Braf + V600E

This topic has 24 replies, 6 voices, and was last updated 14 years, 6 months ago by Harry in Fair Oaks.

Post

- July 16, 2011 at 9:56 pm
- Quote
boot2aboot
Participant
Found out i am Braf + and fishing for treatment/clinical trial ideas…i know vemfenurib (sp) only works so long so i am interested in combo treatments that hit Braf and Mek pathway…i am currently doing chemo 5 days every two weeks CVD…i have 3 liver mets…5 possible lung mets…brain MRi clear…something is going on with my kidney which is enlarged…i am having a stent put in tuesday…i did mail my paperwork to Dr Rosenberg for possible TIL study…but of course have to wait for chemo course first and wash-out.

Found out i am Braf + and fishing for treatment/clinical trial ideas…i know vemfenurib (sp) only works so long so i am interested in combo treatments that hit Braf and Mek pathway…i am currently doing chemo 5 days every two weeks CVD…i have 3 liver mets…5 possible lung mets…brain MRi clear…something is going on with my kidney which is enlarged…i am having a stent put in tuesday…i did mail my paperwork to Dr Rosenberg for possible TIL study…but of course have to wait for chemo course first and wash-out.

i am particularly interested in hearing from MichaelFL, King and Jimmy B

thanks

boots

Viewing 5 reply threads

Replies

- - July 17, 2011 at 12:25 am
  - Quote
  MichaelFL
  Participant
  I typed in BRAF and MEK and this is what I came up with:
  
  http://clinicaltrials.gov/ct2/results?term=braf+mek+melanoma&recr=Open&no_unk=Y
  
  You can read through them and see based on inclusion/exclusion criteria what may be of interest to you.
  
  You are correct, PLX4032 (vemurafenib) only works for a time, and the melanoma finds another pathway, so it is good you are being proactive in your research.
  
  TIL is also a good choice, but it takes time to grow the cells in the lab. Tumor Infiltrating Lymphocytes (TIL) will be obtained from a piece of tumor tissue after surgery, or the patients blood, depending on the trial. They will be grown in larger number in a laboratory for a few months.
  
  Do you know yet which TIL trial are you being considered for, as there are 6 of them at NCI?
  
  http://clinicaltrials.gov/ct2/results?term=til+melanoma+nih&recr=Open&no_unk=Y
  
  I am not sure what other assistance I can render at this point as these are all very personal decisions. Truthfully, it is a crap shoot. One tries to find what works for them.
  
  Best wishes, and good luck.
  
  Michael
  - July 17, 2011 at 1:06 am
    
    Quote
    shellebrownies
    Participant
    
    Boots,
    
    Double check with your oncologist on the BRAF/MEK trial or call the contact number to find out where (if any) that trial is still available.
    
    Once we found out that Don had improved, Dr. L said that this particular trial had closed. However, it's possible it has only closed in Boston?
    
    Glad to hear you have the mutation so that it gives you more options.
    
    Wondering if there is any way to sign up for the TIL trial AND a BRAF trial? You know, do the BRAF while you are waiting for them to grow the TIL?
    
    Michelle, wife of Don
  - July 17, 2011 at 1:06 am
    
    Quote
    shellebrownies
    Participant
    
    Boots,
    
    Double check with your oncologist on the BRAF/MEK trial or call the contact number to find out where (if any) that trial is still available.
    
    Once we found out that Don had improved, Dr. L said that this particular trial had closed. However, it's possible it has only closed in Boston?
    
    Glad to hear you have the mutation so that it gives you more options.
    
    Wondering if there is any way to sign up for the TIL trial AND a BRAF trial? You know, do the BRAF while you are waiting for them to grow the TIL?
    
    Michelle, wife of Don
- - July 17, 2011 at 12:25 am
  - Quote
  MichaelFL
  Participant
  I typed in BRAF and MEK and this is what I came up with:
  
  http://clinicaltrials.gov/ct2/results?term=braf+mek+melanoma&recr=Open&no_unk=Y
  
  You can read through them and see based on inclusion/exclusion criteria what may be of interest to you.
  
  You are correct, PLX4032 (vemurafenib) only works for a time, and the melanoma finds another pathway, so it is good you are being proactive in your research.
  
  TIL is also a good choice, but it takes time to grow the cells in the lab. Tumor Infiltrating Lymphocytes (TIL) will be obtained from a piece of tumor tissue after surgery, or the patients blood, depending on the trial. They will be grown in larger number in a laboratory for a few months.
  
  Do you know yet which TIL trial are you being considered for, as there are 6 of them at NCI?
  
  http://clinicaltrials.gov/ct2/results?term=til+melanoma+nih&recr=Open&no_unk=Y
  
  I am not sure what other assistance I can render at this point as these are all very personal decisions. Truthfully, it is a crap shoot. One tries to find what works for them.
  
  Best wishes, and good luck.
  
  Michael
- - July 17, 2011 at 6:24 am
  - Quote
  Harry in Fair Oaks
  Participant
  I'm currently doing the GSK BRAF/MEK trial at the Angeles Clinic. I think they are still recruiting. Give them a call at 310-582-7900.
  
