› Forums › General Melanoma Community › Dabrafenib side effects
- This topic has 24 replies, 4 voices, and was last updated 10 years, 2 months ago by KYDonna.
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- February 9, 2014 at 2:18 pm
Hi,
I'm on the BRAF/MEK combo, not Debrafenib alone, which changes the side effect profile some. Increasing your blood sugar is on the list of possible side effects for Debrafenib, so its definitely possible. I assume your husband was not a diabetic (type I or II) before starting the meds? Have you or your husband spoken with your doctor about it? I would think/hope they could give you some suggestions, especially if he's vomiting. If you're worried about his glucose though don't let them just give him something for nausea. I would think an early morning blood glucose test would be easy enough for them get some answers and forumulate a plan.
Good luck
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- February 9, 2014 at 2:18 pm
Hi,
I'm on the BRAF/MEK combo, not Debrafenib alone, which changes the side effect profile some. Increasing your blood sugar is on the list of possible side effects for Debrafenib, so its definitely possible. I assume your husband was not a diabetic (type I or II) before starting the meds? Have you or your husband spoken with your doctor about it? I would think/hope they could give you some suggestions, especially if he's vomiting. If you're worried about his glucose though don't let them just give him something for nausea. I would think an early morning blood glucose test would be easy enough for them get some answers and forumulate a plan.
Good luck
-
- February 9, 2014 at 4:39 pm
That's another thing I've wondered-why Darryel's (hubby's) onc decided against the combo treatment. I try to be a good advocate, but there is SO much information & so many advances in melanoma treatment now (which is a FANTASTIC thing!) that I don't feel like I have anywhere near enough information!!
Anyway, as far as we know, there were no blood sugar problems prior to Tafinlar. We were scheduled to go back to onc this coming Thursday, but they are apparently having a scheduling conflict, so that might be pushed back. When we do go, I will definitely ask!
Is the BRAF/MEK combo working well for you?
Thank you for your suggestions-I appreciate them very much!!
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- February 9, 2014 at 6:00 pm
Just saw the head oncologist at Moffitt, Dr. Weber, say that in his opinion the sooner someone starts on the combo therapy (specifically Tafinlar and Mekist) as opposed to Tafinlar alone, the better. He said if he was a patient he would get the combo. Specifically by blocking 2 pathways it had a better chance at overcoming resistance for longer. If you and your husband want to follow up on that… you could try Dr. Weber's email contact on this page — http://moffitt.org/research–clinical-trials/individual-researchers/jeffrey-s–weber-md-phd. You can also see Tim Turnhams' post here from the same lecture I went to on the topic of the combo being in general better — http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates
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- February 9, 2014 at 6:00 pm
Just saw the head oncologist at Moffitt, Dr. Weber, say that in his opinion the sooner someone starts on the combo therapy (specifically Tafinlar and Mekist) as opposed to Tafinlar alone, the better. He said if he was a patient he would get the combo. Specifically by blocking 2 pathways it had a better chance at overcoming resistance for longer. If you and your husband want to follow up on that… you could try Dr. Weber's email contact on this page — http://moffitt.org/research–clinical-trials/individual-researchers/jeffrey-s–weber-md-phd. You can also see Tim Turnhams' post here from the same lecture I went to on the topic of the combo being in general better — http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates
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- February 9, 2014 at 6:00 pm
Just saw the head oncologist at Moffitt, Dr. Weber, say that in his opinion the sooner someone starts on the combo therapy (specifically Tafinlar and Mekist) as opposed to Tafinlar alone, the better. He said if he was a patient he would get the combo. Specifically by blocking 2 pathways it had a better chance at overcoming resistance for longer. If you and your husband want to follow up on that… you could try Dr. Weber's email contact on this page — http://moffitt.org/research–clinical-trials/individual-researchers/jeffrey-s–weber-md-phd. You can also see Tim Turnhams' post here from the same lecture I went to on the topic of the combo being in general better — http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/some-treatment-option-updates
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- February 10, 2014 at 3:31 am
I've been on them for close to 2 months and yes, they are working. I started noticing a reduction in the size of my subcutaneous (under the skin) tumors in about a week. I just had a scan about a week ago and my internal tumors have all shrunk by at least 50%. Hopefully everything will hold until something more permanant comes along.
I've also had no noticable side effects since starting the combo (one of the benefits of the combo vs a single drug). I would definitely ask for an explanation about why he's not on the combo. Some doctors seem to want to start the BRAF first, then add in the MEK a little later, but I started them both at the same time and haven't had any problems. To my knowledge there really isn't any drawback to adding the MEK- it increases the overall average length of time before resistance occurs compared to the BRAF alone by at least 3 months and reduces the number and severity of side effects for most people.
There is so much out there and it's changing so fast I'm not sure any of us ever feels like we have enough information. just don't be afraid to ask questions or make suggestions- his doctor should be able to explain why he's making the decisions he's making and why he thinks one plan is better than another.
Good luck
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- February 10, 2014 at 3:31 am
I've been on them for close to 2 months and yes, they are working. I started noticing a reduction in the size of my subcutaneous (under the skin) tumors in about a week. I just had a scan about a week ago and my internal tumors have all shrunk by at least 50%. Hopefully everything will hold until something more permanant comes along.
