› Forums › General Melanoma Community › Two more weeks off Zelboraf
- This topic has 21 replies, 4 voices, and was last updated 11 years, 7 months ago by
Tina D.
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- September 21, 2012 at 4:08 pm
I have been on Z since May, had a couple weeks off due to severe rash, restarted on 3 pills twice daily & had scans showing NED beginning of July. A couple weeks ago, I started getting increasingly ill and we assumed it was from the Z side effects. But I was running increased temp, chills, increased nausea/vomiting and just feeling BAD. Was taken off for a week to see if that would help and during that time had extreme epigastric pain,etc. Found a large gallstone completely blocking gallbladder.
I have been on Z since May, had a couple weeks off due to severe rash, restarted on 3 pills twice daily & had scans showing NED beginning of July. A couple weeks ago, I started getting increasingly ill and we assumed it was from the Z side effects. But I was running increased temp, chills, increased nausea/vomiting and just feeling BAD. Was taken off for a week to see if that would help and during that time had extreme epigastric pain,etc. Found a large gallstone completely blocking gallbladder. Had surgery 10 days ago to have it removed ( and they also found my intestines adhered to my liver from previous scar tissue). I was supposed to restart the Z a week post-op, but was still no where near recovered & restarting the side effects was rather intimidating! Yesterday my oncologist said to take 2 more weeks off. So…. I am really looking foward to having this time to get back on my feet. In fact, tonight we are going out to celebrate our 2nd eldest daughter's passing her LPN boards this past week! It is nice to be starting to feel a little better.
Anyone else had to take this long of a break from Zelboraf? how were the side effects when you restarted ?
Tina
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- September 21, 2012 at 5:21 pm
Hi Tina – I only took about a 7 day break from Z and started back up on the lower dose of 3 pills. My scans in July showed shrinkage but my scans in Sept showed growth. Like you I had been having the same issues/side effects for 2 weeks or so before my scans. But we're guessing those side effects were due to my intestine spot growing. Although honestly, since I've been off Z for a week almost all those side effects/symptoms are gone. So who really knows.
I am getting surgery Oct 4th to remove part of the small intestine. Will switch to Ipi. Good luck with restarting! Positive thoughts and prayers your way!
Erin
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- September 21, 2012 at 5:21 pm
Hi Tina – I only took about a 7 day break from Z and started back up on the lower dose of 3 pills. My scans in July showed shrinkage but my scans in Sept showed growth. Like you I had been having the same issues/side effects for 2 weeks or so before my scans. But we're guessing those side effects were due to my intestine spot growing. Although honestly, since I've been off Z for a week almost all those side effects/symptoms are gone. So who really knows.
I am getting surgery Oct 4th to remove part of the small intestine. Will switch to Ipi. Good luck with restarting! Positive thoughts and prayers your way!
Erin
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- September 23, 2012 at 6:43 pm
Erin,
Thank you… I am very much enjoying a little time feeling better, even though I am recovering from the gb surgery. We are planning a short weekend camping trip this coming weekend ( where we will celebrate our 4th child's 16th birthday!!), then I start back after that..
I read abt your upcoming surgery, and pray for a quick recovery for you, and all the best with the upcoming IPI treatment…
Tina
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- September 23, 2012 at 6:43 pm
Erin,
Thank you… I am very much enjoying a little time feeling better, even though I am recovering from the gb surgery. We are planning a short weekend camping trip this coming weekend ( where we will celebrate our 4th child's 16th birthday!!), then I start back after that..
I read abt your upcoming surgery, and pray for a quick recovery for you, and all the best with the upcoming IPI treatment…
Tina
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- September 23, 2012 at 6:43 pm
Erin,
Thank you… I am very much enjoying a little time feeling better, even though I am recovering from the gb surgery. We are planning a short weekend camping trip this coming weekend ( where we will celebrate our 4th child's 16th birthday!!), then I start back after that..
I read abt your upcoming surgery, and pray for a quick recovery for you, and all the best with the upcoming IPI treatment…
Tina
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- September 21, 2012 at 5:21 pm
Hi Tina – I only took about a 7 day break from Z and started back up on the lower dose of 3 pills. My scans in July showed shrinkage but my scans in Sept showed growth. Like you I had been having the same issues/side effects for 2 weeks or so before my scans. But we're guessing those side effects were due to my intestine spot growing. Although honestly, since I've been off Z for a week almost all those side effects/symptoms are gone. So who really knows.
I am getting surgery Oct 4th to remove part of the small intestine. Will switch to Ipi. Good luck with restarting! Positive thoughts and prayers your way!
Erin
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- September 21, 2012 at 6:54 pm
Tina – I was off 2 weeks in the beginning and did have some side effects return but not as badly. Mostly now after 5 mos things come and go, new little surprises still popping up, but mostly not crippling. This week – bleeding gums and little blisters on my lips.It’s unbelievable how many nasty ways this effects people that they just don’t understand. At least it is still working, I am going off next week ( I hope, waiting on insurance) and the next day start ipi, then go right back on Zel in 3 mos.
