› Forums › General Melanoma Community › A week into Zelboraf, doing good I think…
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mmdiehl.
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- March 14, 2012 at 4:27 am
Tomorrow I'll be one week into Zelboraf. So far so good I think. No noticeable side effects yet, possibly some fatigue and weakness, but I've been experiencing that quite a bit the last two months as my sleep schedule and normal activity have been out of sorts, and with the other two meds I'm on. I've been avoiding the sun as recommended. I think being on the drug has done a lot for me mentally, doing something proactive has me feeling pretty optimistic and hopeful.. I've been feeling close to my ol' self the majority of this last week.
Tomorrow I'll be one week into Zelboraf. So far so good I think. No noticeable side effects yet, possibly some fatigue and weakness, but I've been experiencing that quite a bit the last two months as my sleep schedule and normal activity have been out of sorts, and with the other two meds I'm on. I've been avoiding the sun as recommended. I think being on the drug has done a lot for me mentally, doing something proactive has me feeling pretty optimistic and hopeful.. I've been feeling close to my ol' self the majority of this last week. This morning though about 20-30 mins after my dose, right before breakfast, I suddenly felt fatigued and kind of shaky. Having two seizures a month and a half ago, the fear of having another or not knowing this feeling I was experiencing.. paranoia and anxiety arose and I think was making it worse. I stayed calm, breathed deeply and the feeling faded after a few minutes, but it's kind of left me shaken me up today and has made me a bit nervous. I read that there is a rare side effect with Zelboraf that can effect you heart rate or something that can lead to dizziness and fainting. Sounds scary… not helping with this nervousness I was just getting over… But hopefully it wasn't that.. maybe it was nothing.. maybe it was a mini anxiety attack, maybe I didn't drink enough water with the dose, or maybe it was from a lack of a good nights sleep and an empty stomach.. I don't know. :/ Anyway, besides this little thing today, I'm feeling pretty good all things considered. I've got an appointment with my oncologist in a week to schedule scans and what not. Hopefully they'll say something good. And that's it for now. As always, thanks for the support, thoughts, and lending listening ears from time to time. It is all so appreciated. -Kevin
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- March 14, 2012 at 6:32 am
My dad has been on this drug for 7 months and it's working on him so why not you? It might not have the side effects of some treatments but it's still a pretty hard core drug, so when you feel fatigued take it easy, and yes get sleep. It's a stressful time waiting to see if things are working but there's a great chance that it is.
Thinking of you and hoping for some great scan results, let us know how you go.
Stay positive and take care.
Nahmi from Melbourne
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- March 14, 2012 at 11:57 am
Hi Kevin
So glad you have started. Hope you feel the effects real soon. I am sorry about your anxiety I understand why you have it and hope you can channel all the positive thoughts coming from us to you and know this will work for you ! Keep us posted. Good for you watch out for sun.Also I did start eating four or five small meals a day to help my stomach those pills are BIG
Take care
Laurie from maine -
- March 14, 2012 at 11:57 am
Hi Kevin
So glad you have started. Hope you feel the effects real soon. I am sorry about your anxiety I understand why you have it and hope you can channel all the positive thoughts coming from us to you and know this will work for you ! Keep us posted. Good for you watch out for sun.Also I did start eating four or five small meals a day to help my stomach those pills are BIG
Take care
Laurie from maine -
- March 14, 2012 at 11:57 am
Hi Kevin
So glad you have started. Hope you feel the effects real soon. I am sorry about your anxiety I understand why you have it and hope you can channel all the positive thoughts coming from us to you and know this will work for you ! Keep us posted. Good for you watch out for sun.Also I did start eating four or five small meals a day to help my stomach those pills are BIG
Take care
Laurie from maine
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- March 14, 2012 at 6:32 am
My dad has been on this drug for 7 months and it's working on him so why not you? It might not have the side effects of some treatments but it's still a pretty hard core drug, so when you feel fatigued take it easy, and yes get sleep. It's a stressful time waiting to see if things are working but there's a great chance that it is.
Thinking of you and hoping for some great scan results, let us know how you go.
Stay positive and take care.
Nahmi from Melbourne
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- March 14, 2012 at 6:32 am
My dad has been on this drug for 7 months and it's working on him so why not you? It might not have the side effects of some treatments but it's still a pretty hard core drug, so when you feel fatigued take it easy, and yes get sleep. It's a stressful time waiting to see if things are working but there's a great chance that it is.
