› Forums › General Melanoma Community › Progression on Zelboraf – What Next?
- This topic has 30 replies, 7 voices, and was last updated 13 years, 1 month ago by
o2bcheri.
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- October 30, 2012 at 1:01 pm
Hello All,
My fiance, Kaitlyn, has been on Zelboraf since July 20. Well, last week we started noticing some new growths in various different areas. Not only that, but they seem to be growing fast.
Now we're trying to figure out what's next for her? Are there really any other decent options? She's been on IL-2 and Ipi. She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again.
Hello All,
My fiance, Kaitlyn, has been on Zelboraf since July 20. Well, last week we started noticing some new growths in various different areas. Not only that, but they seem to be growing fast.
Now we're trying to figure out what's next for her? Are there really any other decent options? She's been on IL-2 and Ipi. She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again.
Has anyone tried the combo of Temodar + Ipilimumab? I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up. When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.
Any advice would be greatly appreciated.
Thank you,
Travis
- Replies
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- October 30, 2012 at 6:20 pm
You might want to look at the braf/mek combo. You can see a webinar on it here: http://www.melanomainternational.org/news/dualtherapy1.html
It seems to be more durable than zelboraf alone. Temodar is a type of dacarbazine and an older drug. She might do well on this and the braf in the combo has some brain met activity.
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- October 30, 2012 at 8:10 pm
You could try an anti-pd1 trial also. I started Z end of May and was on it until mid Sept when my scan showed progression. I felt like the tumor grew pretty fast! I did surgery to remove it. Now on Ipi. Have had 2 doses so far…
Best of luck!
Erin
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- October 30, 2012 at 8:10 pm
You could try an anti-pd1 trial also. I started Z end of May and was on it until mid Sept when my scan showed progression. I felt like the tumor grew pretty fast! I did surgery to remove it. Now on Ipi. Have had 2 doses so far…
Best of luck!
Erin
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- October 30, 2012 at 8:10 pm
You could try an anti-pd1 trial also. I started Z end of May and was on it until mid Sept when my scan showed progression. I felt like the tumor grew pretty fast! I did surgery to remove it. Now on Ipi. Have had 2 doses so far…
Best of luck!
Erin
-
- October 30, 2012 at 6:20 pm
You might want to look at the braf/mek combo. You can see a webinar on it here: http://www.melanomainternational.org/news/dualtherapy1.html
It seems to be more durable than zelboraf alone. Temodar is a type of dacarbazine and an older drug. She might do well on this and the braf in the combo has some brain met activity.
-
- October 30, 2012 at 6:20 pm
You might want to look at the braf/mek combo. You can see a webinar on it here: http://www.melanomainternational.org/news/dualtherapy1.html
It seems to be more durable than zelboraf alone. Temodar is a type of dacarbazine and an older drug. She might do well on this and the braf in the combo has some brain met activity.
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- October 30, 2012 at 8:53 pm
HI Travis,
Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife?
Stay positive and keep fighting.
Nahmi
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- October 30, 2012 at 8:53 pm
HI Travis,
Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife?
Stay positive and keep fighting.
Nahmi
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- October 30, 2012 at 8:53 pm
HI Travis,
Sorry to hear that Zel has stopped working. The concern is that once the Zel stops the disease moves quickly. I dont mean to say that to scare you, but I would be ready to fight hard. With brain mets I would try Temodar/IPI combo. Are the brain mets small? Could she try gamma knife?
Stay positive and keep fighting.
Nahmi
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- October 30, 2012 at 11:12 pm
I have grown tumors on every thing I have tried- including 4 clinical trials. I am still here. My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over. You never know what will help. Even failures. Don't give up. God Bless.
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- October 30, 2012 at 11:12 pm
I have grown tumors on every thing I have tried- including 4 clinical trials. I am still here. My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over. You never know what will help. Even failures. Don't give up. God Bless.
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- October 30, 2012 at 11:12 pm
I have grown tumors on every thing I have tried- including 4 clinical trials. I am still here. My oncologist thinks one of them "sort of helped", meaning I am alive but have tumors all over. You never know what will help. Even failures. Don't give up. God Bless.
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- October 31, 2012 at 1:00 pm
Hey Everyone,
Thank you for your thoughts and advice. I am looking into PD-1 and a couple other trials. The only problem is, we don't know if her brain mets have progressed. If so, that makes things even more difficult.
Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive. We speak with her oncologist on Friday. Even that feels like an eternity away.
Again, thank you all for your help and kind words. Hopefully something comes up that helps.
Travis
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- October 31, 2012 at 2:06 pm
Hi, Trevor,
My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.
Please keep sharing – I'll do the same.
