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Forum Replies Created
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- April 21, 2015 at 12:59 pm
Dear Artie,
I was so sure your scans will be "ok" and you can go on with Keytruda. Though you might find something that works even better or you have the chance to combine something with Keytruda. Your are so strong in what your are doing. I am sure you will find a therapy you are fine with. You have excellent docs in the US and the best options in respect to new drugs.
Just want to let you know that I am sending you some positive thaughts.
All the best, Jenny
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- February 16, 2015 at 9:14 am
Dear Crystale,
this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?
Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.
All the best to you, Jenny
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- February 16, 2015 at 9:14 am
Dear Crystale,
this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?
Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.
All the best to you, Jenny
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- February 16, 2015 at 9:14 am
Dear Crystale,
this really sounds like your husband should see a doctor who is familiar with all sort of side effects asap. As you might remember, my husband also had a bad swelling right after the first infusion, but "only" in the tumor areas. From your description I assume there were no tumors found in his ankles or hip, right?
Is your husband still taking Tafinlar? I never heard of these side effects with Tafinlar, but it might be rare. My husband had amond others facial paralysis from Zelboraf, he had been through all kind of checks until they ended up with the diagnosis "side effect, but rare". There can always be some kind of rare side effect, but please get it checked. Maybe they can put him on some kind of effective pain med for a while.
All the best to you, Jenny
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 3:06 pm
Rick,
I wish there is anything to help you. I have been following your story for a while and you are such a wonderful caregiver to your wife.
I hope that Keytruda is working for your wife and all this trouble is just caused by the swelling in the brain due to T-Cells.
You are in my thaughts, Jenny
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- February 10, 2015 at 11:21 am
My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!
The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.
Wish you all the best, Jenny
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- February 10, 2015 at 11:21 am
My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!
The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.
Wish you all the best, Jenny
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- February 10, 2015 at 11:21 am
My husband started on Keytruda last summer. All his tumors were visible. Right on the first day the area around the biggest one turned reddish. The next days it worsened, he had a bad swelling (at least doubled in size), the area was hard as stone and very painfull, he could hardly sleep. He had to take strong pain meds. But the pain was only in the tumor areas. Over the weeks everything improved and we could see tumors melting away. His first scan only showed one small suspect area, doctors assumed that it is scar tissue due to surgery and radiation. The biggest tumor, about 6cm, was gone. January scans didn't show anything, NED! Except from the first weeks he never had any clear side effects. He is getting his 10th dose this week. We are more than thankfull!
The symptoms you are describing remind me of the condition my husband was in after taking Zelboraf for 10 months. He also had pain in the morning which improved during the day. He didn't have those side effects later on Tafinlar.
Wish you all the best, Jenny
