› Forums › General Melanoma Community › 4 months and 13 days on zelboraf.
- This topic has 45 replies, 12 voices, and was last updated 13 years, 4 months ago by
Laurie from maine.
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- July 20, 2012 at 4:57 pm
Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation, and definitely have a bit of skin irritation – a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days.
Hi everyone. I'm just checking in with a quick update. As the subject of this post says, I've been on Zelboraf for 4 months and 13 days now. And I think I'm feeling alright. Besides the extreme photosensitivity, I seldom have joint and muscle pain/weakness anymore. Theres been some gastrointestinal irritation, and definitely have a bit of skin irritation – a few spots of irritation, like roughness or a goose bump type feeling. Nothing major though. I've had a slight headache (random pains that come and go quickly) and a little sinus congestion for the past two days. But I did take a short trip to my hometown, Tucson, which was 100degrees one day and thunderstorms and hail the next, and a a hotel with A/C, back to San Diego on warm day with no A/C here. I'm hoping this headache was just because of all the changes in climate.
I'd be lying if I said I wasn't scared though.
My last PET/CT was late April and my last Brain MRI was May 1st. Both of which looked good and showed that Zelboraf was working. For the most part everything feels ok, physically and neurologically, as far as I can tell. I've been off the steroid for three months now and just need my head to be clear or on the mend to maybe qualify for any trials, if there's any more out there I'd be fit for. I have PET/CT in the coming weeks and a brain MRI on Monday, coincidentally, exactly 2 years from the day my dermatologist had to break the news to me and this new life started. I'm hoping to update you all with a good report. We'll see how it goes. Thanks for hearing me out. I'll talk to you soon.
Warmly, -Kevin
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- July 20, 2012 at 5:32 pm
Hi Kevin – I just posted I think last week, wondering how you were doing and was thinking about you. Things are sounding good for you and I am so pleased. Wishing you well and thinking about you. i am still going through my grief journey…and it seems it takes a very long time. It will be 20 months on the 30th of this month. Jim's story is under my name on the profile screen.
Take Care,
Sherron, wife to Jim FOREVER
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- July 20, 2012 at 5:32 pm
Hi Kevin – I just posted I think last week, wondering how you were doing and was thinking about you. Things are sounding good for you and I am so pleased. Wishing you well and thinking about you. i am still going through my grief journey…and it seems it takes a very long time. It will be 20 months on the 30th of this month. Jim's story is under my name on the profile screen.
Take Care,
Sherron, wife to Jim FOREVER
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- July 20, 2012 at 5:32 pm
Hi Kevin – I just posted I think last week, wondering how you were doing and was thinking about you. Things are sounding good for you and I am so pleased. Wishing you well and thinking about you. i am still going through my grief journey…and it seems it takes a very long time. It will be 20 months on the 30th of this month. Jim's story is under my name on the profile screen.
Take Care,
Sherron, wife to Jim FOREVER
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- July 20, 2012 at 6:13 pm
Hi, were you told your stage I was "low risk" and "not to worry?" Seems like this is a recurring theme, I wish Stage I's were taken more seriously and given the attention deserved.
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- July 20, 2012 at 8:04 pm
In reality, there is no such "recurring theme" on this bulletin board concerning Stage I. It is low risk, and will stay that way no matter how many profiles to the contrary you read here.. As recent posts have stated, one can't get a good idea of how low risk Stage I really is by inference from the posters here. This bulletin board is extremely tilted toward those who have recurred, not the general population of those diagnosed with Stage I. The vast majority (something like 97% or better) will go on with their lives with no further complications from melanoma. Ever.
Yes, melanoma should be taken more seriously by the general population, by paying attention to changing moles, and of course limiting sun damage. But there currently are no efficacious tests to detect disease progression in Stage I patients. Scans such as PET and CT are dangerous because of radiation that can cause cancers. There is no dependable blood test that can give a timely diagnosis (perhaps one day there will be). Just what extra attention do you suggest?
Best wishes,
Harry
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- July 20, 2012 at 8:04 pm
In reality, there is no such "recurring theme" on this bulletin board concerning Stage I. It is low risk, and will stay that way no matter how many profiles to the contrary you read here.. As recent posts have stated, one can't get a good idea of how low risk Stage I really is by inference from the posters here. This bulletin board is extremely tilted toward those who have recurred, not the general population of those diagnosed with Stage I. The vast majority (something like 97% or better) will go on with their lives with no further complications from melanoma. Ever.
Yes, melanoma should be taken more seriously by the general population, by paying attention to changing moles, and of course limiting sun damage. But there currently are no efficacious tests to detect disease progression in Stage I patients. Scans such as PET and CT are dangerous because of radiation that can cause cancers. There is no dependable blood test that can give a timely diagnosis (perhaps one day there will be). Just what extra attention do you suggest?
