› Forums › General Melanoma Community › Every other wk Zel – heard of this?
- This topic has 24 replies, 5 voices, and was last updated 13 years, 7 months ago by
Snickers60.
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- July 11, 2012 at 2:42 pm
So after being told the Zel is working and 2 mos on 3 pills twice a day I got hit WHAM a week ago with fever, chills, fatigue, hot flashes, sweating, loads of gas and horrid BMs, all over aches, sorta like the flu. Started in the evenings only then after a few days was all day. Dr couldnt find anything other than my liver levels going up but “not too bad” (his words) and took me off Zel for 3 days. Now going 1 wk on 2 pills twice a day then back up to 3, and we’ll see how it goes.So after being told the Zel is working and 2 mos on 3 pills twice a day I got hit WHAM a week ago with fever, chills, fatigue, hot flashes, sweating, loads of gas and horrid BMs, all over aches, sorta like the flu. Started in the evenings only then after a few days was all day. Dr couldnt find anything other than my liver levels going up but “not too bad” (his words) and took me off Zel for 3 days. Now going 1 wk on 2 pills twice a day then back up to 3, and we’ll see how it goes. He doesn’t believe in the half dose, but said he has a patient on a higher dose, 1 wk on, 1 wk off, and she is doing great. Anyone heard of this? I envy those of you who got around the side effects somehow!
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- July 11, 2012 at 5:35 pm
Sorry you a having such a hard time with"Z". Read your profile and see how bad the side effects are to you.Some like the bad taste and joint pain on me lasted about 6 months and then either subsided or lessened measureably.Still waiting for hair to grow back.Do not think it will.The diarrhea which was bad at least 2 to 3 days at a time at first si much less frequent and only a minor annoyance.Never realy had fatigue.Hope yours react the same way over time.Will be in my prayers as usual toward the long time goal of NED.All the best in this fight. Al
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- July 11, 2012 at 5:35 pm
Sorry you a having such a hard time with"Z". Read your profile and see how bad the side effects are to you.Some like the bad taste and joint pain on me lasted about 6 months and then either subsided or lessened measureably.Still waiting for hair to grow back.Do not think it will.The diarrhea which was bad at least 2 to 3 days at a time at first si much less frequent and only a minor annoyance.Never realy had fatigue.Hope yours react the same way over time.Will be in my prayers as usual toward the long time goal of NED.All the best in this fight. Al
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- July 11, 2012 at 5:35 pm
Sorry you a having such a hard time with"Z". Read your profile and see how bad the side effects are to you.Some like the bad taste and joint pain on me lasted about 6 months and then either subsided or lessened measureably.Still waiting for hair to grow back.Do not think it will.The diarrhea which was bad at least 2 to 3 days at a time at first si much less frequent and only a minor annoyance.Never realy had fatigue.Hope yours react the same way over time.Will be in my prayers as usual toward the long time goal of NED.All the best in this fight. Al
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- July 11, 2012 at 6:09 pm
Sorry you have been dealing with side effects. I started Z May 30th. It took about 7 or 8 days before I ended up with a HORRIBLE rash from chin to toes. I was taken off for a week and then started back up June 15th at a reduced dose. I take 3 pills 2x's per day. This seems to be much more tolerable for me. I do still get some joint pain, minor hair loss (good thing I have a LOT on my head! lol). I think my hair and skin feels awful. I did have my first experience with too much sun. I missed a small spot on my hand and above my elbows on Saturday. It was over 100 here and I should have been a hermit and stayed inside…
But back to your question – I was wondering if in part of the trials if they tested taking folks on and off of Zelboraf. Or every other day? I know typically part of trials is to figure out how much folks can handle – but do you test how little? I have my first set of scans coming up on Friday since going on Z. I had a spot on my small intestine and a few swollen lymph nodes. We'll see how things look!
Best of luck. Thoughts and prayers your way!