I am a little intimidated and would love to hear how it goes for you after 4 weeks off. Enjoy your break and hope you feel better soon!
Amy
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- September 23, 2012 at 6:53 pm
Amy,
I will post once I have restarted and see how I do on it. The side effects are so unusual, it seems with Z. I also had lost my taste to a degree, and many foods just didnt taste right to me..that has returned to normal during this down time, so I am hoping it will stay that way 🙂
We got to celebrate our 22 yr old daughter passing her LPN boards and this coming weekend one of our daughters turns 16 and we will be celebrating that while on a weekend camping trip 🙂 . I am enjoying feeling better, for sure! If I wasnt on lifting and activity restrictions for surgical recovery, I could knock some things out for sure that I need to do!!!
I am praying for you with your upcoming change of treatments & will be watching to see your updates. Did you get word from your insurance company?
Tina
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- September 30, 2012 at 7:15 pm
Congrats on being able to celebrate your daughter's success!
I have been having the worst time taking Z. When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop. Bloodshot eyes. I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point. Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues. I then progressed to 3 pills 2x a day and everything got worse. The one side affect in addition to those listed above was nausea. I take nausea pills and they don't work whatsoeve. I have no desire to eat and little taste of food. It's the weekend so I went ahead and dropped to 2 pills 2x a day. I have read that at that dose it doesn't even work! I have no idea. Side affects have started to lessen a little bit but not much. I am so discouraged right now.
Karin
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- September 30, 2012 at 7:15 pm
Congrats on being able to celebrate your daughter's success!
I have been having the worst time taking Z. When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop. Bloodshot eyes. I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point. Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues. I then progressed to 3 pills 2x a day and everything got worse. The one side affect in addition to those listed above was nausea. I take nausea pills and they don't work whatsoeve. I have no desire to eat and little taste of food. It's the weekend so I went ahead and dropped to 2 pills 2x a day. I have read that at that dose it doesn't even work! I have no idea. Side affects have started to lessen a little bit but not much. I am so discouraged right now.
Karin
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- September 30, 2012 at 7:15 pm
Congrats on being able to celebrate your daughter's success!
I have been having the worst time taking Z. When I first began, at day 6 I broke out in a chicken pox like rash starting at my head with progressio down my body. Also chills and very high fevers nonstop. Bloodshot eyes. I went off the drug for a few days and started back at 1 pill 2x a day for 3 days, then increased to 2 pills 2x a day and I did pretty well at that point. Mostly chills and fevers, painful nodules on my hands and feet, joint pain and some eye issues. I then progressed to 3 pills 2x a day and everything got worse. The one side affect in addition to those listed above was nausea. I take nausea pills and they don't work whatsoeve. I have no desire to eat and little taste of food. It's the weekend so I went ahead and dropped to 2 pills 2x a day. I have read that at that dose it doesn't even work! I have no idea. Side affects have started to lessen a little bit but not much. I am so discouraged right now.
Karin
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- October 2, 2012 at 3:38 pm
Karen,
It sure sounds like you are having a rough go of it. I will say that many people say the side effects lessen after being on it for abt 3-4 months. Also, Amy's Dr takes her of for a couple days or so when the side effects build to being intolerable. Her Dr also has someone on Z one week on/one week off and they say she is doing well with that regimen. What nausea pills have they given you? I take Phenergan when the nausea has been bad and it has worked great for me, except that it puts me to sleep. Also… some have been put on low dose prednisone to try to counterat the side effects and enable them to stay on as high a dose as possible. As for whether or not the 2 pills a day are effective, I am sure I have read of someone on this board who was on that dose and having benefit, but I cannot remember who it was.
I also found that ibuprofen helped some with the aches and pains, though for the most part, not to a great degree.
Keep in touch with your Dr so he/she knows how you are tolerating it, and sometimes the Zelboraf hotline can be helpful,so you can always put a call in there for advice.
I also did find that my taste sensation was not normal and foods just didnt taste right. And yes, I have lost most of my hair, though while on this extended break I have some tiny baby hairs growing in… not sure if it will start falling out again once I am back on for a bit.
I have recuperated from my gallbladdr surgery now and I restarted Z lastnight.So far I feel fine, but I do have only 2 doses down.
I am sorry this is such a discouraging time. Let me know what the Dr had to say and how you are doing.Hang in there! How long have you been on it, and when are your first scans?
Tina
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- October 2, 2012 at 3:38 pm
Karen,
It sure sounds like you are having a rough go of it. I will say that many people say the side effects lessen after being on it for abt 3-4 months. Also, Amy's Dr takes her of for a couple days or so when the side effects build to being intolerable. Her Dr also has someone on Z one week on/one week off and they say she is doing well with that regimen. What nausea pills have they given you? I take Phenergan when the nausea has been bad and it has worked great for me, except that it puts me to sleep. Also… some have been put on low dose prednisone to try to counterat the side effects and enable them to stay on as high a dose as possible. As for whether or not the 2 pills a day are effective, I am sure I have read of someone on this board who was on that dose and having benefit, but I cannot remember who it was.
