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LindyVA

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      LindyVA
      Participant

      Yes, my husband would wake up soaking wet, even the sheets were damp. His fever would be 99 to 101. Tylenol and cold compresses usually worked. He would shake and have bad headaches like the flu. But the tumors got smaller so it was the lessor of two evils.

      Linda

      LindyVA
      Participant

      Yes, my husband would wake up soaking wet, even the sheets were damp. His fever would be 99 to 101. Tylenol and cold compresses usually worked. He would shake and have bad headaches like the flu. But the tumors got smaller so it was the lessor of two evils.

      Linda

      LindyVA
      Participant

      Yes, my husband would wake up soaking wet, even the sheets were damp. His fever would be 99 to 101. Tylenol and cold compresses usually worked. He would shake and have bad headaches like the flu. But the tumors got smaller so it was the lessor of two evils.

      Linda

      LindyVA
      Participant

      Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

      Again, thank you very much and prayer for us.

       

      Linda

       

       

      LindyVA
      Participant

      Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

      Again, thank you very much and prayer for us.

       

      Linda

       

       

      LindyVA
      Participant

      Thank you all very much for your kind words and wonderful suggestions. Unfortunately my husband tripped on fell on the sidewalk going into a resturant and broke his hip and a rib. We need to address these issues before getting back to the melanoma issue.

      Again, thank you very much and prayer for us.

       

      Linda

       

       

      LindyVA
      Participant

      I am so sorry. First yervoy was Dec 1, 2011.

      LindyVA
      Participant

      I am so sorry. First yervoy was Dec 1, 2011.

      LindyVA
      Participant

      I am so sorry. First yervoy was Dec 1, 2011.

      LindyVA
      Participant

      My husband had Gamma Knife for three mets in March after receiving two Yervoy Treatments. I was very concerned about using the steroids as I knew it is standard (cautionary procedure). I spoke to the neurosurgeon and explained about the Yervoy and how we needed to kick his immuion system into gear and I was afraid the steroids would defeat what we were trying to do with the Yervoy. He admitted  never having hearing of Yervoy (don't you just love how these docs stay up the industry) 

      I have a package insert I obtained from the infusion nurse at the first infusion which I keep in my purse in case of emergencies, hospital visits and I showed it to all his other docs so we are all on the same page with allowing the Yervoy its best chance to work. When the neurosurgeon read about Yervoy he said steroids were standard procedure, but in my husband’s case they would forego them but we would keep on eye on him for swelling. (Brought on by bleeding in the mets area)

      My husband had 3 Yervoy only 2 days after the Gamma Knife surgery. Now, seven months later the new brain MRI shows no mets at all, not even micro mets and all existing are gone.

      This was his second Gamma Knife surgery for brain mets in six months.  He has since had a PetScan which showed his lung, pancreas and chest tumors are either gone or stable. He has so far been a responder.

      He is now on Yervoy maintenance every 12 weeks, and we keep our fingers crossed that the immune system continues to fight this dreadful disease. It is still a day to day, week to week, month to month battle and we pray the Yervoy continues to work.

      By the way , the Gamma Knife surgeon also told me he did not know about Yervoy, because his job isonly above the neck, meaning the brain and he is not responsible for anything else in the body. It baffles me that these doctors do not talk to each other or look at the big picture in caring for their patients. 

      I wish the best for you and your Bfriend, but remember you have the right to question procedures and drugs and need to be sure all his docs understand Yervoy and the do's and don'ts to give it the best possible chance.

      Keep informed and make sure everyone around you is tooooooo.  Linda

       

       

       

       

      LindyVA
      Participant

      My husband had Gamma Knife for three mets in March after receiving two Yervoy Treatments. I was very concerned about using the steroids as I knew it is standard (cautionary procedure). I spoke to the neurosurgeon and explained about the Yervoy and how we needed to kick his immuion system into gear and I was afraid the steroids would defeat what we were trying to do with the Yervoy. He admitted  never having hearing of Yervoy (don't you just love how these docs stay up the industry) 

      I have a package insert I obtained from the infusion nurse at the first infusion which I keep in my purse in case of emergencies, hospital visits and I showed it to all his other docs so we are all on the same page with allowing the Yervoy its best chance to work. When the neurosurgeon read about Yervoy he said steroids were standard procedure, but in my husband’s case they would forego them but we would keep on eye on him for swelling. (Brought on by bleeding in the mets area)

      My husband had 3 Yervoy only 2 days after the Gamma Knife surgery. Now, seven months later the new brain MRI shows no mets at all, not even micro mets and all existing are gone.