Erin
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- July 11, 2012 at 11:23 pm
I appreciate your feedback. My doc runs a lot of trials, which I tried to get in, but with a cardiac met, i am completely ineligible. I think they are still learning alot about Zel but he says I have to be able to take 3 pills twice a day. Side effects do keep changing, and after 2 mos I thought I was cruising, which is why it’s so frustrating. It felt like i was overdosing on it. I’m grateful though for each day and for my doc who is very knowledgeable and also willing to think a little outside the box. -
- July 11, 2012 at 11:23 pm
I appreciate your feedback. My doc runs a lot of trials, which I tried to get in, but with a cardiac met, i am completely ineligible. I think they are still learning alot about Zel but he says I have to be able to take 3 pills twice a day. Side effects do keep changing, and after 2 mos I thought I was cruising, which is why it’s so frustrating. It felt like i was overdosing on it. I’m grateful though for each day and for my doc who is very knowledgeable and also willing to think a little outside the box. -
- July 11, 2012 at 11:23 pm
I appreciate your feedback. My doc runs a lot of trials, which I tried to get in, but with a cardiac met, i am completely ineligible. I think they are still learning alot about Zel but he says I have to be able to take 3 pills twice a day. Side effects do keep changing, and after 2 mos I thought I was cruising, which is why it’s so frustrating. It felt like i was overdosing on it. I’m grateful though for each day and for my doc who is very knowledgeable and also willing to think a little outside the box. -
- July 12, 2012 at 2:25 pm
Thanks Dick. Yes I've seen your story and that's great that you've been on Z so long with great results! Hope that works for me also. Although compared to some folks that have started on Zelboraf my tumor burden wasn't much. Just a small spot in my small intestine and some swollen lymph nodes around it. Such a strange disease….
Thoughts and prayers for your all!
Erin
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- July 12, 2012 at 2:25 pm
Thanks Dick. Yes I've seen your story and that's great that you've been on Z so long with great results! Hope that works for me also. Although compared to some folks that have started on Zelboraf my tumor burden wasn't much. Just a small spot in my small intestine and some swollen lymph nodes around it. Such a strange disease….
Thoughts and prayers for your all!
Erin
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- July 12, 2012 at 7:44 pm
I've never heard of that, but we are hoping and praying that soon they will cut Wayne's dose back since he was NED only 7 weeks after starting it. He has been on full meal deal since the get go. 4 tabs twice a day.
His fever and many of the other symptoms have all but subsided = joint pain, fever, rash is still there, but barely visible, all over aches and flu like is pretty much gone….energy is bak and he's walking the treadmill again. Spirits are much better and he seems like the OLD WAYNE again for the most part.
We leave for MDA on Monday for the short visit and then in Aug. they will do PET etc. all over again to see if he is still NED ! Zelboraf has been pretty much a MIRACLE DRUG for him. We are grateful to the moon and back to the Lord who has helped him and me through this SHOCKING nightmare that began again in March, 2012.
His hair is VERY thin and he hates that, but unless he bends over, it only looks like it's thinning. I keep telling him he's 6' 4 " – so not many people see the top of his head. OL
I wish you the best ! I've seen docs use Zel very sparingly in so many cases, but with Wayne, Dr. B has been all the way from the get go.
Keep us updated !
Nancy (devoted wife of 3 x Warrior Wayne)
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- July 12, 2012 at 7:44 pm
I've never heard of that, but we are hoping and praying that soon they will cut Wayne's dose back since he was NED only 7 weeks after starting it. He has been on full meal deal since the get go. 4 tabs twice a day.
His fever and many of the other symptoms have all but subsided = joint pain, fever, rash is still there, but barely visible, all over aches and flu like is pretty much gone….energy is bak and he's walking the treadmill again. Spirits are much better and he seems like the OLD WAYNE again for the most part.
We leave for MDA on Monday for the short visit and then in Aug. they will do PET etc. all over again to see if he is still NED ! Zelboraf has been pretty much a MIRACLE DRUG for him. We are grateful to the moon and back to the Lord who has helped him and me through this SHOCKING nightmare that began again in March, 2012.
His hair is VERY thin and he hates that, but unless he bends over, it only looks like it's thinning. I keep telling him he's 6' 4 " – so not many people see the top of his head. OL
I wish you the best ! I've seen docs use Zel very sparingly in so many cases, but with Wayne, Dr. B has been all the way from the get go.
Keep us updated !
