› Forums › General Melanoma Community › BRAF/MEK Combo
- This topic has 21 replies, 6 voices, and was last updated 11 years, 10 months ago by
dhrahn.
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- January 24, 2014 at 5:23 pm
Hello All
It has been a long time since I have been on this site. WOW!!!! What a lot of changes. Back in 2010 (seems like a lifetime ago) when I was first learned that I had Melanoma this is where I came to learn about what was in store for my new life. After a while details of other lives became more than I could handle so I took a break. Now I am back – Thankfully not with bad news, but to share. First let me say that while I know not everyone that was here when I departed, sadly did not survive, it is nice to see some familiar names still roaming the pages.
As you probably already know the BRAF/MEK combo is about to become FDA approved. I have been on this trial now for 38 months and counting. Which in my mind debunks the origional reports that the drug did not work for long periods of time. Before everyone jumps down my throat…I know not everyone has had the same success but I am living, breathing proof that it definetly works for some. And from what I am hearing the numbers are growing.
Because of my fortunate success with this combo, this coming Tuesday I have been asked to come to Moffitt Cancer Center and speak with the govenor of the State of Florida…Rick Scott…(personal opion aside) about my experience with this drug combo. From what I have been told he will be putting some funding in place for Melanoma (and other cancers I am sure) at Moffitt. While I have know idea where all of that will lead by the time it actually comes to pass, it is very exciting and a honor to be asked to speak about my experience.
I would love to hear from others out there that have been on the trial, to hear about your experiences and just to let everyone know that there is hope on horizion.
Looking forward to hearing from you all. 🙂
Dawn Dion
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- January 24, 2014 at 6:21 pm
Dawn, thanks for posting. I love hearing from people that have been on this combo for a long time (did you get to NED?). I've posted on the combo on a number of occasions. I've been on it since August (6 mos) as my initial Stage IV treatment (yes, prior to approval–I have a forward thinking doctor). I had a heavy tumor burden, which the combo has helped reduce significantly (in the range of 50-75% depending on the tumor). I've had minimal side effects. As far as I'm concerned these are miracle drugs.
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- January 24, 2014 at 6:21 pm
Dawn, thanks for posting. I love hearing from people that have been on this combo for a long time (did you get to NED?). I've posted on the combo on a number of occasions. I've been on it since August (6 mos) as my initial Stage IV treatment (yes, prior to approval–I have a forward thinking doctor). I had a heavy tumor burden, which the combo has helped reduce significantly (in the range of 50-75% depending on the tumor). I've had minimal side effects. As far as I'm concerned these are miracle drugs.
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- January 24, 2014 at 6:21 pm
Dawn, thanks for posting. I love hearing from people that have been on this combo for a long time (did you get to NED?). I've posted on the combo on a number of occasions. I've been on it since August (6 mos) as my initial Stage IV treatment (yes, prior to approval–I have a forward thinking doctor). I had a heavy tumor burden, which the combo has helped reduce significantly (in the range of 50-75% depending on the tumor). I've had minimal side effects. As far as I'm concerned these are miracle drugs.
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- January 25, 2014 at 3:18 am
Congratulations Dawn that's fantastic news!!
I have been on the combo since August 2013 & have had one PET scan which showed NED. However my dr reduced dosage of Dabrafenib to 200mgs day because I ws having pains in legs & joints. I'm now free of side – effects but worry the reduced dosage will affect the efficacy of the treatment. Am due to have scans soon & wonder if arm pain I'm currently experiencing is related to Mel being back!
Do you or anyone else know of anyone who has been on reduced dosage too? Hope you continue with your wonderful results.
best wishes, Lyn
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- January 25, 2014 at 3:18 am
Congratulations Dawn that's fantastic news!!
I have been on the combo since August 2013 & have had one PET scan which showed NED. However my dr reduced dosage of Dabrafenib to 200mgs day because I ws having pains in legs & joints. I'm now free of side – effects but worry the reduced dosage will affect the efficacy of the treatment. Am due to have scans soon & wonder if arm pain I'm currently experiencing is related to Mel being back!
Do you or anyone else know of anyone who has been on reduced dosage too? Hope you continue with your wonderful results.
best wishes, Lyn
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- January 25, 2014 at 3:18 am
Congratulations Dawn that's fantastic news!!
I have been on the combo since August 2013 & have had one PET scan which showed NED. However my dr reduced dosage of Dabrafenib to 200mgs day because I ws having pains in legs & joints. I'm now free of side – effects but worry the reduced dosage will affect the efficacy of the treatment. Am due to have scans soon & wonder if arm pain I'm currently experiencing is related to Mel being back!
Do you or anyone else know of anyone who has been on reduced dosage too? Hope you continue with your wonderful results.
best wishes, Lyn
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- January 25, 2014 at 6:56 am
Hi-
Does anybody know or have experience with trying this combo after being on zelboraf? My husband was on zelboraf for about 11 months with great success. As his tumors started to grow we switched over to yervoy. We've heard that if you have already been/tolerated the BRAF gene you may only get 1-2 months until things start growing again.
Thanks for any info!
Holly
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- January 25, 2014 at 6:56 am
Hi-
Does anybody know or have experience with trying this combo after being on zelboraf? My husband was on zelboraf for about 11 months with great success. As his tumors started to grow we switched over to yervoy. We've heard that if you have already been/tolerated the BRAF gene you may only get 1-2 months until things start growing again.
