› Forums › General Melanoma Community › To anyone following my progress..
- This topic has 30 replies, 8 voices, and was last updated 11 years, 9 months ago by
Snickers60.
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- July 25, 2012 at 5:46 pm
I talked to the radiation oncologist this morning, the decision to stay on Zelboraf until we know for certain what's going on inside my body was made.
A "detailed" MRI has been ordered for next week to give a clearer picture to show how many/much of the tumors in the brain are new, active and growing and which, if any are just necrosis.
I talked to the radiation oncologist this morning, the decision to stay on Zelboraf until we know for certain what's going on inside my body was made.
A "detailed" MRI has been ordered for next week to give a clearer picture to show how many/much of the tumors in the brain are new, active and growing and which, if any are just necrosis.
A PETCT has also been ordered for next week to show the status of my body, and give insight to whether these news ones in my head are being seeded by something in my body or were there before I started Zelboraf but too small to see. The scan will also show if Zelboraf is even still working.
Depending on the scans, SRS or WBR will take place regardless, and the decision to stay on Zelboraf or trying IL-2 again in the future if all goes well will be made.
So now I just wait for scans.
Until then, thank you all for the continuous thoughts and support. 🙂
-Kevin
- Replies
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- July 25, 2012 at 6:28 pm
Thanks for posting the update! Extra prayers are being said for you. BTW, was it you in the video I had seen on the news in San Diego from early May? The guy looked like you, and his last name started with a K.
Take care, and rest up!
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- July 25, 2012 at 6:28 pm
Thanks for posting the update! Extra prayers are being said for you. BTW, was it you in the video I had seen on the news in San Diego from early May? The guy looked like you, and his last name started with a K.
Take care, and rest up!
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- July 25, 2012 at 11:01 pm
🙂 Yeah that was me, I was hesitant to share it with people because my face was so swollen from the steroid I was on at the time. I look about 50 lbs overweight and I was a bit embarrassed. Plus the reporter seemed to get some of the facts wrong, and the way they edited mine and my Dr.s answers with their questions was kind of disappointing. But the message got out there and I guess that's what matters most.
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- July 25, 2012 at 11:01 pm
🙂 Yeah that was me, I was hesitant to share it with people because my face was so swollen from the steroid I was on at the time. I look about 50 lbs overweight and I was a bit embarrassed. Plus the reporter seemed to get some of the facts wrong, and the way they edited mine and my Dr.s answers with their questions was kind of disappointing. But the message got out there and I guess that's what matters most.
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- July 25, 2012 at 11:01 pm
🙂 Yeah that was me, I was hesitant to share it with people because my face was so swollen from the steroid I was on at the time. I look about 50 lbs overweight and I was a bit embarrassed. Plus the reporter seemed to get some of the facts wrong, and the way they edited mine and my Dr.s answers with their questions was kind of disappointing. But the message got out there and I guess that's what matters most.
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- July 25, 2012 at 6:28 pm
Thanks for posting the update! Extra prayers are being said for you. BTW, was it you in the video I had seen on the news in San Diego from early May? The guy looked like you, and his last name started with a K.
Take care, and rest up!
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- July 25, 2012 at 6:54 pm
Hi Kevin,
Are you taking "Z" as part of a trial??? If so, if you have new brain mets, will you have to stop the trial???
You might want to do a "search" for a new trial for "brain mets". Just my 2 cents.
I hope that you scans go well. This must be nerve racking for you to have to wait until next week. You think that your doc would have put a "STAT" on you scans.
Kathy
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- July 25, 2012 at 11:04 pm
Nope, no trial, just a regular prescription. Still searching for possible trials..
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- July 25, 2012 at 11:04 pm
Nope, no trial, just a regular prescription. Still searching for possible trials..
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- July 25, 2012 at 11:04 pm
Nope, no trial, just a regular prescription. Still searching for possible trials..
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- July 25, 2012 at 6:54 pm
Hi Kevin,
Are you taking "Z" as part of a trial??? If so, if you have new brain mets, will you have to stop the trial???
You might want to do a "search" for a new trial for "brain mets". Just my 2 cents.
