@s-aumann
Forum Replies Created
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- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
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- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
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- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
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- August 31, 2015 at 6:50 am
I didn't realize i posted my response 2 times.. Can you delete a post? Also, I saw that (Bubbles?) had a link and I tried to creat a link and wasn't able too. Thirdly, I'm a newbie. I've only posted or replied a coupleof times- my keyboarding sucks so it's hard to spend the time, but have had wonderful responses. I love what I read, and hearing other stories. Thank you all for that.
People, including Oncologist, said not to go on steroids while you take katruda, so I can't tell you how RELIEVED I am to hear it doesn't interfer with tumor response. (i didn't understand someof that info, though, too medical) I have been so fearful for my son, because several drs. have written him off, or so it seems, with their sad "there is no hope" looks when they see the scans.
SarahA.
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- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
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- August 31, 2015 at 6:26 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahA. .
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- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
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- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
-
- August 31, 2015 at 6:24 am
Steroids (at least the one my son is on – Decadron) can be filled anywhere and will reduce the edema/swelling and is helpful for the rashes that are a common side effect. They will also give you increased energy and increased appetite. (my son gained 8 lbs in 7 days). This being said, steroids also interfer with Ketruda, making the treatment ineffective. I would think that unless the swelling is life-threatening, you shouldn't go on the steroids. Except our Dr. just said that ketruda could be still effective when patients have started it and then used steroids to treat rashes.
My son has to be on steroids because he has over 40 brain mets, all of them swelling , putting pressure on his brain, causing a heart-breaking decline both cognitive and physical(strength,balance,coordination). Everytime we try weaning him off the steroids he declines. We were trying to wean him off because he is getting th infusion, too. He went on steroids the 2nd day after his 1st infusion, and has to stay on them because it is the only thing that keeps the swelling down.
Best to you,
SarahAt. .
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- August 13, 2015 at 4:21 am
That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.
I can't thak you enough for sharing your story and your suggestions.
Sarah
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- August 13, 2015 at 4:21 am
That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.
I can't thak you enough for sharing your story and your suggestions.
Sarah
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- August 13, 2015 at 4:21 am
That's probably why Gajewski said that there weren't any trials, Arthur probably isn't a candidate for any of them. We did steriotactic radiation-cyborknife- is that the same as gamma knife? idk what a double craniotomy is, but i'll look it up. The Drs aren't real hopeful that the radiation will do much/last long, because he had initial WBR and one of the larger tumors hemorraged, so after removing it they did steriotactic radiation on the cavity and on the other 2. Within 2 months he had 3 more, then a month later the "too many to count" MRI.
I can't thak you enough for sharing your story and your suggestions.
Sarah
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Thanks, again!