› Forums › General Melanoma Community › 6th week on Zelboraf, good news.
- This topic has 60 replies, 17 voices, and was last updated 13 years, 4 months ago by
misumali.
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- April 18, 2012 at 7:43 pm
Hi everyone, I've been meaning and wanting to update, just haven't had anything to update on. But as of today, I've been on Zelboraf for six weeks, no noticeable side effects yet, not sure if that's a good or bad thing. One day I could feel the sun effecting/warming my skin a little quicker than normal. So I headed inside and have been really smart about my exposure since then. UPF clothing, umbrellas and such, and keeping a good eye out for any changes in my skin.
Hi everyone, I've been meaning and wanting to update, just haven't had anything to update on. But as of today, I've been on Zelboraf for six weeks, no noticeable side effects yet, not sure if that's a good or bad thing. One day I could feel the sun effecting/warming my skin a little quicker than normal. So I headed inside and have been really smart about my exposure since then. UPF clothing, umbrellas and such, and keeping a good eye out for any changes in my skin.
As for the good news, I had a PET/CT on Monday, my first one since starting Zelboraf. The report states that the things in my lungs are getting smaller. Finally. 🙂 Of all the tumors/nodules in there, the largest, which was 4 – 4.5 cm in diameter a couple months ago is now reported at 2.5 -3.5 cm I think. And everything else inside me appears to be clear and normal. I know with Zelboraf, it’s most likely just a temporary fix, but maybe not, I've heard of a few people going on a year or two on the drug, and that gives me hope. Either way, it's a start, and will hopefully buy some time, maybe open up some other options. As for that steroid I'm on, I’ve tapered down from 4mg/morn and 4mg/night to just 1mg in the morning with just under a week to go until I'm completely off it. That'll be great, for it's had me feeling pretty crummy from time to time the last two months. I’ve got a follow up brain MRI on May 1st, and a couple appointments the following week, to talk and schedule another body scan. And that's it for now. Hopefully I'll be back to read and write more good news. Until then, always hoping for the best, for all of us.
-Kevin
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- April 18, 2012 at 7:52 pm
Kevin,
I'm glad you've given us an update. Great news that the lung tumors have shown shrinkage. Please let us know how the brain mri goes. My Dr is talking about putting me on a trial with the Zelboraf for brain mets (my latest mri is questionable) and wondering how others are doing on that drug with brain mets.
I hope when you get off of the steroids you will feel better.
Hoping for the best,
Linda
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- April 18, 2012 at 7:52 pm
Kevin,
I'm glad you've given us an update. Great news that the lung tumors have shown shrinkage. Please let us know how the brain mri goes. My Dr is talking about putting me on a trial with the Zelboraf for brain mets (my latest mri is questionable) and wondering how others are doing on that drug with brain mets.
I hope when you get off of the steroids you will feel better.
Hoping for the best,
Linda
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- April 19, 2012 at 5:02 am
I had/have a few untreated brain mets when I started zelboraf, too small to treat with SRS (1 to 3 mm I think). My last MRI from a few weeks ago, after a couple weeks on Zelboraf, showed these drastically smaller and some undetectable. So yes, apparently Zelboraf does work on brain mets. 🙂 If I find out on May 1st that they are even smaller or completely gone, I'll let you know. Hope!
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- April 19, 2012 at 5:02 am
I had/have a few untreated brain mets when I started zelboraf, too small to treat with SRS (1 to 3 mm I think). My last MRI from a few weeks ago, after a couple weeks on Zelboraf, showed these drastically smaller and some undetectable. So yes, apparently Zelboraf does work on brain mets. 🙂 If I find out on May 1st that they are even smaller or completely gone, I'll let you know. Hope!
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- April 19, 2012 at 5:02 am
I had/have a few untreated brain mets when I started zelboraf, too small to treat with SRS (1 to 3 mm I think). My last MRI from a few weeks ago, after a couple weeks on Zelboraf, showed these drastically smaller and some undetectable. So yes, apparently Zelboraf does work on brain mets. 🙂 If I find out on May 1st that they are even smaller or completely gone, I'll let you know. Hope!
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- April 18, 2012 at 7:52 pm
Kevin,
I'm glad you've given us an update. Great news that the lung tumors have shown shrinkage. Please let us know how the brain mri goes. My Dr is talking about putting me on a trial with the Zelboraf for brain mets (my latest mri is questionable) and wondering how others are doing on that drug with brain mets.
I hope when you get off of the steroids you will feel better.
Hoping for the best,
Linda
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- April 18, 2012 at 8:43 pm
Good to see you post Kevin – I'm glad there is noticeable shrinkage of the lung mets – keep the momentum going! It's also great to hear you are able to taper off the steroid and I'm sure that will help you feel a lot better.