Thinking of you and hoping for some great scan results, let us know how you go.
Stay positive and take care.
Nahmi from Melbourne
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- March 14, 2012 at 12:31 pm
That shaky feeling you had could have a number of causes: maybe you had a drop in blood sugar level, maybe it was a Zelboraf side effect. Also, when you panic you start to breathe fasterer, which can cause you to feel light headed and dizzy, and make your heart race. It has something to do with inhaling too much oxygen too quickly.
You did the right thing by doing some deep breathing. Apparently the sensation subsisded so that's a good thing. You might also want to have a small paper bag on hand and breathe deeply into it for a few minutes to see if you can make that sensation go away. Pulling your shirt up over your nose and mouth, holding it in place by cupping your hands over the nose and mouth, and breathing slowly and deeply will also do in a pinch.
If you're feeling good today, that's great! Focus on that good feeling. You'll be seeing the doc in only a week and that's also a good thing. You definitely want to bring this up at your visit and see what the doc recommends. If he/she deterimines that your experiencing panic/anxiety attacks, know that those are very mangeable. Blood sugar drops are also very mangeable. If this is a Zelboraf side effect, I'm sure your doc will have a few tricks up his/her sleeve on how to manage it.
Most importantly, document what's going on so you can give your doc an accurate account of what's happening.
Hang in there!
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- March 14, 2012 at 12:31 pm
That shaky feeling you had could have a number of causes: maybe you had a drop in blood sugar level, maybe it was a Zelboraf side effect. Also, when you panic you start to breathe fasterer, which can cause you to feel light headed and dizzy, and make your heart race. It has something to do with inhaling too much oxygen too quickly.
You did the right thing by doing some deep breathing. Apparently the sensation subsisded so that's a good thing. You might also want to have a small paper bag on hand and breathe deeply into it for a few minutes to see if you can make that sensation go away. Pulling your shirt up over your nose and mouth, holding it in place by cupping your hands over the nose and mouth, and breathing slowly and deeply will also do in a pinch.
If you're feeling good today, that's great! Focus on that good feeling. You'll be seeing the doc in only a week and that's also a good thing. You definitely want to bring this up at your visit and see what the doc recommends. If he/she deterimines that your experiencing panic/anxiety attacks, know that those are very mangeable. Blood sugar drops are also very mangeable. If this is a Zelboraf side effect, I'm sure your doc will have a few tricks up his/her sleeve on how to manage it.
Most importantly, document what's going on so you can give your doc an accurate account of what's happening.
Hang in there!
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- March 14, 2012 at 12:31 pm
That shaky feeling you had could have a number of causes: maybe you had a drop in blood sugar level, maybe it was a Zelboraf side effect. Also, when you panic you start to breathe fasterer, which can cause you to feel light headed and dizzy, and make your heart race. It has something to do with inhaling too much oxygen too quickly.
You did the right thing by doing some deep breathing. Apparently the sensation subsisded so that's a good thing. You might also want to have a small paper bag on hand and breathe deeply into it for a few minutes to see if you can make that sensation go away. Pulling your shirt up over your nose and mouth, holding it in place by cupping your hands over the nose and mouth, and breathing slowly and deeply will also do in a pinch.
If you're feeling good today, that's great! Focus on that good feeling. You'll be seeing the doc in only a week and that's also a good thing. You definitely want to bring this up at your visit and see what the doc recommends. If he/she deterimines that your experiencing panic/anxiety attacks, know that those are very mangeable. Blood sugar drops are also very mangeable. If this is a Zelboraf side effect, I'm sure your doc will have a few tricks up his/her sleeve on how to manage it.
Most importantly, document what's going on so you can give your doc an accurate account of what's happening.
Hang in there!