Nancy (devoted wife of 3 x Warrior Wayne)
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- July 12, 2012 at 7:46 pm
Wanted to add that Wayne started feeling a LOT better when I got him on a B-50 (all the b's) and he's also taking fish oil, turmeric, and Vit. D again. They have all helped in some way.
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- July 12, 2012 at 7:46 pm
Wanted to add that Wayne started feeling a LOT better when I got him on a B-50 (all the b's) and he's also taking fish oil, turmeric, and Vit. D again. They have all helped in some way.
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- July 12, 2012 at 7:46 pm
Wanted to add that Wayne started feeling a LOT better when I got him on a B-50 (all the b's) and he's also taking fish oil, turmeric, and Vit. D again. They have all helped in some way.
-
- July 12, 2012 at 7:44 pm
I've never heard of that, but we are hoping and praying that soon they will cut Wayne's dose back since he was NED only 7 weeks after starting it. He has been on full meal deal since the get go. 4 tabs twice a day.
His fever and many of the other symptoms have all but subsided = joint pain, fever, rash is still there, but barely visible, all over aches and flu like is pretty much gone….energy is bak and he's walking the treadmill again. Spirits are much better and he seems like the OLD WAYNE again for the most part.
We leave for MDA on Monday for the short visit and then in Aug. they will do PET etc. all over again to see if he is still NED ! Zelboraf has been pretty much a MIRACLE DRUG for him. We are grateful to the moon and back to the Lord who has helped him and me through this SHOCKING nightmare that began again in March, 2012.
His hair is VERY thin and he hates that, but unless he bends over, it only looks like it's thinning. I keep telling him he's 6' 4 " – so not many people see the top of his head. OL
I wish you the best ! I've seen docs use Zel very sparingly in so many cases, but with Wayne, Dr. B has been all the way from the get go.
Keep us updated !
Nancy (devoted wife of 3 x Warrior Wayne)
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- July 12, 2012 at 2:25 pm
Thanks Dick. Yes I've seen your story and that's great that you've been on Z so long with great results! Hope that works for me also. Although compared to some folks that have started on Zelboraf my tumor burden wasn't much. Just a small spot in my small intestine and some swollen lymph nodes around it. Such a strange disease….
Thoughts and prayers for your all!
Erin
-
- July 11, 2012 at 6:09 pm
Sorry you have been dealing with side effects. I started Z May 30th. It took about 7 or 8 days before I ended up with a HORRIBLE rash from chin to toes. I was taken off for a week and then started back up June 15th at a reduced dose. I take 3 pills 2x's per day. This seems to be much more tolerable for me. I do still get some joint pain, minor hair loss (good thing I have a LOT on my head! lol). I think my hair and skin feels awful. I did have my first experience with too much sun. I missed a small spot on my hand and above my elbows on Saturday. It was over 100 here and I should have been a hermit and stayed inside…
But back to your question – I was wondering if in part of the trials if they tested taking folks on and off of Zelboraf. Or every other day? I know typically part of trials is to figure out how much folks can handle – but do you test how little? I have my first set of scans coming up on Friday since going on Z. I had a spot on my small intestine and a few swollen lymph nodes. We'll see how things look!
Best of luck. Thoughts and prayers your way!
Erin
-
- July 11, 2012 at 6:09 pm
Sorry you have been dealing with side effects. I started Z May 30th. It took about 7 or 8 days before I ended up with a HORRIBLE rash from chin to toes. I was taken off for a week and then started back up June 15th at a reduced dose. I take 3 pills 2x's per day. This seems to be much more tolerable for me. I do still get some joint pain, minor hair loss (good thing I have a LOT on my head! lol). I think my hair and skin feels awful. I did have my first experience with too much sun. I missed a small spot on my hand and above my elbows on Saturday. It was over 100 here and I should have been a hermit and stayed inside…
But back to your question – I was wondering if in part of the trials if they tested taking folks on and off of Zelboraf. Or every other day? I know typically part of trials is to figure out how much folks can handle – but do you test how little? I have my first set of scans coming up on Friday since going on Z. I had a spot on my small intestine and a few swollen lymph nodes. We'll see how things look!
Best of luck. Thoughts and prayers your way!
Erin
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