Thanks for any info!
Holly
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- January 25, 2014 at 11:56 am
Hi, Holly-
I think the problem that you are referring to is that for about 50% of patients, once the melanoma becomes resistant to Zeboraf it seems to become more agressive than it was. New tumors form and grow faster than the Yervoy can work. If the patient had a lot of tumors to start with, that can be a serious problem. One thing to look at is your husband's LDH levels– if they are more than twice the maximum normal range (every lab seems to use a different "normal" range for LDH) then yervoy after Zelboraf is not a good idea. It might be better to try him on the Tafinlar + MEK combo first. If that works, switch to Yervoy before the tumors become resistant again.
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- January 25, 2014 at 11:56 am
Hi, Holly-
I think the problem that you are referring to is that for about 50% of patients, once the melanoma becomes resistant to Zeboraf it seems to become more agressive than it was. New tumors form and grow faster than the Yervoy can work. If the patient had a lot of tumors to start with, that can be a serious problem. One thing to look at is your husband's LDH levels– if they are more than twice the maximum normal range (every lab seems to use a different "normal" range for LDH) then yervoy after Zelboraf is not a good idea. It might be better to try him on the Tafinlar + MEK combo first. If that works, switch to Yervoy before the tumors become resistant again.
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- January 25, 2014 at 11:56 am
Hi, Holly-
I think the problem that you are referring to is that for about 50% of patients, once the melanoma becomes resistant to Zeboraf it seems to become more agressive than it was. New tumors form and grow faster than the Yervoy can work. If the patient had a lot of tumors to start with, that can be a serious problem. One thing to look at is your husband's LDH levels– if they are more than twice the maximum normal range (every lab seems to use a different "normal" range for LDH) then yervoy after Zelboraf is not a good idea. It might be better to try him on the Tafinlar + MEK combo first. If that works, switch to Yervoy before the tumors become resistant again.
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- January 25, 2014 at 8:42 pm
Hi Holly,
I am stage 4 and have done Ipi and Zelboraf. Ipi didn't work at all for me and Zelboraf did for a couple months and then the lung tumors started to grow faster and more of them. After hearing the Dabrafenib/Mekinist combination was approved on January 10, I called Mayo Clinic in Rochester and have an appointment with them on Tueday. From what I have been hearing, there shouldn't be any problem going from Zelboraf to this combination but will find out for sure on Tuesday. I will keep you posted and would appreciate it if you would post more as you hear as well. Good luck to you and your husband.
Sandy
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- January 25, 2014 at 8:42 pm
Hi Holly,
I am stage 4 and have done Ipi and Zelboraf. Ipi didn't work at all for me and Zelboraf did for a couple months and then the lung tumors started to grow faster and more of them. After hearing the Dabrafenib/Mekinist combination was approved on January 10, I called Mayo Clinic in Rochester and have an appointment with them on Tueday. From what I have been hearing, there shouldn't be any problem going from Zelboraf to this combination but will find out for sure on Tuesday. I will keep you posted and would appreciate it if you would post more as you hear as well. Good luck to you and your husband.
Sandy
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- January 25, 2014 at 8:42 pm
Hi Holly,
I am stage 4 and have done Ipi and Zelboraf. Ipi didn't work at all for me and Zelboraf did for a couple months and then the lung tumors started to grow faster and more of them. After hearing the Dabrafenib/Mekinist combination was approved on January 10, I called Mayo Clinic in Rochester and have an appointment with them on Tueday. From what I have been hearing, there shouldn't be any problem going from Zelboraf to this combination but will find out for sure on Tuesday. I will keep you posted and would appreciate it if you would post more as you hear as well. Good luck to you and your husband.
Sandy
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- January 26, 2014 at 2:39 am
Thank you Sandy!! Yes please keep me posted. We are currently signed up to do a trial at The Angeles clinic in Los Angeles. It is a antibody component of MSB0010445 as well as stereotactic body radiosurgery. If this doesn't work we will be going to the dabrafenib/mekinist combo until we can get our hands on pd1. Hopefully soon!! Best of luck to you as well!!
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- January 26, 2014 at 2:39 am
Thank you Sandy!! Yes please keep me posted. We are currently signed up to do a trial at The Angeles clinic in Los Angeles. It is a antibody component of MSB0010445 as well as stereotactic body radiosurgery. If this doesn't work we will be going to the dabrafenib/mekinist combo until we can get our hands on pd1. Hopefully soon!! Best of luck to you as well!!
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- January 26, 2014 at 2:39 am
Thank you Sandy!! Yes please keep me posted. We are currently signed up to do a trial at The Angeles clinic in Los Angeles. It is a antibody component of MSB0010445 as well as stereotactic body radiosurgery. If this doesn't work we will be going to the dabrafenib/mekinist combo until we can get our hands on pd1. Hopefully soon!! Best of luck to you as well!!
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- January 25, 2014 at 6:56 am
Hi-
Does anybody know or have experience with trying this combo after being on zelboraf? My husband was on zelboraf for about 11 months with great success. As his tumors started to grow we switched over to yervoy. We've heard that if you have already been/tolerated the BRAF gene you may only get 1-2 months until things start growing again.
Thanks for any info!
Holly
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