I've also had no noticable side effects since starting the combo (one of the benefits of the combo vs a single drug). I would definitely ask for an explanation about why he's not on the combo. Some doctors seem to want to start the BRAF first, then add in the MEK a little later, but I started them both at the same time and haven't had any problems. To my knowledge there really isn't any drawback to adding the MEK- it increases the overall average length of time before resistance occurs compared to the BRAF alone by at least 3 months and reduces the number and severity of side effects for most people.
There is so much out there and it's changing so fast I'm not sure any of us ever feels like we have enough information. just don't be afraid to ask questions or make suggestions- his doctor should be able to explain why he's making the decisions he's making and why he thinks one plan is better than another.
Good luck
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- February 11, 2014 at 4:35 pm
ecc-
Thank you so much for sharing your story!! That gives me a lot of hope!! Definitely going to ask about Mekinist. I think Darryel's onc was thinking we'd hold that card to play later, but sounds like we should combine them! (Darryel would definitely appreciate less side effects!!)
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- February 11, 2014 at 4:35 pm
ecc-
Thank you so much for sharing your story!! That gives me a lot of hope!! Definitely going to ask about Mekinist. I think Darryel's onc was thinking we'd hold that card to play later, but sounds like we should combine them! (Darryel would definitely appreciate less side effects!!)
-
- February 11, 2014 at 4:35 pm
ecc-
Thank you so much for sharing your story!! That gives me a lot of hope!! Definitely going to ask about Mekinist. I think Darryel's onc was thinking we'd hold that card to play later, but sounds like we should combine them! (Darryel would definitely appreciate less side effects!!)
-
- February 10, 2014 at 3:31 am
I've been on them for close to 2 months and yes, they are working. I started noticing a reduction in the size of my subcutaneous (under the skin) tumors in about a week. I just had a scan about a week ago and my internal tumors have all shrunk by at least 50%. Hopefully everything will hold until something more permanant comes along.
I've also had no noticable side effects since starting the combo (one of the benefits of the combo vs a single drug). I would definitely ask for an explanation about why he's not on the combo. Some doctors seem to want to start the BRAF first, then add in the MEK a little later, but I started them both at the same time and haven't had any problems. To my knowledge there really isn't any drawback to adding the MEK- it increases the overall average length of time before resistance occurs compared to the BRAF alone by at least 3 months and reduces the number and severity of side effects for most people.
There is so much out there and it's changing so fast I'm not sure any of us ever feels like we have enough information. just don't be afraid to ask questions or make suggestions- his doctor should be able to explain why he's making the decisions he's making and why he thinks one plan is better than another.
Good luck
-
- February 9, 2014 at 4:39 pm
That's another thing I've wondered-why Darryel's (hubby's) onc decided against the combo treatment. I try to be a good advocate, but there is SO much information & so many advances in melanoma treatment now (which is a FANTASTIC thing!) that I don't feel like I have anywhere near enough information!!
Anyway, as far as we know, there were no blood sugar problems prior to Tafinlar. We were scheduled to go back to onc this coming Thursday, but they are apparently having a scheduling conflict, so that might be pushed back. When we do go, I will definitely ask!
Is the BRAF/MEK combo working well for you?
Thank you for your suggestions-I appreciate them very much!!
-
- February 9, 2014 at 4:39 pm
That's another thing I've wondered-why Darryel's (hubby's) onc decided against the combo treatment. I try to be a good advocate, but there is SO much information & so many advances in melanoma treatment now (which is a FANTASTIC thing!) that I don't feel like I have anywhere near enough information!!
Anyway, as far as we know, there were no blood sugar problems prior to Tafinlar. We were scheduled to go back to onc this coming Thursday, but they are apparently having a scheduling conflict, so that might be pushed back. When we do go, I will definitely ask!
Is the BRAF/MEK combo working well for you?
Thank you for your suggestions-I appreciate them very much!!
-
- February 9, 2014 at 2:18 pm
Hi,
I'm on the BRAF/MEK combo, not Debrafenib alone, which changes the side effect profile some. Increasing your blood sugar is on the list of possible side effects for Debrafenib, so its definitely possible. I assume your husband was not a diabetic (type I or II) before starting the meds? Have you or your husband spoken with your doctor about it? I would think/hope they could give you some suggestions, especially if he's vomiting. If you're worried about his glucose though don't let them just give him something for nausea. I would think an early morning blood glucose test would be easy enough for them get some answers and forumulate a plan.
Good luck
-
- February 9, 2014 at 3:23 pm
I think you are asking an important question. Could you go to a pharmacy and get a blood glucose monitor? They usually cost less than $30 and it might put your mind at ease. And if his glucose is unusually high or low that could be important information to share with his doctor.
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- February 9, 2014 at 3:23 pm
I think you are asking an important question. Could you go to a pharmacy and get a blood glucose monitor? They usually cost less than $30 and it might put your mind at ease. And if his glucose is unusually high or low that could be important information to share with his doctor.
-
- February 9, 2014 at 3:23 pm
I think you are asking an important question. Could you go to a pharmacy and get a blood glucose monitor? They usually cost less than $30 and it might put your mind at ease. And if his glucose is unusually high or low that could be important information to share with his doctor.
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