Will send good thoughts and prayer that this positive trend continues and hope you can have a nice break!
Best regards,
Mary
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- April 18, 2012 at 8:43 pm
Good to see you post Kevin – I'm glad there is noticeable shrinkage of the lung mets – keep the momentum going! It's also great to hear you are able to taper off the steroid and I'm sure that will help you feel a lot better.
Will send good thoughts and prayer that this positive trend continues and hope you can have a nice break!
Best regards,
Mary
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- April 18, 2012 at 8:43 pm
Good to see you post Kevin – I'm glad there is noticeable shrinkage of the lung mets – keep the momentum going! It's also great to hear you are able to taper off the steroid and I'm sure that will help you feel a lot better.
Will send good thoughts and prayer that this positive trend continues and hope you can have a nice break!
Best regards,
Mary
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- April 18, 2012 at 9:05 pm
Great update Kevin.I am into my 8th month on Zelboraf and got my first scans on Monday, since i started taking the drug on 9/12/11.The results were just about as good as it gets.The tumors in the neck all shrunk 50-75%.No disease any where else.Be happy you have no side effectsThat in no way indicates the effectiveness of the drug.Medical research is getting close to treat melanoma as a chronic condition.We all want you around for that day.My prayers go out for all of us fighting this disease. Al
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- April 18, 2012 at 9:05 pm
Great update Kevin.I am into my 8th month on Zelboraf and got my first scans on Monday, since i started taking the drug on 9/12/11.The results were just about as good as it gets.The tumors in the neck all shrunk 50-75%.No disease any where else.Be happy you have no side effectsThat in no way indicates the effectiveness of the drug.Medical research is getting close to treat melanoma as a chronic condition.We all want you around for that day.My prayers go out for all of us fighting this disease. Al
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- April 18, 2012 at 9:05 pm
Great update Kevin.I am into my 8th month on Zelboraf and got my first scans on Monday, since i started taking the drug on 9/12/11.The results were just about as good as it gets.The tumors in the neck all shrunk 50-75%.No disease any where else.Be happy you have no side effectsThat in no way indicates the effectiveness of the drug.Medical research is getting close to treat melanoma as a chronic condition.We all want you around for that day.My prayers go out for all of us fighting this disease. Al
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- April 18, 2012 at 10:17 pm
Hi Kevin, that is wonderful news! My husband started on Zelboraf March 29th. He has had a lot of side effects such as nausea, photosensitivity and fatigue. He has brain mets so still waiting on next scan to see the results. Praying for everyone!
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- April 18, 2012 at 10:17 pm
Hi Kevin, that is wonderful news! My husband started on Zelboraf March 29th. He has had a lot of side effects such as nausea, photosensitivity and fatigue. He has brain mets so still waiting on next scan to see the results. Praying for everyone!
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- April 18, 2012 at 10:17 pm
Hi Kevin, that is wonderful news! My husband started on Zelboraf March 29th. He has had a lot of side effects such as nausea, photosensitivity and fatigue. He has brain mets so still waiting on next scan to see the results. Praying for everyone!
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- April 18, 2012 at 11:09 pm
Kevin thats great news i know 1 person here on BRAF and 1 on combo MEK/ Braf , one is 18 months plus and one over 2 years NED, why not you!
best wishes
James
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- April 18, 2012 at 11:09 pm
Kevin thats great news i know 1 person here on BRAF and 1 on combo MEK/ Braf , one is 18 months plus and one over 2 years NED, why not you!
best wishes
James
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- April 18, 2012 at 11:09 pm
Kevin thats great news i know 1 person here on BRAF and 1 on combo MEK/ Braf , one is 18 months plus and one over 2 years NED, why not you!
best wishes
James
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- April 18, 2012 at 11:29 pm
Hi Kevin,
Glad to hear that Zelboraf is doing its thing. I've got my 10 month scans tomorrow on the GSK variant, and it seems to be keeping everything steady, including my brain mets. I figure it is (probably) a temporary solution, though the longer you're stable on it, the greater the chances of something else down the track when resistence eventually does occur.
God luck!
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- April 18, 2012 at 11:29 pm
Hi Kevin,
Glad to hear that Zelboraf is doing its thing. I've got my 10 month scans tomorrow on the GSK variant, and it seems to be keeping everything steady, including my brain mets. I figure it is (probably) a temporary solution, though the longer you're stable on it, the greater the chances of something else down the track when resistence eventually does occur.
God luck!
