@cbeckner98
Forum Replies Created
- Replies
-
-
- September 3, 2015 at 8:15 am
Hi Sarah,
Besides my Dad taking marinol for appetite, I am not an expert on cannabis. But, marinol has proven very effective for him and he is finally gaining weight. Regarding the Keytruda, my Dad also experienced swelling of his brain mets after his first Keytruda infusion and eventually ended up back on steroids (after nearly starving himself to death over the intervening weeks). In any case, he doing much better now and is weaned down to 6 mg of dexamethasone per day. The doctor is hoping to get him to 2 mg per day of dex (which is almost equivalent to 10 mg of prednisone – which would be an okay steroids level while on Keytruda according to the melanoma specialist in Seattle/at SCCA). Long story short, our local oncologist gave him a half dosage of Keytruda yesterday and we are going to monitor how he reacts (and if his brain mets begin to swell again). Then, as he continues to wean off the steroids, he may get the other half of the dosage. Are your doctors waiting to fully wean your son off the steroids or would they be willing to do Keytruda while he is still on some steroids? From what I understand, the steroids will prevent the Keytruda from having full efficacy but since the drugs aren't contraindicated and no one really seems to know the right level of steroids during immunotherapy, it makes sense to keep asking about if this is a possibility for your son.
Hoping he begins to feel better soon and that something starts working for him!
Best wishes,
Carrie
-
- September 3, 2015 at 8:15 am
Hi Sarah,
Besides my Dad taking marinol for appetite, I am not an expert on cannabis. But, marinol has proven very effective for him and he is finally gaining weight. Regarding the Keytruda, my Dad also experienced swelling of his brain mets after his first Keytruda infusion and eventually ended up back on steroids (after nearly starving himself to death over the intervening weeks). In any case, he doing much better now and is weaned down to 6 mg of dexamethasone per day. The doctor is hoping to get him to 2 mg per day of dex (which is almost equivalent to 10 mg of prednisone – which would be an okay steroids level while on Keytruda according to the melanoma specialist in Seattle/at SCCA). Long story short, our local oncologist gave him a half dosage of Keytruda yesterday and we are going to monitor how he reacts (and if his brain mets begin to swell again). Then, as he continues to wean off the steroids, he may get the other half of the dosage. Are your doctors waiting to fully wean your son off the steroids or would they be willing to do Keytruda while he is still on some steroids? From what I understand, the steroids will prevent the Keytruda from having full efficacy but since the drugs aren't contraindicated and no one really seems to know the right level of steroids during immunotherapy, it makes sense to keep asking about if this is a possibility for your son.
Hoping he begins to feel better soon and that something starts working for him!
Best wishes,
Carrie
-
- September 3, 2015 at 8:15 am
Hi Sarah,
Besides my Dad taking marinol for appetite, I am not an expert on cannabis. But, marinol has proven very effective for him and he is finally gaining weight. Regarding the Keytruda, my Dad also experienced swelling of his brain mets after his first Keytruda infusion and eventually ended up back on steroids (after nearly starving himself to death over the intervening weeks). In any case, he doing much better now and is weaned down to 6 mg of dexamethasone per day. The doctor is hoping to get him to 2 mg per day of dex (which is almost equivalent to 10 mg of prednisone – which would be an okay steroids level while on Keytruda according to the melanoma specialist in Seattle/at SCCA). Long story short, our local oncologist gave him a half dosage of Keytruda yesterday and we are going to monitor how he reacts (and if his brain mets begin to swell again). Then, as he continues to wean off the steroids, he may get the other half of the dosage. Are your doctors waiting to fully wean your son off the steroids or would they be willing to do Keytruda while he is still on some steroids? From what I understand, the steroids will prevent the Keytruda from having full efficacy but since the drugs aren't contraindicated and no one really seems to know the right level of steroids during immunotherapy, it makes sense to keep asking about if this is a possibility for your son.
Hoping he begins to feel better soon and that something starts working for him!
Best wishes,
Carrie
-
- September 3, 2015 at 7:53 am
So sorry for the loss of your Dad. Praying for you and your family now.
All the best,
Carrie
-
- September 3, 2015 at 7:53 am
So sorry for the loss of your Dad. Praying for you and your family now.
All the best,
Carrie
-
- September 3, 2015 at 7:53 am
So sorry for the loss of your Dad. Praying for you and your family now.
All the best,
Carrie
-
- August 20, 2015 at 6:07 am
Hi Artie and Sarah,
I found this trial very interesting so talked to Alisha yesterday at the University of Chicago. At this time, however, they are not taking any patients into the clinical trial with brain mets. That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now. She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now. Otherwise, there wasn't much for those with brain mets there…
Good luck with all! Hoping one of the immunotherapy treatment paths works for you!
Carrie
-
- August 20, 2015 at 6:07 am
Hi Artie and Sarah,
I found this trial very interesting so talked to Alisha yesterday at the University of Chicago. At this time, however, they are not taking any patients into the clinical trial with brain mets. That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now. She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now. Otherwise, there wasn't much for those with brain mets there…
Good luck with all! Hoping one of the immunotherapy treatment paths works for you!
Carrie
-
- August 20, 2015 at 6:07 am
Hi Artie and Sarah,
I found this trial very interesting so talked to Alisha yesterday at the University of Chicago. At this time, however, they are not taking any patients into the clinical trial with brain mets. That will come in a later phase – likely in 6ish months from now – which isn't much help to all of us with brain mets now. She also has a trial at University of Chicago which tests insulin-like growth hormone and those with stable brain mets are eligible, but it requires a trip out to Chicago which I'm not sure that we are up for right now. Otherwise, there wasn't much for those with brain mets there…
Good luck with all! Hoping one of the immunotherapy treatment paths works for you!
Carrie
-
- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
-
- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
-
- August 11, 2015 at 11:30 pm
Hi all,
Thank you for the quick responses and ideas today. The brain tumor neurosurgeon at the University of Washington (Dr. Silbergeld) just told us that surgery is not a viable option. Dad has three main mets in his brain – and undergoing three craniotomies would be tough plus removing any one of them would like cause more problems with the others. Needless to say, we are devastated. Based on the earlier post regarding nivo, we have reached out the oncology team to see if there would be a way for Dad to stay on the pembro while still taking steroids. We believe that Dr. Thompson at SCCA (our melanoma specialist) told us that you could be on pembro while taking some amount of low-dose steroids. Need to figure out what that was and if that is still an option. He is getting marinol (medical marijuana) twice per day and did eat a bit of pudding today. So, that's good… But, if pembro isn't an option, we are stuck with palliative care/hospice. Hoping that I won't be asking for hospice advice quite yet but we'll see!
Thank you as always,
Carrie
-
- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
-
- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
-
- August 10, 2015 at 7:30 am
Thank you, all! Artie and Mat, I can't believe that you are both online but I am so appreciative of your advice and expertise. Dad is on dexamethasone – and now at 8 mg for three times per day. After reading your posts this morning, we did get up the nerve to push to get him moved out of our semi-rural hospital to the University of Washington – and fortunately the doctor seeing him at our local hospital agreed. He is now at the UW and we explore our options tomorrow. He is completely not himself, very agitated from the steroids, and so we are hoping for a few non-hospice options tomorrow.
Thank you again for all!
Carrie
-