I hope that you scans go well. This must be nerve racking for you to have to wait until next week. You think that your doc would have put a "STAT" on you scans.
Kathy
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- July 25, 2012 at 6:54 pm
Hi Kevin,
Are you taking "Z" as part of a trial??? If so, if you have new brain mets, will you have to stop the trial???
You might want to do a "search" for a new trial for "brain mets". Just my 2 cents.
I hope that you scans go well. This must be nerve racking for you to have to wait until next week. You think that your doc would have put a "STAT" on you scans.
Kathy
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- July 25, 2012 at 10:17 pm
Hi Kevin Dabrafenib is the GSK version of Zelboraf. It appears phase 1 Trials indicate it works in the brain as well. They are also trialing it with their own MEK drug so maybe if your Doc says to stay on BRAF you switch to this combo as an alternative. Here are the trial results.
best wishes
James
http://www.reuters.com/article/2012/05/18/us-melanoma-gsk-dabrafenib-idUSBRE84H01G20120518
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- July 25, 2012 at 10:17 pm
Hi Kevin Dabrafenib is the GSK version of Zelboraf. It appears phase 1 Trials indicate it works in the brain as well. They are also trialing it with their own MEK drug so maybe if your Doc says to stay on BRAF you switch to this combo as an alternative. Here are the trial results.
best wishes
James
http://www.reuters.com/article/2012/05/18/us-melanoma-gsk-dabrafenib-idUSBRE84H01G20120518
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- July 25, 2012 at 11:10 pm
Thanks James, I've looked into Dabrafenib on clinicaltrials.gov and appears the few that enrolling won't accept people with progressing brain mets. :/ Understandably it seems this is the case with most trials, usually they want them SRSed or "stable" for 12 weeks. Guess I'll see where I'm at in 12 weeks…
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- July 25, 2012 at 11:10 pm
Thanks James, I've looked into Dabrafenib on clinicaltrials.gov and appears the few that enrolling won't accept people with progressing brain mets. :/ Understandably it seems this is the case with most trials, usually they want them SRSed or "stable" for 12 weeks. Guess I'll see where I'm at in 12 weeks…
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- July 25, 2012 at 11:23 pm
Hang in there Kevin *hugs*. You have a game plan and that's always a good thing. Keep us posted on your results when you can. For what it is worth, my onc. had suggested possibly doing IL2 again for my recent issues since I had such a good response first time around, but I chose IPI instead. I just had too many long term side affects from the IL2 to be comfortable going that route again.
Karin
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- July 25, 2012 at 11:23 pm
Hang in there Kevin *hugs*. You have a game plan and that's always a good thing. Keep us posted on your results when you can. For what it is worth, my onc. had suggested possibly doing IL2 again for my recent issues since I had such a good response first time around, but I chose IPI instead. I just had too many long term side affects from the IL2 to be comfortable going that route again.
Karin
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- July 26, 2012 at 12:21 pm
Hi Kevin,
I imagine it is hard for you to have to wait to next week to get scans done. I am hopeful the brain mets can be easily zapped and put behind you. I know it is hard to not know what you do next. I hope you know that this forum is full of people who are pulling so hard for you. I love that everyone is quick to post any new trials or drugs that they feel may help, thou that can be overwhelming at times too. It sounds like you have a great doctor who you believe in and that is a huge part. You also have your heart and strength which is so strong,.
I have been watching Bristol Myers site and there somes to be the possiblity of PD-1 trial coming out in fall but I believe it is very small trial, but I am hopeful even if that one is filled quick that another will be coming after that. You are right that the brain has to be not an issue for the trials, and I think 4 weeks past last radiation (I know this as I sit here waiting for my zapped brain met to calm down and will be starting radiation on my shoulder so my options are slim at moment ).
Take care and know we are all here pulling for you.
laurie from maine
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- July 26, 2012 at 12:21 pm
Hi Kevin,
I imagine it is hard for you to have to wait to next week to get scans done. I am hopeful the brain mets can be easily zapped and put behind you. I know it is hard to not know what you do next. I hope you know that this forum is full of people who are pulling so hard for you. I love that everyone is quick to post any new trials or drugs that they feel may help, thou that can be overwhelming at times too. It sounds like you have a great doctor who you believe in and that is a huge part. You also have your heart and strength which is so strong,.
