touch with that md anderson place that treats lepto. Maybe they can help with that or tell his doc how. I dunno. That is a really good sign he can get up and go to the bathroom himself. I've been there. It can be really hard just standing up. Then that first step then another. Sadly I know what he's going through. He's got to keep his strength up and do only what he can do. If that's only a few steps every few hours or a bunch as long as he's walking that is good. At least that's the way I look at it for me. I did a 30 minute walk outside this morning before it got too hot. Then I do several 10 minute inside during the day. But I remember last winter walking inside like less than 5 minutes all day because that was all I could do. But I said as long as I can walk and talk I'm going to beat this. It sure isn't easy. I use a cane now mainly to help ensure I don't fall.
Ive heard some good things about that chemo combo. Hopefully it will get him through this rough patch and he'll get better for a great treatment.
Thats too bad about NIH but it just wasn't meant to be right now. Like last winter I was supposed to go but it just wasn't the right time but now I think it might be for me. So he might make it back there too if it is meant to be. The nurse I talk to there about every week is Jessica yingling. She seems nice.
Good luck to you both.
Artie
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- June 27, 2015 at 11:01 am
Emily,
So sorry NIH didn't work out. I'm saying prayers for you Adam and you. I'll be a UVA on Monday. Let me know if you are around and would like to meet up.
Brian
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- June 29, 2015 at 2:58 pm
Emily,
I had Weiss and now Gaughan also. I'm here at uva now (10:50). Scheduled to see Gaughan around 11:45 and my infusion around 1:00. I'm wearing jeans, light blue shirt, with a black backpack. Hope the swelling goes down but if you come in and see me please say hello.
Brian
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- June 29, 2015 at 2:58 pm
Emily,
I had Weiss and now Gaughan also. I'm here at uva now (10:50). Scheduled to see Gaughan around 11:45 and my infusion around 1:00. I'm wearing jeans, light blue shirt, with a black backpack. Hope the swelling goes down but if you come in and see me please say hello.
Brian
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- June 29, 2015 at 2:58 pm
Emily,
I had Weiss and now Gaughan also. I'm here at uva now (10:50). Scheduled to see Gaughan around 11:45 and my infusion around 1:00. I'm wearing jeans, light blue shirt, with a black backpack. Hope the swelling goes down but if you come in and see me please say hello.
Brian
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