Best wishes,
Harry
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- July 20, 2012 at 8:37 pm
Of course – if, through clinical trials, a therapy is shown to be effective and safe. I think that for Stage I patients the safety part is paramount. It would make no sense, for example to give something like Yervoy to a Stage I patient even if it can be shown to margianally lower the chance of recurrance. Risks and benefits must always be taken into account.
In reality, research for the forseeable future will focus on late stage patients. But who knows – perhaps one day there will be a pill that will nip melanoma in the bud. Let us hope.
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- July 20, 2012 at 8:37 pm
Of course – if, through clinical trials, a therapy is shown to be effective and safe. I think that for Stage I patients the safety part is paramount. It would make no sense, for example to give something like Yervoy to a Stage I patient even if it can be shown to margianally lower the chance of recurrance. Risks and benefits must always be taken into account.
In reality, research for the forseeable future will focus on late stage patients. But who knows – perhaps one day there will be a pill that will nip melanoma in the bud. Let us hope.
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- July 20, 2012 at 8:37 pm
Of course – if, through clinical trials, a therapy is shown to be effective and safe. I think that for Stage I patients the safety part is paramount. It would make no sense, for example to give something like Yervoy to a Stage I patient even if it can be shown to margianally lower the chance of recurrance. Risks and benefits must always be taken into account.
In reality, research for the forseeable future will focus on late stage patients. But who knows – perhaps one day there will be a pill that will nip melanoma in the bud. Let us hope.
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- July 20, 2012 at 8:04 pm
In reality, there is no such "recurring theme" on this bulletin board concerning Stage I. It is low risk, and will stay that way no matter how many profiles to the contrary you read here.. As recent posts have stated, one can't get a good idea of how low risk Stage I really is by inference from the posters here. This bulletin board is extremely tilted toward those who have recurred, not the general population of those diagnosed with Stage I. The vast majority (something like 97% or better) will go on with their lives with no further complications from melanoma. Ever.
Yes, melanoma should be taken more seriously by the general population, by paying attention to changing moles, and of course limiting sun damage. But there currently are no efficacious tests to detect disease progression in Stage I patients. Scans such as PET and CT are dangerous because of radiation that can cause cancers. There is no dependable blood test that can give a timely diagnosis (perhaps one day there will be). Just what extra attention do you suggest?
Best wishes,
Harry
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- July 20, 2012 at 6:14 pm
Great news that the "Z" seems to be working.Have not heard from you for some time so happy that when you post it is positive.Will be in my prayers for great scans comming.All the best to you.Beat the Beast. Al
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- July 20, 2012 at 6:14 pm
Great news that the "Z" seems to be working.Have not heard from you for some time so happy that when you post it is positive.Will be in my prayers for great scans comming.All the best to you.Beat the Beast. Al
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- July 20, 2012 at 6:14 pm
Great news that the "Z" seems to be working.Have not heard from you for some time so happy that when you post it is positive.Will be in my prayers for great scans comming.All the best to you.Beat the Beast. Al
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- July 20, 2012 at 7:12 pm
It's really great to hear from you, Kevin! I've been following your story,as well as many others. You are in my thoughts & prayers – same goes to all the other warriors!
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- July 20, 2012 at 7:12 pm
It's really great to hear from you, Kevin! I've been following your story,as well as many others. You are in my thoughts & prayers – same goes to all the other warriors!
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- July 20, 2012 at 7:12 pm
It's really great to hear from you, Kevin! I've been following your story,as well as many others. You are in my thoughts & prayers – same goes to all the other warriors!
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- July 20, 2012 at 7:13 pm
I hope you get great scan results, and that you have a durable response to Zelboraf.
Best wishes,
Harry
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- July 20, 2012 at 7:13 pm
I hope you get great scan results, and that you have a durable response to Zelboraf.
Best wishes,
Harry
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- July 20, 2012 at 7:13 pm
I hope you get great scan results, and that you have a durable response to Zelboraf.
Best wishes,
Harry
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- July 20, 2012 at 7:22 pm
Another milestone reached, Kevin…you're exactly right when you call it a "…new life started." The 180 our lives take after diagnosis takes time to adjust to, but it's strange how dates and moments will catch you offguard and feeling stunned again.
Hang in there. You are one HUGE inspiration to so many of us out here!
Cheering you on today and everyday,
Karen
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- July 20, 2012 at 7:22 pm
Another milestone reached, Kevin…you're exactly right when you call it a "…new life started." The 180 our lives take after diagnosis takes time to adjust to, but it's strange how dates and moments will catch you offguard and feeling stunned again.
Hang in there. You are one HUGE inspiration to so many of us out here!
Cheering you on today and everyday,
Karen
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- July 20, 2012 at 7:22 pm
Another milestone reached, Kevin…you're exactly right when you call it a "…new life started." The 180 our lives take after diagnosis takes time to adjust to, but it's strange how dates and moments will catch you offguard and feeling stunned again.
Hang in there. You are one HUGE inspiration to so many of us out here!