All best,
Caretaker
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- November 2, 2012 at 1:23 am
hi…
i am so sorry to hear this…
when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…
i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is
healing a lot of people with only good side effects…
it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site
and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the
results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..
if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…
sending big hugs and hope for healing..
xxxx
-
- November 2, 2012 at 1:23 am
hi…
i am so sorry to hear this…
when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…
i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is
healing a lot of people with only good side effects…
it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site
and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the
results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..
if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…
sending big hugs and hope for healing..
xxxx
-
- November 2, 2012 at 4:03 pm
no.. this is not a spam… its real… i know several people personally who have healed from it..
i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…
its all natural. cannot hurt.. the people are wonderful… are not about $$ at all…
the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..
it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed….
as i said… the owner of the co even offered to give it to my daughter at no cost for her MS.. he is a wonderful human being…
another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…
she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful…
there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..
the website is very outdated… because they are understaffed.. and spend their time helping people ..
i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..
it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone…
no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…
XXX and prayers for everyone here…
-
- November 2, 2012 at 4:03 pm
no.. this is not a spam… its real… i know several people personally who have healed from it..
i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…
its all natural. cannot hurt.. the people are wonderful… are not about $$ at all…
the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..
it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed….
as i said… the owner of the co even offered to give it to my daughter at no cost for her MS.. he is a wonderful human being…
another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…
she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful…
there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..
the website is very outdated… because they are understaffed.. and spend their time helping people ..
i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..
it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone…
no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…
XXX and prayers for everyone here…
-
- November 2, 2012 at 4:03 pm
no.. this is not a spam… its real… i know several people personally who have healed from it..
i have nothing to do with this company… i am just trying to help those who are not being helped by the chemo…
its all natural. cannot hurt.. the people are wonderful… are not about $$ at all…
the man who created it was not supposed to be alive over 30 yrs ago.. pancreatic cancer… there is a FB page..
it is real… i am sure it is not a for SURE cure… but worth a try when all else has failed….
as i said… the owner of the co even offered to give it to my daughter at no cost for her MS.. he is a wonderful human being…
another girl named jen nash kasuga was healed of aggressive brain cancer.. she had it for 9 yrs… had chemo.. radiation. surgeries… and the Cellect has done the trick.. she has been cancer free for nearly 2 yrs now…
she is willing to talk to anyone who wishes to speak to her… she is lovely.. young.. and very helpful…
there are some testimonials on the website of http://www.ncrf.org about skin cancers.. melanoma..
the website is very outdated… because they are understaffed.. and spend their time helping people ..
i keep posting about this for one reason… that is because i have been following this product results for some time now.. and i see healings all the time.. not for everyone… but if caught early… very good percentage of healings..
it works better if no chemo has been used as chemo destroys the immune system… and rarely heals anyone…
no one ever seems to call fred and at least give him a chance to help.. which i do not understand when all other options are gone… its sad to me…
XXX and prayers for everyone here…
-
- November 2, 2012 at 1:23 am
hi…
i am so sorry to hear this…
when the treatments do not work.. we need to get creative and find the answer… and i do think there can be a healing with this…
i have been doing serious research for my friend who has melanoma.. and have found something that is natural that is
healing a lot of people with only good side effects…
it is called Cellect… and you can read about it and find it on the website http://www.ncrf.org.. national cancer research foundation… i am not a part of this company in any way.. but have had conversations with the creator of this site
and the supplement Cellect.. it is worth investigating.. they are wonderful people.. they will not lie to you about the
results this Cellect has… they have even offereed to give this to my daughter since she has MS and is a student with limited income..
if i came down with any form of cancer.. this is the route i would take… the treatments are poison.. they do not work generally… and please please give this man a call.. it is worth a shot.. sounds like its time to get proactive and creative…
sending big hugs and hope for healing..
xxxx
-
- October 31, 2012 at 2:06 pm
Hi, Trevor,
My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.
Please keep sharing – I'll do the same.
All best,
Caretaker
-
- October 31, 2012 at 2:06 pm
Hi, Trevor,
My dear husband is in a similar position (please see thread "Need Help"). Our oncologist refuses to see him before the previously set-up appt. still 12 DAYS AWAY. I swear that woman has no heart.
Please keep sharing – I'll do the same.
All best,
Caretaker
-
- October 31, 2012 at 1:00 pm
Hey Everyone,
Thank you for your thoughts and advice. I am looking into PD-1 and a couple other trials. The only problem is, we don't know if her brain mets have progressed. If so, that makes things even more difficult.
Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive. We speak with her oncologist on Friday. Even that feels like an eternity away.
Again, thank you all for your help and kind words. Hopefully something comes up that helps.
Travis
-
- October 31, 2012 at 1:00 pm
Hey Everyone,
Thank you for your thoughts and advice. I am looking into PD-1 and a couple other trials. The only problem is, we don't know if her brain mets have progressed. If so, that makes things even more difficult.
Nahmi, you are right it seems, her tumors seem to have gotten much more aggressive. We speak with her oncologist on Friday. Even that feels like an eternity away.
Again, thank you all for your help and kind words. Hopefully something comes up that helps.
Travis
-
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