Sandy11

My husband was on Ipi. He had mets throughout his torso and lungs. Ipi helped for awhile, but then subsided. He is now on Temodar and doing well. The brain lesions that had developed are all but gone. You never know.. several months ago they were recommending hospice. My stubborn Canadian husband wasnt ready to call it quits. The docs are amazed at the recent progress.  He was even out mowing the lawn today. This is particularly amazing as he had no function on his right side just over 6 months ago.Just know anything can happen.. throw all you can at this cancer.  There doesnt seem to be any one best answer, just keep trying – keep courage and hope. Wishing you two the best.

My husband was on Ipi. He had mets throughout his torso and lungs. Ipi helped for awhile, but then subsided. He is now on Temodar and doing well. The brain lesions that had developed are all but gone. You never know.. several months ago they were recommending hospice. My stubborn Canadian husband wasnt ready to call it quits. The docs are amazed at the recent progress.  He was even out mowing the lawn today. This is particularly amazing as he had no function on his right side just over 6 months ago.Just know anything can happen.. throw all you can at this cancer.  There doesnt seem to be any one best answer, just keep trying – keep courage and hope. Wishing you two the best.

My husband was on Ipi. He had mets throughout his torso and lungs. Ipi helped for awhile, but then subsided. He is now on Temodar and doing well. The brain lesions that had developed are all but gone. You never know.. several months ago they were recommending hospice. My stubborn Canadian husband wasnt ready to call it quits. The docs are amazed at the recent progress.  He was even out mowing the lawn today. This is particularly amazing as he had no function on his right side just over 6 months ago.Just know anything can happen.. throw all you can at this cancer.  There doesnt seem to be any one best answer, just keep trying – keep courage and hope. Wishing you two the best.

Im glad to hear there is some positive results. My husband went through Ipi treatments. It helped with the tumors in his lungs, but he was terribly tired as well. Keep an eye out, Ipi can cause him to be tiredness, but for my husband, it caused a lot of damage to his adrenal gland. He now takes steroids to supplement the adrenal function. It took several trips to the ER before they figured it out.  The symptoms were extreme fatigue, no appetite and very low blood pressure. That was about 9 months ago and he is doing okay now.  Wishing you the best.

Im glad to hear there is some positive results. My husband went through Ipi treatments. It helped with the tumors in his lungs, but he was terribly tired as well. Keep an eye out, Ipi can cause him to be tiredness, but for my husband, it caused a lot of damage to his adrenal gland. He now takes steroids to supplement the adrenal function. It took several trips to the ER before they figured it out.  The symptoms were extreme fatigue, no appetite and very low blood pressure. That was about 9 months ago and he is doing okay now.  Wishing you the best.

Im glad to hear there is some positive results. My husband went through Ipi treatments. It helped with the tumors in his lungs, but he was terribly tired as well. Keep an eye out, Ipi can cause him to be tiredness, but for my husband, it caused a lot of damage to his adrenal gland. He now takes steroids to supplement the adrenal function. It took several trips to the ER before they figured it out.  The symptoms were extreme fatigue, no appetite and very low blood pressure. That was about 9 months ago and he is doing okay now.  Wishing you the best.

Some physicians seem to look past the patient and check their people skills at the door.  The important thing is that he/she is good at what they do.  My husband's doc said, "At least you know what is going to kill you"… geez.  He's been a great doctor and is one of the best in his field so we're happy to over look his "mouth and foot disease".  We'll that was over 4 years ago.  My husband is stage IV and we just returned from Disneyland.  

It sounds like you were diagnosed early; which is very good and there has been much success at the early stages. Digging around for information and being consumed by the news is normal.  Hopefully, you can begin to relax a bit soon.  Be aware that much of the data is old and based on past results prior to the latest treatments.  There are lots of new treatments on the horizon and other new ones that are being used.  The long term results have yet to be published, but preliminary info looks good.    I hope your final results in a week are wonderful and offer you relief from the scare.

Take care and hang in there…

Some physicians seem to look past the patient and check their people skills at the door.  The important thing is that he/she is good at what they do.  My husband's doc said, "At least you know what is going to kill you"… geez.  He's been a great doctor and is one of the best in his field so we're happy to over look his "mouth and foot disease".  We'll that was over 4 years ago.  My husband is stage IV and we just returned from Disneyland.  

It sounds like you were diagnosed early; which is very good and there has been much success at the early stages. Digging around for information and being consumed by the news is normal.  Hopefully, you can begin to relax a bit soon.  Be aware that much of the data is old and based on past results prior to the latest treatments.  There are lots of new treatments on the horizon and other new ones that are being used.  The long term results have yet to be published, but preliminary info looks good.    I hope your final results in a week are wonderful and offer you relief from the scare.

Take care and hang in there…

Some physicians seem to look past the patient and check their people skills at the door.  The important thing is that he/she is good at what they do.  My husband's doc said, "At least you know what is going to kill you"… geez.  He's been a great doctor and is one of the best in his field so we're happy to over look his "mouth and foot disease".  We'll that was over 4 years ago.  My husband is stage IV and we just returned from Disneyland.  

It sounds like you were diagnosed early; which is very good and there has been much success at the early stages. Digging around for information and being consumed by the news is normal.  Hopefully, you can begin to relax a bit soon.  Be aware that much of the data is old and based on past results prior to the latest treatments.  There are lots of new treatments on the horizon and other new ones that are being used.  The long term results have yet to be published, but preliminary info looks good.    I hope your final results in a week are wonderful and offer you relief from the scare.

Take care and hang in there…

my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.

my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.

my husband started Temodar late May.. just BEFORE finding brain mets. After radiation and continued Temodar monthly, there has been some tumor shrinkage. He'll have more scans early next month. Like you, he is BRAF negative. The only side effects have been nausia the 1st day of each treatment and some fatigue.  (he also went through IPI treatment.. it helped, but shut down his adrenal function… this is controlled with steroids) We've heard good things about Temodar .. wishing you the best.