  My 8-week scans showed marked improvement, with tumors either smaller or not even visualized anymore. The trial has 3 different arms you can get randomized into: 2 are BRAF/MEK combos with different MEK dosages, and one arm has BRAF only. I "lucked out" into the arm with the highest MEK dose.
  
  Best wishes,
  
  Harry
  - July 17, 2011 at 4:27 pm
    
    Quote
    boot2aboot
    Participant
    
    excellent Harry, thanks for the study info…and update…could i ask where your tumors, tumor load, sizes were? and how long this miracle took?
    
    boots…
  - July 17, 2011 at 4:27 pm
    
    Quote
    boot2aboot
    Participant
    
    excellent Harry, thanks for the study info…and update…could i ask where your tumors, tumor load, sizes were? and how long this miracle took?
    
    boots…
  - July 17, 2011 at 5:52 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Going into the study, my scans at the beginning of May showed bone mets (clavicle,femur, sacrum, and hip), sub-Qs in cheek and back, and a couple of 5-7 mm nodules in lung.
    
    In scans of 10 days ago, the sub-Qs, the sacrum met, and the lung nodules were not seen, the femur mets were smaller, and the clavicle and hip mets were reported as stable.
    
    If I can figure it out, I'll write up my profile. I'm a long-time survivor: 1st diagnosed 1995, Stage III in 1997, Stage IV in 2000. This is my 3rd clinical trial over these years….
    
    Best wishes,
    
    Harry
  - July 17, 2011 at 5:52 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Going into the study, my scans at the beginning of May showed bone mets (clavicle,femur, sacrum, and hip), sub-Qs in cheek and back, and a couple of 5-7 mm nodules in lung.
    
    In scans of 10 days ago, the sub-Qs, the sacrum met, and the lung nodules were not seen, the femur mets were smaller, and the clavicle and hip mets were reported as stable.
    
    If I can figure it out, I'll write up my profile. I'm a long-time survivor: 1st diagnosed 1995, Stage III in 1997, Stage IV in 2000. This is my 3rd clinical trial over these years….
    
    Best wishes,
    
    Harry
  - July 17, 2011 at 5:53 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Going into the study, my scans at the beginning of May showed bone mets (clavicle,femur, sacrum, and hip), sub-Qs in cheek and back, and a couple of 5-7 mm nodules in lung.
    
    In scans of 10 days ago, the sub-Qs, the sacrum met, and the lung nodules were not seen, the femur mets were smaller, and the clavicle and hip mets were reported as stable.
    
    If I can figure it out, I'll write up my profile. I'm a long-time survivor: 1st diagnosed 1995, Stage III in 1997, Stage IV in 2000. This is my 3rd clinical trial over these years….
    
    Best wishes,
    
    Harry
  - July 17, 2011 at 5:53 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    Going into the study, my scans at the beginning of May showed bone mets (clavicle,femur, sacrum, and hip), sub-Qs in cheek and back, and a couple of 5-7 mm nodules in lung.
    
    In scans of 10 days ago, the sub-Qs, the sacrum met, and the lung nodules were not seen, the femur mets were smaller, and the clavicle and hip mets were reported as stable.
    
    If I can figure it out, I'll write up my profile. I'm a long-time survivor: 1st diagnosed 1995, Stage III in 1997, Stage IV in 2000. This is my 3rd clinical trial over these years….
    
    Best wishes,
    
    Harry
  - July 17, 2011 at 7:06 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    PS – I did my profile.
  - July 17, 2011 at 7:06 pm
    
    Quote
    Harry in Fair Oaks
    Participant
    
    PS – I did my profile.
  - July 19, 2011 at 9:52 pm
    
    Quote
    killmel
    Participant
    
    Hi Harry,
    
    Thankd so much for posting. If I recall correctly, you are being treated at angeles clinic.
    
    Do you know if this BRAF/MEK combo trial is sill open & taking patients?? If you do not know if this trial is still open to patients, could ask for me.
    
    I took your advice & called angeles clininc & inquired about BRAF/MEK combo trial to see if they were still recruiting. They told me I needed to make appt. I just do not understand why someone could not just tell me if there were any openings left in this trial & still recruiting.
    
    Thanks for the info about opening in the Braf/MEK combo trial. Also, how are your side effects on this trial.
    
    Hope you continue to do well on the trial. I will look forward to hearif Angeles clinic is still recruiting for this trial.
    
    Mary
  - July 19, 2011 at 9:52 pm
    
    Quote
    killmel
    Participant
    
    Hi Harry,
    
    Thankd so much for posting. If I recall correctly, you are being treated at angeles clinic.
    
    Do you know if this BRAF/MEK combo trial is sill open & taking patients?? If you do not know if this trial is still open to patients, could ask for me.
    
    I took your advice & called angeles clininc & inquired about BRAF/MEK combo trial to see if they were still recruiting. They told me I needed to make appt. I just do not understand why someone could not just tell me if there were any openings left in this trial & still recruiting.
    
