› Forums › General Melanoma Community › horrible news, failing BRAF
- This topic has 36 replies, 10 voices, and was last updated 12 years, 5 months ago by
NYKaren.
- Post
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- November 17, 2011 at 5:19 pm
Hi y'all,
After 3 months, I'm failing BRAF. Lung refilled and had to be drained this past Monday, terrible arthritis in my right wrist kept me awake Sunday into Monday.
Dr. Peri is coordinating with Dr. Sharfman at Johns Hopkins. They are going to have me change my dose: high a.m., lower p.m. + low dose steroids for the pain in the joints.
I go back on 12/1 (if not sooner if lung re-fills, it could happen). Will have more info and another "plan" to move on, and get this damn melanoma out of my life.
Hi y'all,
After 3 months, I'm failing BRAF. Lung refilled and had to be drained this past Monday, terrible arthritis in my right wrist kept me awake Sunday into Monday.
Dr. Peri is coordinating with Dr. Sharfman at Johns Hopkins. They are going to have me change my dose: high a.m., lower p.m. + low dose steroids for the pain in the joints.
I go back on 12/1 (if not sooner if lung re-fills, it could happen). Will have more info and another "plan" to move on, and get this damn melanoma out of my life.
I'm normally upbeat, but just feel totally flattened right now. There are so many who are in so much worse shape (I'm still working full time, and feel pretty good, actually), but today is my pity party.
TracyLee Stage IV
- Replies
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- November 17, 2011 at 5:46 pm
Tracy, I am sorry to hear your news. Hopefully the new dosing regimen will get your lungs and joint pains under control! It definitely sounds like Dr. Peri is on top of your case, which is a very good thing! As for your pity party, enjoy it!! I'm thinking you are not going to be in the middle of it for too long…
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- November 17, 2011 at 5:46 pm
Tracy, I am sorry to hear your news. Hopefully the new dosing regimen will get your lungs and joint pains under control! It definitely sounds like Dr. Peri is on top of your case, which is a very good thing! As for your pity party, enjoy it!! I'm thinking you are not going to be in the middle of it for too long…
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- November 17, 2011 at 5:46 pm
Tracy, I am sorry to hear your news. Hopefully the new dosing regimen will get your lungs and joint pains under control! It definitely sounds like Dr. Peri is on top of your case, which is a very good thing! As for your pity party, enjoy it!! I'm thinking you are not going to be in the middle of it for too long…
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- November 17, 2011 at 9:23 pm
TracyLee,
After the fight you have put up so far, you deserve a pity party for this latest development! However, I think stupid melanoma has just momentarily forgotten who it's dealing with here. I know that between your great doctors and your strong fighting spirit, you will be back in front of it soon! I am sending you light and love from north of the canal.
Lear
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- November 17, 2011 at 9:23 pm
TracyLee,
After the fight you have put up so far, you deserve a pity party for this latest development! However, I think stupid melanoma has just momentarily forgotten who it's dealing with here. I know that between your great doctors and your strong fighting spirit, you will be back in front of it soon! I am sending you light and love from north of the canal.
Lear
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- November 17, 2011 at 9:23 pm
TracyLee,
After the fight you have put up so far, you deserve a pity party for this latest development! However, I think stupid melanoma has just momentarily forgotten who it's dealing with here. I know that between your great doctors and your strong fighting spirit, you will be back in front of it soon! I am sending you light and love from north of the canal.
Lear
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- November 17, 2011 at 9:46 pm
you certainly are allowed a pity party, stinks to be in pain. It sounds like you have good doctors and they have revised your plan of attack!! Keep us posted!!
laurie from maine
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- November 17, 2011 at 9:46 pm
you certainly are allowed a pity party, stinks to be in pain. It sounds like you have good doctors and they have revised your plan of attack!! Keep us posted!!
laurie from maine
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- November 17, 2011 at 9:46 pm
you certainly are allowed a pity party, stinks to be in pain. It sounds like you have good doctors and they have revised your plan of attack!! Keep us posted!!
laurie from maine
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- November 18, 2011 at 1:15 am
TracyLee, I am saddened to read of this setback. However, you are not failing anything
as far I am concerned. BRAF inhibitors are very new drugs, and there is a lot that
researchers need to learn in order to make them fully effective. Therefore, it is the
treatment that is the problem and not you.You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease".
(See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full)Unfortunately, I feel that changing the dose may not work as it looks like melanoma has
found ways to bypass the effects of the BRAF inhibitor that you are on at the moment.