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- March 14, 2012 at 6:10 pm
Kevin..Glad you are Braf +.That means that Zelboraf WILL work for you. Side effects are different for individuals.Some side effects come and go.I have some and my joint pain is very seldom noticeable.Other like diarrhea is almost like clock work. Comes approx every 2 weeks and lasts 1 to 2 days.Other side effects I consider the price we pay form the benefit we get.Hope it works just as well for you as it does me.Staying on it for a lifetime of living. My prayers go out to you. Al
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- March 14, 2012 at 6:10 pm
Kevin..Glad you are Braf +.That means that Zelboraf WILL work for you. Side effects are different for individuals.Some side effects come and go.I have some and my joint pain is very seldom noticeable.Other like diarrhea is almost like clock work. Comes approx every 2 weeks and lasts 1 to 2 days.Other side effects I consider the price we pay form the benefit we get.Hope it works just as well for you as it does me.Staying on it for a lifetime of living. My prayers go out to you. Al
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- March 14, 2012 at 7:28 pm
Kevin,
I can imagine the terror of having seizures…i am sorry that you have had this ordeal…i am hoping zelboraf works…i have had a lot of probs with zelboraf…but i have enzyme defiencies so i was overdosing on recommended doses…i got my dose reduced and other than skin rashes and arthragia doing OK, oh, and a big squamous on my nose…if you are experiencing any side effects tell the doctor…they can do stuff for you like pred creams and the like…it takes a few months for side effects to subside…make sure you are seeing a derm once a month…this is a good drug because it is 80% effective in brafys and it crosses brain barrier…stretching (like yoga or tai chi ) helps arthragia, so do hot baths…ibuprofin (sp) helps reduce fevers and body aches…exercise and regular sleep habits important to keep strength up…even if only 10 min a time…some people get keratosis pilaris-chicken skin-the derm will tell you how to manage…also they advise that you wear sun protection and not go out in sun until after 4p…i know that kinda sucks…actually, i DO go out in sun sometimes without protection and didn't get anything…but, don't be stupid like me…protect eyes with good sunglasses…maybe check out UV protection clothing
boots
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- March 14, 2012 at 7:28 pm
Kevin,
I can imagine the terror of having seizures…i am sorry that you have had this ordeal…i am hoping zelboraf works…i have had a lot of probs with zelboraf…but i have enzyme defiencies so i was overdosing on recommended doses…i got my dose reduced and other than skin rashes and arthragia doing OK, oh, and a big squamous on my nose…if you are experiencing any side effects tell the doctor…they can do stuff for you like pred creams and the like…it takes a few months for side effects to subside…make sure you are seeing a derm once a month…this is a good drug because it is 80% effective in brafys and it crosses brain barrier…stretching (like yoga or tai chi ) helps arthragia, so do hot baths…ibuprofin (sp) helps reduce fevers and body aches…exercise and regular sleep habits important to keep strength up…even if only 10 min a time…some people get keratosis pilaris-chicken skin-the derm will tell you how to manage…also they advise that you wear sun protection and not go out in sun until after 4p…i know that kinda sucks…actually, i DO go out in sun sometimes without protection and didn't get anything…but, don't be stupid like me…protect eyes with good sunglasses…maybe check out UV protection clothing
boots
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- March 14, 2012 at 7:28 pm
Kevin,
I can imagine the terror of having seizures…i am sorry that you have had this ordeal…i am hoping zelboraf works…i have had a lot of probs with zelboraf…but i have enzyme defiencies so i was overdosing on recommended doses…i got my dose reduced and other than skin rashes and arthragia doing OK, oh, and a big squamous on my nose…if you are experiencing any side effects tell the doctor…they can do stuff for you like pred creams and the like…it takes a few months for side effects to subside…make sure you are seeing a derm once a month…this is a good drug because it is 80% effective in brafys and it crosses brain barrier…stretching (like yoga or tai chi ) helps arthragia, so do hot baths…ibuprofin (sp) helps reduce fevers and body aches…exercise and regular sleep habits important to keep strength up…even if only 10 min a time…some people get keratosis pilaris-chicken skin-the derm will tell you how to manage…also they advise that you wear sun protection and not go out in sun until after 4p…i know that kinda sucks…actually, i DO go out in sun sometimes without protection and didn't get anything…but, don't be stupid like me…protect eyes with good sunglasses…maybe check out UV protection clothing
boots
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- March 14, 2012 at 7:31 pm
Kevin,
i forgot to mention that celexa helped my anxiety a lot…no more panic attacks
boots
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- March 14, 2012 at 7:31 pm
Kevin,
i forgot to mention that celexa helped my anxiety a lot…no more panic attacks
boots
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- March 14, 2012 at 7:31 pm
Kevin,
i forgot to mention that celexa helped my anxiety a lot…no more panic attacks
boots
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- March 14, 2012 at 6:10 pm
Kevin..Glad you are Braf +.That means that Zelboraf WILL work for you. Side effects are different for individuals.Some side effects come and go.I have some and my joint pain is very seldom noticeable.Other like diarrhea is almost like clock work. Comes approx every 2 weeks and lasts 1 to 2 days.Other side effects I consider the price we pay form the benefit we get.Hope it works just as well for you as it does me.Staying on it for a lifetime of living. My prayers go out to you. Al
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- March 15, 2012 at 1:15 am
So glad you have started the Zelboraf and even more happy to hear that this is helping you feel proactive and optimistic – you always have such a great spirit. It's only natural you might feel anxious when some of those sensations come up given what you have been through but it sounds like you did all the right things to calm things down a litlle.