    Thanks for the info about opening in the Braf/MEK combo trial. Also, how are your side effects on this trial.
    
    Hope you continue to do well on the trial. I will look forward to hearif Angeles clinic is still recruiting for this trial.
    
    Mary
  - July 20, 2011 at 12:09 am
    
    Quote
    Harry in Fair Oaks
    Participant
    
    My guess is that it is open. It sounds to me like they are reticent to have the staff answering the phones discuss what may or may not be available to a caller. Probably want you to schedule a consult with a Dr. to discuss your options – of course that would entail a substantial fee ($500 in my case) as well as travel costs.
    
    I am on the trial not because I went "shopping" for it – I scheduled a consult with Dr. O'Day for a 2nd opinion after my HMO Dr. recommended IL2. We discussed a couple of options, and after I tested BRAF+ , that's what Dr. O'Day recommended.
    
    I will drop a note to my protocol nurse. Maybe she can say. In case she does, it will help if you give me your email address.
    
    Best wishes,
    
    Harry
  - July 20, 2011 at 12:09 am
    
    Quote
    Harry in Fair Oaks
    Participant
    
    My guess is that it is open. It sounds to me like they are reticent to have the staff answering the phones discuss what may or may not be available to a caller. Probably want you to schedule a consult with a Dr. to discuss your options – of course that would entail a substantial fee ($500 in my case) as well as travel costs.
    
    I am on the trial not because I went "shopping" for it – I scheduled a consult with Dr. O'Day for a 2nd opinion after my HMO Dr. recommended IL2. We discussed a couple of options, and after I tested BRAF+ , that's what Dr. O'Day recommended.
    
    I will drop a note to my protocol nurse. Maybe she can say. In case she does, it will help if you give me your email address.
    
    Best wishes,
    
    Harry
- - July 17, 2011 at 6:24 am
  - Quote
  Harry in Fair Oaks
  Participant
  I'm currently doing the GSK BRAF/MEK trial at the Angeles Clinic. I think they are still recruiting. Give them a call at 310-582-7900.
  
  My 8-week scans showed marked improvement, with tumors either smaller or not even visualized anymore. The trial has 3 different arms you can get randomized into: 2 are BRAF/MEK combos with different MEK dosages, and one arm has BRAF only. I "lucked out" into the arm with the highest MEK dose.
  
  Best wishes,
  
  Harry
- - July 17, 2011 at 7:11 pm
  - Quote
  King
  Participant
  Hi Boots,
  
  I'm responding since you mentioned you'd be interested in hearing from me. Unfortunately, I don't have much to offer. Thankfully, I have been NED since 2008. At that time, the treatment options/clinical trials were very limited so I didn't have the choices that you have today. Luckily, some very extensive surgeries helped me a couple of times. The only "drugs" I've done are 12 months of Interferon and 12 months of GM-CSF/Leukine when it was in a Phase II trial.
  
  That's great that you are BRAF positive. It will certainly give you more options if you need them. Wishing you the best on the CVD. You are doing your homework which is wonderful. One day at a time.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
- - July 17, 2011 at 7:11 pm
  - Quote
  King
  Participant
  Hi Boots,
  
  I'm responding since you mentioned you'd be interested in hearing from me. Unfortunately, I don't have much to offer. Thankfully, I have been NED since 2008. At that time, the treatment options/clinical trials were very limited so I didn't have the choices that you have today. Luckily, some very extensive surgeries helped me a couple of times. The only "drugs" I've done are 12 months of Interferon and 12 months of GM-CSF/Leukine when it was in a Phase II trial.
  
  That's great that you are BRAF positive. It will certainly give you more options if you need them. Wishing you the best on the CVD. You are doing your homework which is wonderful. One day at a time.
  
  Stay Strong
  King
  
  Stage IV 7/05 Liver mets
  - July 18, 2011 at 10:37 pm
    
    Quote
    boot2aboot
    Participant
    
    i wanted to let everyone know i scheduled a meeting with Jeff Weber at Moffitt, August 17th to be considered for the Braf/Mek trial
    
    boots
  - July 18, 2011 at 10:37 pm
    
    Quote
    boot2aboot
    Participant
    
    i wanted to let everyone know i scheduled a meeting with Jeff Weber at Moffitt, August 17th to be considered for the Braf/Mek trial
    
    boots
  - July 19, 2011 at 8:02 pm
    
    Quote
    King
    Participant
    
    Boots,
    
    That's great. Dr. Weber is my medical oncologist. I'll be at Moffitt on 8/12 (pain management clinic). Do you plan only to be in Tampa for the day?
    
    Stay Strong
    
    King
    
    Stage IV 7/05 Liver mets
  - July 19, 2011 at 8:02 pm
    
    Quote
    King
    Participant
    
    Boots,
    
    That's great. Dr. Weber is my medical oncologist. I'll be at Moffitt on 8/12 (pain management clinic). Do you plan only to be in Tampa for the day?
    
    Stay Strong
    
    King
    
    Stage IV 7/05 Liver mets