Cheering you on today and everyday,
Karen
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- July 21, 2012 at 4:04 am
I’m going on 4 months straight of being on Zelboraf. At first the 940mg was too hard on my body and I had to stop it twice. Now I’m on 720mg plus 5mg of Prednisone and doing much better. My main side effects were extreme sun sensitivity, joint pain, extreme body rash, tender bottoms of my feet (to the point I hobble), and erythema nodosum – painful red bumps that appear for about a week randomly on my arms and legs. The joint pain and body rash are just about under control thanks to the Prednisone but I still have the red bumps appearing, bottom of the foot (the padding of my feet) pain, and the extreme sun sensitivity.
My oncologist is pleased so far with my body’s reaction to the Zelboraf. All my tumors have stopped growing and some have started to shrink.
Best of luck ~ ScagMom -
- July 21, 2012 at 4:04 am
I’m going on 4 months straight of being on Zelboraf. At first the 940mg was too hard on my body and I had to stop it twice. Now I’m on 720mg plus 5mg of Prednisone and doing much better. My main side effects were extreme sun sensitivity, joint pain, extreme body rash, tender bottoms of my feet (to the point I hobble), and erythema nodosum – painful red bumps that appear for about a week randomly on my arms and legs. The joint pain and body rash are just about under control thanks to the Prednisone but I still have the red bumps appearing, bottom of the foot (the padding of my feet) pain, and the extreme sun sensitivity.
My oncologist is pleased so far with my body’s reaction to the Zelboraf. All my tumors have stopped growing and some have started to shrink.
Best of luck ~ ScagMom -
- July 21, 2012 at 4:04 am
I’m going on 4 months straight of being on Zelboraf. At first the 940mg was too hard on my body and I had to stop it twice. Now I’m on 720mg plus 5mg of Prednisone and doing much better. My main side effects were extreme sun sensitivity, joint pain, extreme body rash, tender bottoms of my feet (to the point I hobble), and erythema nodosum – painful red bumps that appear for about a week randomly on my arms and legs. The joint pain and body rash are just about under control thanks to the Prednisone but I still have the red bumps appearing, bottom of the foot (the padding of my feet) pain, and the extreme sun sensitivity.
My oncologist is pleased so far with my body’s reaction to the Zelboraf. All my tumors have stopped growing and some have started to shrink.
Best of luck ~ ScagMom -
- July 21, 2012 at 6:01 am
Hi Kevin,
Always great to hear from you – I was wondering how you were doing. That is wonderful that for the most part, you are feeling well and the Zelboraf is clearing having a positive impact. I can certainly understand your fears but sending good thoughts that those are put to rest with the next scans.
Wishing you continued success – you are always an inspriation!
Mary
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- July 21, 2012 at 6:01 am
Hi Kevin,
Always great to hear from you – I was wondering how you were doing. That is wonderful that for the most part, you are feeling well and the Zelboraf is clearing having a positive impact. I can certainly understand your fears but sending good thoughts that those are put to rest with the next scans.
Wishing you continued success – you are always an inspriation!
Mary
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- July 21, 2012 at 6:01 am
Hi Kevin,
Always great to hear from you – I was wondering how you were doing. That is wonderful that for the most part, you are feeling well and the Zelboraf is clearing having a positive impact. I can certainly understand your fears but sending good thoughts that those are put to rest with the next scans.
Wishing you continued success – you are always an inspriation!
Mary
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- July 21, 2012 at 4:16 pm
Kevin,
It's so good to hear your good news. May Zelboraf continue to work forever! Thanks for keeping us posted. You will continue to be in my prayers.
Tricia
I
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- July 23, 2012 at 12:51 pm
Hi KEvin,
As you can see from all the postings, everyone had been asking how you were doing and we were all hoping and praying things were working well for you. I am hopeful your brain MRI will be clear and you can relax, I know that is the hard part. So great that the zelboraf is working for you. I realize the sun sensitivity and stomach issues can be hard – but hopefully for the most part you feel better? You have been thru a lot, I wish and pray for all the best for you!
Please keep us posted on your MRi and scan results.
laurie from maine
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- July 23, 2012 at 12:51 pm
Hi KEvin,
As you can see from all the postings, everyone had been asking how you were doing and we were all hoping and praying things were working well for you. I am hopeful your brain MRI will be clear and you can relax, I know that is the hard part. So great that the zelboraf is working for you. I realize the sun sensitivity and stomach issues can be hard – but hopefully for the most part you feel better? You have been thru a lot, I wish and pray for all the best for you!
Please keep us posted on your MRi and scan results.
laurie from maine
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- July 23, 2012 at 12:51 pm
Hi KEvin,
As you can see from all the postings, everyone had been asking how you were doing and we were all hoping and praying things were working well for you. I am hopeful your brain MRI will be clear and you can relax, I know that is the hard part. So great that the zelboraf is working for you. I realize the sun sensitivity and stomach issues can be hard – but hopefully for the most part you feel better? You have been thru a lot, I wish and pray for all the best for you!
Please keep us posted on your MRi and scan results.
laurie from maine
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