I also found that ibuprofen helped some with the aches and pains, though for the most part, not to a great degree.
Keep in touch with your Dr so he/she knows how you are tolerating it, and sometimes the Zelboraf hotline can be helpful,so you can always put a call in there for advice.
I also did find that my taste sensation was not normal and foods just didnt taste right. And yes, I have lost most of my hair, though while on this extended break I have some tiny baby hairs growing in… not sure if it will start falling out again once I am back on for a bit.
I have recuperated from my gallbladdr surgery now and I restarted Z lastnight.So far I feel fine, but I do have only 2 doses down.
I am sorry this is such a discouraging time. Let me know what the Dr had to say and how you are doing.Hang in there! How long have you been on it, and when are your first scans?
Tina
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- October 2, 2012 at 3:38 pm
Karen,
It sure sounds like you are having a rough go of it. I will say that many people say the side effects lessen after being on it for abt 3-4 months. Also, Amy's Dr takes her of for a couple days or so when the side effects build to being intolerable. Her Dr also has someone on Z one week on/one week off and they say she is doing well with that regimen. What nausea pills have they given you? I take Phenergan when the nausea has been bad and it has worked great for me, except that it puts me to sleep. Also… some have been put on low dose prednisone to try to counterat the side effects and enable them to stay on as high a dose as possible. As for whether or not the 2 pills a day are effective, I am sure I have read of someone on this board who was on that dose and having benefit, but I cannot remember who it was.
I also found that ibuprofen helped some with the aches and pains, though for the most part, not to a great degree.
Keep in touch with your Dr so he/she knows how you are tolerating it, and sometimes the Zelboraf hotline can be helpful,so you can always put a call in there for advice.
I also did find that my taste sensation was not normal and foods just didnt taste right. And yes, I have lost most of my hair, though while on this extended break I have some tiny baby hairs growing in… not sure if it will start falling out again once I am back on for a bit.
I have recuperated from my gallbladdr surgery now and I restarted Z lastnight.So far I feel fine, but I do have only 2 doses down.
I am sorry this is such a discouraging time. Let me know what the Dr had to say and how you are doing.Hang in there! How long have you been on it, and when are your first scans?
Tina
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- September 23, 2012 at 6:53 pm
Amy,
I will post once I have restarted and see how I do on it. The side effects are so unusual, it seems with Z. I also had lost my taste to a degree, and many foods just didnt taste right to me..that has returned to normal during this down time, so I am hoping it will stay that way 🙂
We got to celebrate our 22 yr old daughter passing her LPN boards and this coming weekend one of our daughters turns 16 and we will be celebrating that while on a weekend camping trip 🙂 . I am enjoying feeling better, for sure! If I wasnt on lifting and activity restrictions for surgical recovery, I could knock some things out for sure that I need to do!!!
I am praying for you with your upcoming change of treatments & will be watching to see your updates. Did you get word from your insurance company?
Tina
-
- September 23, 2012 at 6:53 pm
Amy,
I will post once I have restarted and see how I do on it. The side effects are so unusual, it seems with Z. I also had lost my taste to a degree, and many foods just didnt taste right to me..that has returned to normal during this down time, so I am hoping it will stay that way 🙂
We got to celebrate our 22 yr old daughter passing her LPN boards and this coming weekend one of our daughters turns 16 and we will be celebrating that while on a weekend camping trip 🙂 . I am enjoying feeling better, for sure! If I wasnt on lifting and activity restrictions for surgical recovery, I could knock some things out for sure that I need to do!!!
I am praying for you with your upcoming change of treatments & will be watching to see your updates. Did you get word from your insurance company?
Tina
-
- September 21, 2012 at 6:54 pm
Tina – I was off 2 weeks in the beginning and did have some side effects return but not as badly. Mostly now after 5 mos things come and go, new little surprises still popping up, but mostly not crippling. This week – bleeding gums and little blisters on my lips.It’s unbelievable how many nasty ways this effects people that they just don’t understand. At least it is still working, I am going off next week ( I hope, waiting on insurance) and the next day start ipi, then go right back on Zel in 3 mos.
I am a little intimidated and would love to hear how it goes for you after 4 weeks off. Enjoy your break and hope you feel better soon!
Amy
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- September 21, 2012 at 6:54 pm
Tina – I was off 2 weeks in the beginning and did have some side effects return but not as badly. Mostly now after 5 mos things come and go, new little surprises still popping up, but mostly not crippling. This week – bleeding gums and little blisters on my lips.It’s unbelievable how many nasty ways this effects people that they just don’t understand. At least it is still working, I am going off next week ( I hope, waiting on insurance) and the next day start ipi, then go right back on Zel in 3 mos.
I am a little intimidated and would love to hear how it goes for you after 4 weeks off. Enjoy your break and hope you feel better soon!
Amy
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