› Forums › General Melanoma Community › What’ next
- This topic has 18 replies, 3 voices, and was last updated 12 years, 6 months ago by
GAngel.
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- August 2, 2013 at 11:47 pm
Ok my mom started zel early July 4 tabs 2 times a day and get a grade 4 itchy rash off until July 21 restarted 3 tabs 2 times a day after 5 days she has been taken off due to breathing difficulties and flu like symptoms until August 8 then she will try 2 tabs 2 a day. Not sure what is next if she can’t do zel. I asked about switching her to dabrafenib and they are checking to see if it is available in our area and if her insurance co is willing to pay.
We had to go to a private organization for help with the copay for the zel .does anyone have any information on the cost of dabrafenib.or any idea what our next step should be.
We don’t have a melanoma specialist close enough to see and she is unwilling to travel. But thankfully her oncologist is good and willing to check out everything I ask about.
Thank you all so much we would have not made it this far without all of you.
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- August 3, 2013 at 9:37 am
Hello, I'm sorry to hear that your mom is having such difficulty with Zelboraf. My husband (diagnosed at Stage IV in February 2013 with mets in liver) also suffered severe side effects that resulted in reducing his dosage to 3 pills twice a day and one week on and one week off dosing schedule. This was working great for him since March 2013 and he went from 14 tumors in his liver down to only 5 much smaller ones. As of his last Pet scan a week ago those tumors are still shrinking and there is no evidence of any new disease anywhere else in his body. The intermittent dosing has only been tested on mice (and my husbands Doctor said it had been tested on horses also) but the mice lived longer when therapy was interrupted and then restarted. You can find the article on the University of San Francisco website by searching for "Drug Resistant Tumors shrink when Therapy is Interrupted".
Anyway, when the drugs Debrafenib and Mekinist were approved by FDA, my husband's oncologist suggested that he try this combo due to the fact that most patients were having fewer side effects on the combo and better results. I'm sorry but I don't know the cost of Debrafenib, however, I can find out and get back to you.
Love and blessings to you and your mom,
Gina
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- August 3, 2013 at 9:37 am
Hello, I'm sorry to hear that your mom is having such difficulty with Zelboraf. My husband (diagnosed at Stage IV in February 2013 with mets in liver) also suffered severe side effects that resulted in reducing his dosage to 3 pills twice a day and one week on and one week off dosing schedule. This was working great for him since March 2013 and he went from 14 tumors in his liver down to only 5 much smaller ones. As of his last Pet scan a week ago those tumors are still shrinking and there is no evidence of any new disease anywhere else in his body. The intermittent dosing has only been tested on mice (and my husbands Doctor said it had been tested on horses also) but the mice lived longer when therapy was interrupted and then restarted. You can find the article on the University of San Francisco website by searching for "Drug Resistant Tumors shrink when Therapy is Interrupted".
Anyway, when the drugs Debrafenib and Mekinist were approved by FDA, my husband's oncologist suggested that he try this combo due to the fact that most patients were having fewer side effects on the combo and better results. I'm sorry but I don't know the cost of Debrafenib, however, I can find out and get back to you.
Love and blessings to you and your mom,
Gina
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- August 3, 2013 at 9:37 am
Hello, I'm sorry to hear that your mom is having such difficulty with Zelboraf. My husband (diagnosed at Stage IV in February 2013 with mets in liver) also suffered severe side effects that resulted in reducing his dosage to 3 pills twice a day and one week on and one week off dosing schedule. This was working great for him since March 2013 and he went from 14 tumors in his liver down to only 5 much smaller ones. As of his last Pet scan a week ago those tumors are still shrinking and there is no evidence of any new disease anywhere else in his body. The intermittent dosing has only been tested on mice (and my husbands Doctor said it had been tested on horses also) but the mice lived longer when therapy was interrupted and then restarted. You can find the article on the University of San Francisco website by searching for "Drug Resistant Tumors shrink when Therapy is Interrupted".
Anyway, when the drugs Debrafenib and Mekinist were approved by FDA, my husband's oncologist suggested that he try this combo due to the fact that most patients were having fewer side effects on the combo and better results. I'm sorry but I don't know the cost of Debrafenib, however, I can find out and get back to you.
Love and blessings to you and your mom,
Gina
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- August 3, 2013 at 3:10 pm
Ask about taking prednisone with Zel rather than lower the dosage to 2×2, or the intermittent dosing. I was on Pred the entire time I took the drug and my Dr was firm with me that 2×2 was not an effective option. Unfortunately I did find the intermittent dosing made the side effects worse, but I had lots of problems, you can check my profile. I did get 11 mos out of it though it was not easy!! -
- August 3, 2013 at 3:10 pm
Ask about taking prednisone with Zel rather than lower the dosage to 2×2, or the intermittent dosing. I was on Pred the entire time I took the drug and my Dr was firm with me that 2×2 was not an effective option. Unfortunately I did find the intermittent dosing made the side effects worse, but I had lots of problems, you can check my profile. I did get 11 mos out of it though it was not easy!! -
- August 3, 2013 at 3:10 pm
Ask about taking prednisone with Zel rather than lower the dosage to 2×2, or the intermittent dosing. I was on Pred the entire time I took the drug and my Dr was firm with me that 2×2 was not an effective option. Unfortunately I did find the intermittent dosing made the side effects worse, but I had lots of problems, you can check my profile. I did get 11 mos out of it though it was not easy!! -
- August 4, 2013 at 11:41 am
Her oncologist is reluctant to start any kind of steroid treatment due to a bad reaction she had while being on prednisone when she was having chemo treatments for breast cancer. He said any kind of steroid use would have to be done in hospital.