I have been watching Bristol Myers site and there somes to be the possiblity of PD-1 trial coming out in fall but I believe it is very small trial, but I am hopeful even if that one is filled quick that another will be coming after that. You are right that the brain has to be not an issue for the trials, and I think 4 weeks past last radiation (I know this as I sit here waiting for my zapped brain met to calm down and will be starting radiation on my shoulder so my options are slim at moment ).
Take care and know we are all here pulling for you.
laurie from maine
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- July 27, 2012 at 4:35 pm
KEV, so sorry you have to WAIT so long to learn test results. The WAITING is the hardest part to us. I pray you
get good results and knowledge of what can be done in a speedy manner.
You have been such an encouragement to so many here – especially me !
HERE'S WISHING THE VERY BEST FOR YOU –
Update us as soon as you know OK !
Nancy (devoted wife of 3 X Warrior Wayne)
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- July 27, 2012 at 4:35 pm
KEV, so sorry you have to WAIT so long to learn test results. The WAITING is the hardest part to us. I pray you
get good results and knowledge of what can be done in a speedy manner.
You have been such an encouragement to so many here – especially me !
HERE'S WISHING THE VERY BEST FOR YOU –
Update us as soon as you know OK !
Nancy (devoted wife of 3 X Warrior Wayne)
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- July 27, 2012 at 4:35 pm
KEV, so sorry you have to WAIT so long to learn test results. The WAITING is the hardest part to us. I pray you
get good results and knowledge of what can be done in a speedy manner.
You have been such an encouragement to so many here – especially me !
HERE'S WISHING THE VERY BEST FOR YOU –
Update us as soon as you know OK !
Nancy (devoted wife of 3 X Warrior Wayne)
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- July 26, 2012 at 12:21 pm
Hi Kevin,
I imagine it is hard for you to have to wait to next week to get scans done. I am hopeful the brain mets can be easily zapped and put behind you. I know it is hard to not know what you do next. I hope you know that this forum is full of people who are pulling so hard for you. I love that everyone is quick to post any new trials or drugs that they feel may help, thou that can be overwhelming at times too. It sounds like you have a great doctor who you believe in and that is a huge part. You also have your heart and strength which is so strong,.
I have been watching Bristol Myers site and there somes to be the possiblity of PD-1 trial coming out in fall but I believe it is very small trial, but I am hopeful even if that one is filled quick that another will be coming after that. You are right that the brain has to be not an issue for the trials, and I think 4 weeks past last radiation (I know this as I sit here waiting for my zapped brain met to calm down and will be starting radiation on my shoulder so my options are slim at moment ).
Take care and know we are all here pulling for you.
laurie from maine
-
- July 25, 2012 at 11:23 pm
Hang in there Kevin *hugs*. You have a game plan and that's always a good thing. Keep us posted on your results when you can. For what it is worth, my onc. had suggested possibly doing IL2 again for my recent issues since I had such a good response first time around, but I chose IPI instead. I just had too many long term side affects from the IL2 to be comfortable going that route again.
Karin
-
- July 25, 2012 at 11:10 pm
Thanks James, I've looked into Dabrafenib on clinicaltrials.gov and appears the few that enrolling won't accept people with progressing brain mets. :/ Understandably it seems this is the case with most trials, usually they want them SRSed or "stable" for 12 weeks. Guess I'll see where I'm at in 12 weeks…
-
- July 25, 2012 at 10:17 pm
Hi Kevin Dabrafenib is the GSK version of Zelboraf. It appears phase 1 Trials indicate it works in the brain as well. They are also trialing it with their own MEK drug so maybe if your Doc says to stay on BRAF you switch to this combo as an alternative. Here are the trial results.
best wishes
James
http://www.reuters.com/article/2012/05/18/us-melanoma-gsk-dabrafenib-idUSBRE84H01G20120518
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