Sending lots of prayers and good thoughts that you will have promising results! You have lots of people cheering you on Kevin .. .
Best regards,
Mary
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- March 15, 2012 at 1:15 am
So glad you have started the Zelboraf and even more happy to hear that this is helping you feel proactive and optimistic – you always have such a great spirit. It's only natural you might feel anxious when some of those sensations come up given what you have been through but it sounds like you did all the right things to calm things down a litlle.
Sending lots of prayers and good thoughts that you will have promising results! You have lots of people cheering you on Kevin .. .
Best regards,
Mary
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- March 15, 2012 at 1:15 am
So glad you have started the Zelboraf and even more happy to hear that this is helping you feel proactive and optimistic – you always have such a great spirit. It's only natural you might feel anxious when some of those sensations come up given what you have been through but it sounds like you did all the right things to calm things down a litlle.
Sending lots of prayers and good thoughts that you will have promising results! You have lots of people cheering you on Kevin .. .
Best regards,
Mary
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- March 17, 2012 at 4:44 am
I just wanted to thank you all, for your replies, your taking time to share knowledge and information with me. It does wonders to read well wishes and positive stories from people in similar situations. Really really helps put a worried mind at rest from time to time. I'll say "when" and not "if"… things get better for me, I hope my stories and insights will benefit others the way yours have me. Thank you again… -Kevin
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- March 17, 2012 at 4:44 am
I just wanted to thank you all, for your replies, your taking time to share knowledge and information with me. It does wonders to read well wishes and positive stories from people in similar situations. Really really helps put a worried mind at rest from time to time. I'll say "when" and not "if"… things get better for me, I hope my stories and insights will benefit others the way yours have me. Thank you again… -Kevin
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- March 17, 2012 at 4:44 am
I just wanted to thank you all, for your replies, your taking time to share knowledge and information with me. It does wonders to read well wishes and positive stories from people in similar situations. Really really helps put a worried mind at rest from time to time. I'll say "when" and not "if"… things get better for me, I hope my stories and insights will benefit others the way yours have me. Thank you again… -Kevin
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- March 17, 2012 at 11:57 pm
Kevin,
I would like to wish you the best of luck on Zelboraf. My husband has been taking this drug for just over a month for his brain mets. We have not seen new tumor growth since starting the medication. Some of his side effects have been rash, which was controlled by an oral allergy med. and a cortizone cream, and sensitivity to the sun.
I am new to this forum but follow your posts, as we are close in age. I am sending positive thoughts and energy to you and your family.
Megan
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- March 17, 2012 at 11:57 pm
Kevin,
I would like to wish you the best of luck on Zelboraf. My husband has been taking this drug for just over a month for his brain mets. We have not seen new tumor growth since starting the medication. Some of his side effects have been rash, which was controlled by an oral allergy med. and a cortizone cream, and sensitivity to the sun.
I am new to this forum but follow your posts, as we are close in age. I am sending positive thoughts and energy to you and your family.
Megan
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- March 17, 2012 at 11:57 pm
Kevin,
I would like to wish you the best of luck on Zelboraf. My husband has been taking this drug for just over a month for his brain mets. We have not seen new tumor growth since starting the medication. Some of his side effects have been rash, which was controlled by an oral allergy med. and a cortizone cream, and sensitivity to the sun.
I am new to this forum but follow your posts, as we are close in age. I am sending positive thoughts and energy to you and your family.
Megan
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