Therefore, I think that it would be wise to look at a different treatment approach such
as IL-2, an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell
therapy).Hope this helps. You remain in my prayers
Frank from Australia
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- November 18, 2011 at 1:15 am
TracyLee, I am saddened to read of this setback. However, you are not failing anything
as far I am concerned. BRAF inhibitors are very new drugs, and there is a lot that
researchers need to learn in order to make them fully effective. Therefore, it is the
treatment that is the problem and not you.You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease".
(See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full)Unfortunately, I feel that changing the dose may not work as it looks like melanoma has
found ways to bypass the effects of the BRAF inhibitor that you are on at the moment.
Therefore, I think that it would be wise to look at a different treatment approach such
as IL-2, an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell
therapy).Hope this helps. You remain in my prayers
Frank from Australia
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- November 20, 2011 at 1:14 pm
Dear TracyLee,
I am so sorry to hear this news! I am thinking of you and hope there is a new plan in place SOON!
Hugs,
Vermont_Donna, stage 3a, NED
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- November 20, 2011 at 1:14 pm
Dear TracyLee,
I am so sorry to hear this news! I am thinking of you and hope there is a new plan in place SOON!
Hugs,
Vermont_Donna, stage 3a, NED
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- November 20, 2011 at 1:14 pm
Dear TracyLee,
I am so sorry to hear this news! I am thinking of you and hope there is a new plan in place SOON!
Hugs,
Vermont_Donna, stage 3a, NED
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- November 21, 2011 at 6:55 pm
Jeez, Tracy…this totally sucks…i am so sorry and concerned for you…here is an idea…ask doc to retest for mutations…and try to find another targeted therapy…we know it works for you…maybe a mek inhibitor, but get retested…i can't remember but i think ipi worked for awhile too? so another option is a trial with blanket therapy like anti pd 1?
bad news tracy, so sorry…hoped it would work long enough to jump on other definite promising drug…
i hate melanoma
boots
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- November 21, 2011 at 6:55 pm
Jeez, Tracy…this totally sucks…i am so sorry and concerned for you…here is an idea…ask doc to retest for mutations…and try to find another targeted therapy…we know it works for you…maybe a mek inhibitor, but get retested…i can't remember but i think ipi worked for awhile too? so another option is a trial with blanket therapy like anti pd 1?
bad news tracy, so sorry…hoped it would work long enough to jump on other definite promising drug…
i hate melanoma
boots
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- November 21, 2011 at 6:55 pm
Jeez, Tracy…this totally sucks…i am so sorry and concerned for you…here is an idea…ask doc to retest for mutations…and try to find another targeted therapy…we know it works for you…maybe a mek inhibitor, but get retested…i can't remember but i think ipi worked for awhile too? so another option is a trial with blanket therapy like anti pd 1?
bad news tracy, so sorry…hoped it would work long enough to jump on other definite promising drug…
i hate melanoma
boots
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- November 22, 2011 at 8:14 pm
still on zelboraf…50 percent reduction in tumors after two months…even on reduced dose…next scans in december…taking a ridiculously low dose which scares me, but i had very severe side effects with it (bedridden)….enough to get booted off for two weeks then restart…feel like i am playing with fire…i do have cyp enzyme mutations so a lot of drugs i take are halved dosages…zelboraf so new, they don't even know correct dosages-especially for cyp people…i was told some people can take a bottle full and not have enough in their blood serum, while other people can take low doses but have high blood serums…if zelboraf fails, i have several options…increase dosage with help of steroids, get on a clinical trial, take yervoy…i would do nothing until i saw jeff weber at moffitt first…but eyeing the braf-mek trial as a very promising treatment after zelboraf…tried to get on this trial last summer but, had difficulty finding one up and running in my area, so went zelboraf because i did not have time on my side.
thanks for asking
boots
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- November 22, 2011 at 8:14 pm
still on zelboraf…50 percent reduction in tumors after two months…even on reduced dose…next scans in december…taking a ridiculously low dose which scares me, but i had very severe side effects with it (bedridden)….enough to get booted off for two weeks then restart…feel like i am playing with fire…i do have cyp enzyme mutations so a lot of drugs i take are halved dosages…zelboraf so new, they don't even know correct dosages-especially for cyp people…i was told some people can take a bottle full and not have enough in their blood serum, while other people can take low doses but have high blood serums…if zelboraf fails, i have several options…increase dosage with help of steroids, get on a clinical trial, take yervoy…i would do nothing until i saw jeff weber at moffitt first…but eyeing the braf-mek trial as a very promising treatment after zelboraf…tried to get on this trial last summer but, had difficulty finding one up and running in my area, so went zelboraf because i did not have time on my side.
