› Forums › General Melanoma Community › Some good news
- This topic has 18 replies, 5 voices, and was last updated 9 years, 11 months ago by
Polymath.
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- May 30, 2014 at 12:51 pm
Yesterday I got the result of the Braf re-test and I'm positive this time. I hope I can slow down this monster with the targeted therapy, hopefully my adrenals will behave in the meantime and I can do TIL! My shoulder is starting to really bother me.
Prayers ,
Dana
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- May 30, 2014 at 4:03 pm
Congrats!!!! Idk if i'm BRAF or not but am starting on Yervoy in a couple weeks..Stage 3 C..
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- May 30, 2014 at 4:03 pm
Congrats!!!! Idk if i'm BRAF or not but am starting on Yervoy in a couple weeks..Stage 3 C..
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- May 30, 2014 at 4:03 pm
Congrats!!!! Idk if i'm BRAF or not but am starting on Yervoy in a couple weeks..Stage 3 C..
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- May 30, 2014 at 4:49 pm
Interesting that you were positive on retest, glad to hear that it's an option for you now. Have you discussed with your medical oncologist which BRAF inhibitor you're going to use and if you'll be doing a combination of BRAF and MEK or just BRAF "straight up"?
I'm curious what other's might know on this topic. Are there any clear reasons to use vemurafenib or dabrafenib? And since the dabrefenib/trametinib BRAF/MEK combo are also approved therapies, is it always given now in combination (and if so, why not)?
As far as your shoulder, when will you be seeing your radiation and orthopedic oncologists to discuss options for the shoulder met?
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- May 30, 2014 at 4:49 pm
Interesting that you were positive on retest, glad to hear that it's an option for you now. Have you discussed with your medical oncologist which BRAF inhibitor you're going to use and if you'll be doing a combination of BRAF and MEK or just BRAF "straight up"?
I'm curious what other's might know on this topic. Are there any clear reasons to use vemurafenib or dabrafenib? And since the dabrefenib/trametinib BRAF/MEK combo are also approved therapies, is it always given now in combination (and if so, why not)?
As far as your shoulder, when will you be seeing your radiation and orthopedic oncologists to discuss options for the shoulder met?
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- May 30, 2014 at 4:49 pm
Interesting that you were positive on retest, glad to hear that it's an option for you now. Have you discussed with your medical oncologist which BRAF inhibitor you're going to use and if you'll be doing a combination of BRAF and MEK or just BRAF "straight up"?
I'm curious what other's might know on this topic. Are there any clear reasons to use vemurafenib or dabrafenib? And since the dabrefenib/trametinib BRAF/MEK combo are also approved therapies, is it always given now in combination (and if so, why not)?
As far as your shoulder, when will you be seeing your radiation and orthopedic oncologists to discuss options for the shoulder met?
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- May 30, 2014 at 5:30 pm
Great news Dana! I'm sure you've seen posts from me and others re: the GSK combo. While everyone is different, my side effects have been minor and manageable, e.g., I've never missed a day of work (or with family) due to side effects from the combo.
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- May 30, 2014 at 10:17 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemerafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
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- May 30, 2014 at 10:17 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemerafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
-
- May 30, 2014 at 10:17 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemerafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
-
- May 30, 2014 at 10:23 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemurafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
-
- May 30, 2014 at 10:23 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemurafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
-
- May 30, 2014 at 10:23 pm
Hi Dana and others, First time posting here, but been through a lot over last 15 months since original diagnosis. Discovering this board has been a blessing.
Specifically, I am BRAF positive and after going Stage IV and done with surgeries, I did Vemurafenib (Zelboraf) first with amazing results as far as tumor elimination, but with really awful side-effects. Really only lasted 3 months before progressing. Now starting 3rd month of the MEK/TAF combo. Its been a relief with almost no side-effects whatsoever, and I've mostly recovered from the ZEL side-effects. BUT, the combo has only managed to hold my tumors stable, not shrink or eliminate. I guess I'm not really responding but stable is better than progressing and since I look and feel great again, I'll take it. Seems there are no hard and fast rules. Everyone seems to react differently. I'll be moving on to Yervoy next and can only hope I respond to that. Hope you are a responder and your treatment is effective. best to you and yours.
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- May 30, 2014 at 10:07 pm
My Husband is BRaf positive (600E) and although Vemurafenib (Zelboraf) is the drug currently aproved as main treatment in our province (Alberta), he was prescribed Dabrafenib (Tafinlar). He is on it for 14 days now, he had several side effects, none of them lasted more than one day and none of them stopped him from going to work full time and enjoy his life.
My understanding is that the side effects from Dabrafenib are nowhere near as bad as the side effects from Vemurafenib.
I am a little surprised they retested and find you BRaf positive, but I'm very happy for you, hopefully the BRaf meds will shrink your tumours significantly and give your adrenals some time to heal until.
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- May 30, 2014 at 10:07 pm
My Husband is BRaf positive (600E) and although Vemurafenib (Zelboraf) is the drug currently aproved as main treatment in our province (Alberta), he was prescribed Dabrafenib (Tafinlar). He is on it for 14 days now, he had several side effects, none of them lasted more than one day and none of them stopped him from going to work full time and enjoy his life.
My understanding is that the side effects from Dabrafenib are nowhere near as bad as the side effects from Vemurafenib.
I am a little surprised they retested and find you BRaf positive, but I'm very happy for you, hopefully the BRaf meds will shrink your tumours significantly and give your adrenals some time to heal until.
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- May 30, 2014 at 10:07 pm
My Husband is BRaf positive (600E) and although Vemurafenib (Zelboraf) is the drug currently aproved as main treatment in our province (Alberta), he was prescribed Dabrafenib (Tafinlar). He is on it for 14 days now, he had several side effects, none of them lasted more than one day and none of them stopped him from going to work full time and enjoy his life.
My understanding is that the side effects from Dabrafenib are nowhere near as bad as the side effects from Vemurafenib.
I am a little surprised they retested and find you BRaf positive, but I'm very happy for you, hopefully the BRaf meds will shrink your tumours significantly and give your adrenals some time to heal until.
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