Low braf count

This topic has 13 replies, 7 voices, and was last updated 5 years, 10 months ago by Wicked Witch.

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- March 3, 2019 at 7:56 pm
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Gkheadhunter
Participant
Hi all. My name is Karen. I am 49 years old and was diagnosed with stage 4 metastatic melanoma in April 2018. It started with a lump on my side which was removed. I had radiation and thought all was well until June when a PET scan showed it had spread throughout my body. I began taking Tafinlar at that time and started immunotherapy. First with the drug Opdivo and then switched to Keytruda. In December I had to have a grapefruit sized tumor removed from my ovary. It was determined that the braf mutation is the driver behind my cancer. Unfortunately my levels are so low that now my oncologist has taken me off of immunotherapy because he says it will not help. My prognosis is now 1 year. Is there anyone else out there with the braf?

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- - March 3, 2019 at 8:38 pm
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  BillB
  Participant
  I would highly recommend you contact Memorial Sloan Kettering In NYC and get a second opinion.
  
  Bill
  - March 4, 2019 at 12:24 am
    
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    Gkheadhunter
    Participant
    
    Actually that is where my tumor was sent. Sloan Kettering did testing for over 400different types of mutations. I had about 25 but the driver is the braf.
  - March 4, 2019 at 1:17 am
    
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    BillB
    Participant
    
    Sorry, didn’t have time earlier. MSK Isn’t that far from you and is an excellent cancer center with some very well known melanoma specialists. Your facility sent the samples to MSK for a reason. Celeste has also provided you with some additional excellent locations nearby. I’m have been personally treated at MSK and I drive 4.5 hours each way to get there. I have been extremely happy with my care in all respects, especially the surgeons, radiologists,pathologists, lab and imaging. They have gone above and beyond to provide me with first class care and have been extremely flexible with scheduling regarding my travel. Just go see a melanoma specialist ASAP!
    
    Bill
  - March 4, 2019 at 1:30 am
    
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    Gkheadhunter
    Participant
    
    Thanks Bill. I’m working on it. I believe Dr Nair at Lehigh Valley Hospital is a melanoma specialist and he is who I am seeing. I am just interested in a second opinion.
- - March 3, 2019 at 8:45 pm
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  Gene_S
  Participant
  Are you seeing a melanoma specialist? If not I would get to one quickly. I am braf positive but I have only heard of being braf + or braf- but never as being to low.
  - March 4, 2019 at 12:25 am
    
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    Gkheadhunter
    Participant
    
    Thanks for your feedback. I a going to look for a melanoma specialist and get a second opinion.
- - March 3, 2019 at 10:31 pm
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  Lucygoose
  Participant
  I agree. Get a second opinion. Memorial Sloan Kettering (NYC), MD Anderson (Houston TX) are tops on the list. I’d put the melanoma working group at Emory Winship Cancer Center in Atlanta high up on the list too.
- - March 3, 2019 at 11:57 pm
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  Bubbles
  Participant
  I agree with others that you need to seek the care of a melanoma specialist. If you give the geographic area in which you live, we can better advise you as to the location of such care nearest you. There are many places throughout the country where you can attain top notch melanoma treatment. Additionally, there are those who are maintained on targeted therapy (a BRAF inhibitor combined with a MEK inhibitor) for many years. (Look at the posts by Richard K here.) Furthermore, there are many immunotherapy options….not just one….not to mention melanoma treatments in trials. There is hope! Too many of us are still here despite serious odds. Ask more questions as you have the need. I wish you my best. Celeste
  - March 4, 2019 at 12:27 am
    
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    Gkheadhunter
    Participant
    
    Thank you for your feedback. I am going to look for a melanoma specialist in my area for a second opinion. I live near Allentown PA
  - March 4, 2019 at 12:52 am
    
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    Bubbles
    Participant
    
    There is this previous thread regarding Melanoma Specialists in the Philadelphia area:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/philadelphia-hospitals
    
    Clearly there are many options in New York:
    
    At the Perlmutter Cancer Center at NYU – https://nyulangone.org/conditions/melanoma with Pavlick, Weber and others
    
    At Memorial Sloan Kettering:  https://www.mskcc.org/cancer-care/types/melanoma/melanoma-experts with Chapman, Postow, Wolchok and others
    
    At Columbia:  http://columbiasurgery.org/melanoma/our-team
    
    There's Yale in CT:  https://www.yalecancercenter.org/patient/people/mario_sznol.profile
    
    There are many, many more…but this should be a start for contacts. Hope this helps. Celeste
  - March 4, 2019 at 1:28 am
    
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    Gkheadhunter
    Participant
    
    Thank you
- - March 3, 2019 at 11:57 pm
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  Edwin
  Participant
  Are you being taken off immunotherapy due to immunotherapy side effects or due to blood test results? Perhaps you could try Yervoy + Opdivo immunotherapy or Yervoy + Keytruda immunotherapy. My stage 4 melanoma got much worse, while I received Kerberos immunotherapy. Switching to Yervoy + Opdivo immunotherapy put my melanoma into remission.
- - March 4, 2019 at 7:43 pm
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  Wicked Witch
  Participant
  Also you are only 4 hours away via the turnpike from UPMC Hillman Cancer Center in Pittsburgh.
  
  GET A SECOND OPINION.