thanks for asking
boots
-
- November 22, 2011 at 8:14 pm
still on zelboraf…50 percent reduction in tumors after two months…even on reduced dose…next scans in december…taking a ridiculously low dose which scares me, but i had very severe side effects with it (bedridden)….enough to get booted off for two weeks then restart…feel like i am playing with fire…i do have cyp enzyme mutations so a lot of drugs i take are halved dosages…zelboraf so new, they don't even know correct dosages-especially for cyp people…i was told some people can take a bottle full and not have enough in their blood serum, while other people can take low doses but have high blood serums…if zelboraf fails, i have several options…increase dosage with help of steroids, get on a clinical trial, take yervoy…i would do nothing until i saw jeff weber at moffitt first…but eyeing the braf-mek trial as a very promising treatment after zelboraf…tried to get on this trial last summer but, had difficulty finding one up and running in my area, so went zelboraf because i did not have time on my side.
thanks for asking
boots
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- November 18, 2011 at 1:15 am
TracyLee, I am saddened to read of this setback. However, you are not failing anything
as far I am concerned. BRAF inhibitors are very new drugs, and there is a lot that
researchers need to learn in order to make them fully effective. Therefore, it is the
treatment that is the problem and not you.You may have seen the following abstract: "Vemurafenib (PLX4032) promotes epigenetic
changes in melanoma cells leading to development of more invasive metastatic disease".
(See: http://onlinelibrary.wiley.com/doi/10.1111/j.1755-148X.2011.00909.x/full)Unfortunately, I feel that changing the dose may not work as it looks like melanoma has
found ways to bypass the effects of the BRAF inhibitor that you are on at the moment.
Therefore, I think that it would be wise to look at a different treatment approach such
as IL-2, an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell
therapy).Hope this helps. You remain in my prayers
Frank from Australia
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- November 22, 2011 at 12:44 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn't be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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- November 22, 2011 at 12:44 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn't be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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- November 22, 2011 at 12:44 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn't be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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- November 22, 2011 at 12:45 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn’t be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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- November 22, 2011 at 12:45 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn’t be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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- November 24, 2011 at 11:13 pm
Dear TracyLee,
I'm really sorry to hear your news, and I pray that things will turn around for you.
Sorry I just saw this…I haven't been on line for awhile. I wish I could think of more to so say, but please know that you are in my thoughts all the time. We've got to kick this beast's a**!
xoxo,
karen
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- November 24, 2011 at 11:13 pm
Dear TracyLee,
I'm really sorry to hear your news, and I pray that things will turn around for you.
Sorry I just saw this…I haven't been on line for awhile. I wish I could think of more to so say, but please know that you are in my thoughts all the time. We've got to kick this beast's a**!
xoxo,
karen
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- November 24, 2011 at 11:13 pm
Dear TracyLee,
I'm really sorry to hear your news, and I pray that things will turn around for you.
Sorry I just saw this…I haven't been on line for awhile. I wish I could think of more to so say, but please know that you are in my thoughts all the time. We've got to kick this beast's a**!
xoxo,
karen
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- November 22, 2011 at 12:45 am
Tracy….I was very surprised when I read your above post and saw that you are being followed by Dr. Sharfman! SO AM I!!!!! He saved my life and I owe everything I am to him!!! I swear he is the best and if it weren't for him….I wouldn’t be here today : ( Unfortunately, my story is one of some similarity to yours as I was diagnosed with Stage 4 Melanoma at the young age of 23 single mom of a daugter who was 3 and son 8. My initial site was my right lung and had to have the bottom 2 lobes removed. They never discovered a skin site? Oh well, doesn't matter now huh? LOL
Well, I went into remission for 6 years after I had 1 foot of my small intestine (Oct. 2005) but unfortunately, last Tuesday I was made aare that my cancer had returned throughout my entire chest and about fell over!!!!! I immediately called Dr. Sharfman's office and scheduled a PET/CT scan for tomorrow and an appt. with Dr. Sharfman the following day,Wed., to go over the results of the PET/CT. I kno that I am going to have to undergo some sorta treatment as I am not in favor of the old "watch and wait" method.
Dr. Sharfman utilized Interleuken 2 as my method of killing the cancer initially and said that if anything ever decided to return, he would definately use that method of ridding my body of this horrid stuff!!! I hope that we can keep in touch and good luck to all of your future endeavors!
Sincerely,
PaTinkerbell
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