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- April 18, 2012 at 11:29 pm
Hi Kevin,
Glad to hear that Zelboraf is doing its thing. I've got my 10 month scans tomorrow on the GSK variant, and it seems to be keeping everything steady, including my brain mets. I figure it is (probably) a temporary solution, though the longer you're stable on it, the greater the chances of something else down the track when resistence eventually does occur.
God luck!
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- April 18, 2012 at 11:57 pm
Kevin,
Thanks so much for the update. I have been wondering about how you are doing. I'm happy to hear "Z" is working for you and I look forward to hearing great news about your MRI. Please know that you have been and will continue to be in my prayers. God speed!
Tricia
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- April 18, 2012 at 11:57 pm
Kevin,
Thanks so much for the update. I have been wondering about how you are doing. I'm happy to hear "Z" is working for you and I look forward to hearing great news about your MRI. Please know that you have been and will continue to be in my prayers. God speed!
Tricia
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- April 18, 2012 at 11:57 pm
Kevin,
Thanks so much for the update. I have been wondering about how you are doing. I'm happy to hear "Z" is working for you and I look forward to hearing great news about your MRI. Please know that you have been and will continue to be in my prayers. God speed!
Tricia
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- April 19, 2012 at 1:58 am
Hi Kevin,
Glad to hear the good news about your response to Zelboraf. My son is on it and it's working for him, too. I sure wish it would work forever. I am hoping for the best, for all the strong, brave and heroic people fighting this disease.
God Bless,
Bridgette (Jeff's Mom)
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- April 19, 2012 at 1:58 am
Hi Kevin,
Glad to hear the good news about your response to Zelboraf. My son is on it and it's working for him, too. I sure wish it would work forever. I am hoping for the best, for all the strong, brave and heroic people fighting this disease.
God Bless,
Bridgette (Jeff's Mom)
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- April 19, 2012 at 1:58 am
Hi Kevin,
Glad to hear the good news about your response to Zelboraf. My son is on it and it's working for him, too. I sure wish it would work forever. I am hoping for the best, for all the strong, brave and heroic people fighting this disease.
God Bless,
Bridgette (Jeff's Mom)
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- April 19, 2012 at 2:53 am
Hope your good news follows thru to your brain MRI! My husband has been on Zelboraf since 3-1-12 he has scans next week. Spine, brain and CT of abdomen. He was having some pain on left side the pain is gone and hopefully the tumor that is on his rib and all the others as well. Praying for all
Samantha -
- April 19, 2012 at 2:53 am
Hope your good news follows thru to your brain MRI! My husband has been on Zelboraf since 3-1-12 he has scans next week. Spine, brain and CT of abdomen. He was having some pain on left side the pain is gone and hopefully the tumor that is on his rib and all the others as well. Praying for all
Samantha -
- April 19, 2012 at 2:53 am
Hope your good news follows thru to your brain MRI! My husband has been on Zelboraf since 3-1-12 he has scans next week. Spine, brain and CT of abdomen. He was having some pain on left side the pain is gone and hopefully the tumor that is on his rib and all the others as well. Praying for all
Samantha -
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- April 19, 2012 at 6:57 pm
Kevin, (my son's name is Kevin) I am sooooo happy to hear your repor t !!! You may have just saved a life – mine ! 🙂 I, Nancy, caregiver to MELLY PATIENT WAYNE, have been too upset to live lately learning about all the spots on Wayne's Pet.
He does not have any brain mets (yipee), but does have several in lungs, liver, spine, leg. 6 I think ! He starts ZEL next week as we go back to MDAnderson.
I hope it works as well for him !!!!
PLEASE, PLEASE KEEP US UPDATED…….it's people like you that are ahead of us that help us make it through with
hope for the next day ! WAY TO GO – MAY YOU BE HEALED COMPLETELY ! You sound like a TROOPER !
PRAYERS and BLESSINGS OF HEALTH to each person and their loved one's fighting this BEAST !
Nancy (devoted wife to Melly patient Wayne)
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- April 20, 2012 at 2:22 am
I'm glad to spread hope and inspire, as many on here have done for me. I know exactly what you mean as hearing other peoples stories help us through ours. When I first found out about my situation, my scan showed a met in my brain, my liver, chest, over a dozen in my lungs, and a cluster of multiple growths on my back. Was so scary hearing so many places, probably similar feelings you're having about your husbands. I've been through multiple treatments/therapies and I think you'll be happy to hear of all of them, Zelboraf has been the easiest, least toxic, most effective, and fastest responding yet. I had a nodule right under my skin on my waist that I noticed shrinking within a week or two after starting and it disappeared completely soon after. I hope the others will eventually do the same. And hope the same for your husband. I'm glad to hear he's starting next week. I'll be thinking of you both.
