@virginia-washburn
Forum Replies Created
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- May 20, 2014 at 1:11 pm
OK people, why all the criticism of each other? This is suppose to be SUPPORT!!
Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.
If you are BRAF/MEK POSITIVE, you have a few more treatment options.
There is no clear, concise evidence that PD-1 is effective on Brain mets.
My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi.
We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!
Keep praying for a miracle, for the doctors to find a CURE for this awful disease.
Best of luck to everyone. Prayers.
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- May 20, 2014 at 1:11 pm
OK people, why all the criticism of each other? This is suppose to be SUPPORT!!
Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.
If you are BRAF/MEK POSITIVE, you have a few more treatment options.
There is no clear, concise evidence that PD-1 is effective on Brain mets.
My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi.
We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!
Keep praying for a miracle, for the doctors to find a CURE for this awful disease.
Best of luck to everyone. Prayers.
-
- May 20, 2014 at 1:11 pm
OK people, why all the criticism of each other? This is suppose to be SUPPORT!!
Anti PD-1 is still in study, expanded access. If you have ACTIVE BRAIN LESIONS, YOU DO NOT QUALIFY for the study, or if you have to take higher than 2 mg of Decadron.
If you are BRAF/MEK POSITIVE, you have a few more treatment options.
There is no clear, concise evidence that PD-1 is effective on Brain mets.
My husband is fighting this terrible disease. He has brain, lung and subcutaneous tumors. He has done 2 rounds of Ipi / Yervoy. He had extensive progression of disease while he was getting the last round of Ipi.
We are now waiting for his next MRI on June 5 to see if he has any active brain lesions. I DO NOT have a good feeling about this. The last MRI he had at least 28!
Keep praying for a miracle, for the doctors to find a CURE for this awful disease.
Best of luck to everyone. Prayers.
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- May 13, 2014 at 6:16 pm
Hi Chris,
My husband has Stg. IV w/Brain mets (also lungs, subcutaneous, ? spleen). He had Gamma Knife x 3, then whole brain radiation. He rvcd. 2 rounds of Ipi (Yervoy). Awaiting to see if he will qualify for Anti PD-1. Thay CAN NOT have any non-responent tumors ( to radiation), or new lesions. We have been told there really isn't anything else for him if he can't get the PD-1. The brain trumps everything else!
We have been prepared for the worse. I'm sorry your daughter in law is going through this. Melanoma is just awful.
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- May 13, 2014 at 6:16 pm
Hi Chris,
My husband has Stg. IV w/Brain mets (also lungs, subcutaneous, ? spleen). He had Gamma Knife x 3, then whole brain radiation. He rvcd. 2 rounds of Ipi (Yervoy). Awaiting to see if he will qualify for Anti PD-1. Thay CAN NOT have any non-responent tumors ( to radiation), or new lesions. We have been told there really isn't anything else for him if he can't get the PD-1. The brain trumps everything else!
We have been prepared for the worse. I'm sorry your daughter in law is going through this. Melanoma is just awful.
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- May 13, 2014 at 6:16 pm
Hi Chris,
My husband has Stg. IV w/Brain mets (also lungs, subcutaneous, ? spleen). He had Gamma Knife x 3, then whole brain radiation. He rvcd. 2 rounds of Ipi (Yervoy). Awaiting to see if he will qualify for Anti PD-1. Thay CAN NOT have any non-responent tumors ( to radiation), or new lesions. We have been told there really isn't anything else for him if he can't get the PD-1. The brain trumps everything else!
We have been prepared for the worse. I'm sorry your daughter in law is going through this. Melanoma is just awful.
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- May 9, 2014 at 2:59 pm
Kimberly,
I wish you both the best.
My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen.
I, too, take his emotions and mine as they come.
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- May 9, 2014 at 2:59 pm
Kimberly,
I wish you both the best.
My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen.
I, too, take his emotions and mine as they come.
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- May 9, 2014 at 2:59 pm
Kimberly,
I wish you both the best.
My husband was also dx'd w/recurrence in his lungs Oct. 2012. Then Aug. 2013 the brain mets showed up. As I said in my original post, we are waiting to see if he will be eligible for anti PD-1. He can't have any brain lesions for that to happen.
I, too, take his emotions and mine as they come.
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- May 9, 2014 at 2:27 pm
Thank you Emily. Same here FB( Virginia Washburn). What state are you in?
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- May 9, 2014 at 2:27 pm
Thank you Emily. Same here FB( Virginia Washburn). What state are you in?
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- May 9, 2014 at 2:27 pm
Thank you Emily. Same here FB( Virginia Washburn). What state are you in?
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- May 9, 2014 at 12:50 pm
Chris,
I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second.
This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it.
All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.
I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!
Take care.
Virginia
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- May 9, 2014 at 12:50 pm
Chris,
I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second.
This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it.
All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.
I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!
Take care.
Virginia
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- May 9, 2014 at 12:50 pm
Chris,
I'm so sorry you are going through this. You are right, all I can do is "be there" for him. Even with all the mood swings, which is a lot right now, because of the radiation and high doses of steroids. I don't know what to expect or how he is going to be from one minute to the next. He can be very loving and caring, tearful, to a beast, mean and angry in a split second.
This is so hard on everyone. He says to me all the time how sorry he is that our daughter and I are having to go through this, "ya'll didn't sign up for this". But I tell hime when I said "I do", I did sign up for it.
All we can do is pray for everyone to have strength and courage to 'get through it", because that is what we are doing.
I wish you all the best. Spend as much time with that sweet little girl, write letters, take a lot of pictures, be silly and LOVE her!
Take care.
Virginia
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