Ok she is 71 years old and doesn’t want to live in a hospital bed or be sick constantly from taking a pill that is suppose to help you. A year go she was out square dancing 3 times a week and taking care or her home and land herself. She just wants the disease to go away so she can get back to being her. then there are some days she back with the program and on board to try nd fight this monster.
I feel so helpless and frustrated. -
- August 4, 2013 at 11:58 am
Thank you so much for your reply some times it’s seems like a lonely confusing world out here. and not being able to convince her to travel to a bigger city to see a specialist most of my learning and understanding of the treatments,side effects,family effects,personal effects and everything else that we have to deal with is done here.
I read the post every day and I believe I have read all of the profiles. And find myself retreading whenever I need a hug and a little understanding. Again THANK YOU! -
- August 4, 2013 at 5:03 pm
We all feel that way some times – we all wish we had our disease free bodies back.Hang in there and just keep looking forward., -
- August 5, 2013 at 9:47 am
No problem, I know the feeling…hang in there! My husband did try zel and steroids but that did not help much at all so after a week he no longer took it. That was in the beginning when he was at full dosage of zel so when steroid didn't help he went to 3 pills twice a day. As you will see everyone's experience is different so the best thing to do is gather info and present it to her oncologist for a recommendation.
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- August 4, 2013 at 11:41 am
Her oncologist is reluctant to start any kind of steroid treatment due to a bad reaction she had while being on prednisone when she was having chemo treatments for breast cancer. He said any kind of steroid use would have to be done in hospital.
Ok she is 71 years old and doesn’t want to live in a hospital bed or be sick constantly from taking a pill that is suppose to help you. A year go she was out square dancing 3 times a week and taking care or her home and land herself. She just wants the disease to go away so she can get back to being her. then there are some days she back with the program and on board to try nd fight this monster.
I feel so helpless and frustrated. -
- August 4, 2013 at 11:41 am
Her oncologist is reluctant to start any kind of steroid treatment due to a bad reaction she had while being on prednisone when she was having chemo treatments for breast cancer. He said any kind of steroid use would have to be done in hospital.
Ok she is 71 years old and doesn’t want to live in a hospital bed or be sick constantly from taking a pill that is suppose to help you. A year go she was out square dancing 3 times a week and taking care or her home and land herself. She just wants the disease to go away so she can get back to being her. then there are some days she back with the program and on board to try nd fight this monster.
I feel so helpless and frustrated. -
- August 4, 2013 at 11:58 am
Thank you so much for your reply some times it’s seems like a lonely confusing world out here. and not being able to convince her to travel to a bigger city to see a specialist most of my learning and understanding of the treatments,side effects,family effects,personal effects and everything else that we have to deal with is done here.
I read the post every day and I believe I have read all of the profiles. And find myself retreading whenever I need a hug and a little understanding. Again THANK YOU! -
- August 4, 2013 at 11:58 am
Thank you so much for your reply some times it’s seems like a lonely confusing world out here. and not being able to convince her to travel to a bigger city to see a specialist most of my learning and understanding of the treatments,side effects,family effects,personal effects and everything else that we have to deal with is done here.
I read the post every day and I believe I have read all of the profiles. And find myself retreading whenever I need a hug and a little understanding. Again THANK YOU! -
- August 4, 2013 at 5:03 pm
We all feel that way some times – we all wish we had our disease free bodies back.Hang in there and just keep looking forward., -
- August 4, 2013 at 5:03 pm
We all feel that way some times – we all wish we had our disease free bodies back.Hang in there and just keep looking forward., -
- August 5, 2013 at 9:47 am
No problem, I know the feeling…hang in there! My husband did try zel and steroids but that did not help much at all so after a week he no longer took it. That was in the beginning when he was at full dosage of zel so when steroid didn't help he went to 3 pills twice a day. As you will see everyone's experience is different so the best thing to do is gather info and present it to her oncologist for a recommendation.
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- August 5, 2013 at 9:47 am
No problem, I know the feeling…hang in there! My husband did try zel and steroids but that did not help much at all so after a week he no longer took it. That was in the beginning when he was at full dosage of zel so when steroid didn't help he went to 3 pills twice a day. As you will see everyone's experience is different so the best thing to do is gather info and present it to her oncologist for a recommendation.
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