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- April 20, 2012 at 2:22 am
I'm glad to spread hope and inspire, as many on here have done for me. I know exactly what you mean as hearing other peoples stories help us through ours. When I first found out about my situation, my scan showed a met in my brain, my liver, chest, over a dozen in my lungs, and a cluster of multiple growths on my back. Was so scary hearing so many places, probably similar feelings you're having about your husbands. I've been through multiple treatments/therapies and I think you'll be happy to hear of all of them, Zelboraf has been the easiest, least toxic, most effective, and fastest responding yet. I had a nodule right under my skin on my waist that I noticed shrinking within a week or two after starting and it disappeared completely soon after. I hope the others will eventually do the same. And hope the same for your husband. I'm glad to hear he's starting next week. I'll be thinking of you both.
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- April 20, 2012 at 2:22 am
I'm glad to spread hope and inspire, as many on here have done for me. I know exactly what you mean as hearing other peoples stories help us through ours. When I first found out about my situation, my scan showed a met in my brain, my liver, chest, over a dozen in my lungs, and a cluster of multiple growths on my back. Was so scary hearing so many places, probably similar feelings you're having about your husbands. I've been through multiple treatments/therapies and I think you'll be happy to hear of all of them, Zelboraf has been the easiest, least toxic, most effective, and fastest responding yet. I had a nodule right under my skin on my waist that I noticed shrinking within a week or two after starting and it disappeared completely soon after. I hope the others will eventually do the same. And hope the same for your husband. I'm glad to hear he's starting next week. I'll be thinking of you both.
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- April 19, 2012 at 6:57 pm
Kevin, (my son's name is Kevin) I am sooooo happy to hear your repor t !!! You may have just saved a life – mine ! 🙂 I, Nancy, caregiver to MELLY PATIENT WAYNE, have been too upset to live lately learning about all the spots on Wayne's Pet.
He does not have any brain mets (yipee), but does have several in lungs, liver, spine, leg. 6 I think ! He starts ZEL next week as we go back to MDAnderson.
I hope it works as well for him !!!!
PLEASE, PLEASE KEEP US UPDATED…….it's people like you that are ahead of us that help us make it through with
hope for the next day ! WAY TO GO – MAY YOU BE HEALED COMPLETELY ! You sound like a TROOPER !
PRAYERS and BLESSINGS OF HEALTH to each person and their loved one's fighting this BEAST !
Nancy (devoted wife to Melly patient Wayne)
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- April 19, 2012 at 6:57 pm
Kevin, (my son's name is Kevin) I am sooooo happy to hear your repor t !!! You may have just saved a life – mine ! 🙂 I, Nancy, caregiver to MELLY PATIENT WAYNE, have been too upset to live lately learning about all the spots on Wayne's Pet.
He does not have any brain mets (yipee), but does have several in lungs, liver, spine, leg. 6 I think ! He starts ZEL next week as we go back to MDAnderson.
I hope it works as well for him !!!!
PLEASE, PLEASE KEEP US UPDATED…….it's people like you that are ahead of us that help us make it through with
hope for the next day ! WAY TO GO – MAY YOU BE HEALED COMPLETELY ! You sound like a TROOPER !
PRAYERS and BLESSINGS OF HEALTH to each person and their loved one's fighting this BEAST !
Nancy (devoted wife to Melly patient Wayne)
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- April 19, 2012 at 7:14 pm
Kevin
Great news, very happy for you. Keep it up, I hope you too will be a long term responder.
Dick-
- April 20, 2012 at 2:28 am
Hi Dick, I've been meaning to write you with an update and a thank you for constant inspiration. I think about you often. And bring you up enough in coversation, you're known to much of my family, friends and coworkers as "two-year guy". I hope to one day join your ranks. 🙂
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- April 20, 2012 at 2:28 am
Hi Dick, I've been meaning to write you with an update and a thank you for constant inspiration. I think about you often. And bring you up enough in coversation, you're known to much of my family, friends and coworkers as "two-year guy". I hope to one day join your ranks. 🙂
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- April 20, 2012 at 2:28 am
Hi Dick, I've been meaning to write you with an update and a thank you for constant inspiration. I think about you often. And bring you up enough in coversation, you're known to much of my family, friends and coworkers as "two-year guy". I hope to one day join your ranks. 🙂
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- April 20, 2012 at 3:30 am
Well Kevin, I think my last post to you said "yippee, Keep rolliing on." Looks like your are doing that. Great!
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- April 20, 2012 at 3:30 am
Well Kevin, I think my last post to you said "yippee, Keep rolliing on." Looks like your are doing that. Great!
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- April 20, 2012 at 3:30 am
Well Kevin, I think my last post to you said "yippee, Keep rolliing on." Looks like your are doing that. Great!
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