      This was his second Gamma Knife surgery for brain mets in six months.  He has since had a PetScan which showed his lung, pancreas and chest tumors are either gone or stable. He has so far been a responder.

      He is now on Yervoy maintenance every 12 weeks, and we keep our fingers crossed that the immune system continues to fight this dreadful disease. It is still a day to day, week to week, month to month battle and we pray the Yervoy continues to work.

      By the way , the Gamma Knife surgeon also told me he did not know about Yervoy, because his job isonly above the neck, meaning the brain and he is not responsible for anything else in the body. It baffles me that these doctors do not talk to each other or look at the big picture in caring for their patients. 

      I wish the best for you and your Bfriend, but remember you have the right to question procedures and drugs and need to be sure all his docs understand Yervoy and the do's and don'ts to give it the best possible chance.

      Keep informed and make sure everyone around you is tooooooo.  Linda

       

       

       

       

      LindyVA
      Participant

      My husband had Gamma Knife for three mets in March after receiving two Yervoy Treatments. I was very concerned about using the steroids as I knew it is standard (cautionary procedure). I spoke to the neurosurgeon and explained about the Yervoy and how we needed to kick his immuion system into gear and I was afraid the steroids would defeat what we were trying to do with the Yervoy. He admitted  never having hearing of Yervoy (don't you just love how these docs stay up the industry) 

      I have a package insert I obtained from the infusion nurse at the first infusion which I keep in my purse in case of emergencies, hospital visits and I showed it to all his other docs so we are all on the same page with allowing the Yervoy its best chance to work. When the neurosurgeon read about Yervoy he said steroids were standard procedure, but in my husband’s case they would forego them but we would keep on eye on him for swelling. (Brought on by bleeding in the mets area)

      My husband had 3 Yervoy only 2 days after the Gamma Knife surgery. Now, seven months later the new brain MRI shows no mets at all, not even micro mets and all existing are gone.

      This was his second Gamma Knife surgery for brain mets in six months.  He has since had a PetScan which showed his lung, pancreas and chest tumors are either gone or stable. He has so far been a responder.

      He is now on Yervoy maintenance every 12 weeks, and we keep our fingers crossed that the immune system continues to fight this dreadful disease. It is still a day to day, week to week, month to month battle and we pray the Yervoy continues to work.

      By the way , the Gamma Knife surgeon also told me he did not know about Yervoy, because his job isonly above the neck, meaning the brain and he is not responsible for anything else in the body. It baffles me that these doctors do not talk to each other or look at the big picture in caring for their patients. 

      I wish the best for you and your Bfriend, but remember you have the right to question procedures and drugs and need to be sure all his docs understand Yervoy and the do's and don'ts to give it the best possible chance.

      Keep informed and make sure everyone around you is tooooooo.  Linda

       

       

       

       

      LindyVA
      Participant

      Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

      Thank you and I am runnnnnnnning to find better care.

       

      Linda

       

      LindyVA
      Participant

      Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

      Thank you and I am runnnnnnnning to find better care.

       

      Linda

       

      LindyVA
      Participant

      Thank you. I am filing out the request appointment on MD Anderson's website right now. I will do the leg work or what ever it takes to get him the best care. We are in Richmond, VA and I have been trying to find a melanoma specialist for two years. The ong he had for 5 years said he was an expert and my husband took him at his word. But he had never heard of yervoy. 2nd ong…well you read his story. I think MD Anderson would be wonderful, but an earlier post said they request $40.000. deposit. My husband was a teacher for 48 years so he did not make much but has terrific insurance. I am the second wife (19 years) so I raised my sons on a single pay.

      Thank you and I am runnnnnnnning to find better care.

       

      Linda

       

Viewing 11 reply threads
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