Home Forums Melanoma Diagnosis: Stage IV From Braf neg to pos

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  • #20803
    msue5
    Participant

    As I had posted last week my metastatic node tested pos for Braf(V600e?) After a neg Braf on my original tumor. I was wondering how common this is and also wondered if it is routine to repeat the test. Are there people out there that only had the original tumor tested and they really are pos with metastisis testing? And do I assume the first test was false neg or can something change when the cancer metastisizes? Catherine maybe someone on the scientific board might answer these guestions. Hope everyone had a great holiday. We celebrated at my husbands brothers. There were 45 people-5 siblings and spouses and grandchildren and great grandchildren. Sadly my father in law passed away in Dec so this was the first Thanksgiving without him and he always loved these huge get togethers with all his descendants.

    Mary Sue

    #57804
    Catherine Poole
    Keymaster

    I will definitely look into this. Was it the same lab? Sounds like a great Thanksgiving. :)

    #57805
    msue5
    Participant

    It was a different lab. Thoracic surgeries were done at a different hospital than all the other surgeries.

    Mary Sue

    #57806
    Catherine Poole
    Keymaster

    That most likely explains it, can you tell me the two hospitals and which was neg and which was positive?

    #57807
    msue5
    Participant

    I don’t know if they were sent out but my Oncologist has copies of both reports and I can get copies to see which labs were used. Now I’m skeptical but I won’t be using Zelboraf at this time because I need to save that as my last resort. Would they retest again? Is there opinion involved like there is with original biopsy or is it either present or not? The Onc at Wash Hosp Center says he has had 2 cases like this since they started testing for Braf so I’m assuming it doesn’t happen very often.

    Mary Sue

    #57808
    Keith Flaherty
    Participant

    If BRAF positive, there is no reason to doubt it. There are certainly instances like the one you describe where pushing for another test can pay off. Seems most likely that the first test was wrong, rather than the tumors being different.

    Keith T. Flaherty, M.D.

    Director, Henri and Belinda Termeer Center for Targeted Therapies MGH Cancer Center

    #57809
    msue5
    Participant

    Thank you Dr. Flaherty for responding. I was thrilled to hear I was Braf pos because I also have lupus and thought all I had to choose from was immunotherapies. I have gotten conflicting opinions about whether I could use them safely. I will now be eligible for some clinical trials if I need them in the future.

    Mary Sue

    #57810
    msue5
    Participant

    Had a CT of chest today at Georgetown today to see if anything has progressed since 2 metastatic nodes removed from thoracic area on Oct 23. This scan will determine what type of radiation I receive.If there hasn’t been any progression they will most likely do SBRT for 5 consecutive days. If there is progression I will have radiation to mediastinal area for 4 weeks and possibly Yervoy. If anyone has had the SBRT I would like to hear about side effects and when they occurred. I have 2 appts – 1 with local cancer center in case I would do the more generalized radiation(Thurs) and the other at Georgetown on Fri where they do the SBRT. I am so ready to start something. Living in limbo land has really been difficult. Knowing that some melanoma was unresectable and left behind is making me crazy. I will post when I know more.

    Mary Sue

    #57811
    Catherine Poole
    Keymaster

    So if you are BRAF positive, are they considering Zelboraf?

    #57812
    msue5
    Participant

    Hi Catherine

    Unless the CT shows progression from the small amount of mets left from surgery I will only be doing radiation. I don’t think they are anticipating finding a large amt of disease so only radiation at this time. The 1st drug I would try anyway would be Ipi. Save Braf for later.

    Mary Sue

    #57813
    msue5
    Participant

    The CT Scan I had on Mon showed a enlarged node in the same area that was resected on Oct 24. The Onc said it was hard to tell if it was a new node or one that was only partially resected during the surgery. The surgeon was unable to complete the resection due to bleeding and the fact that the area with the mets was right beside my aorta. He thinks the SBRT is still the way to go. The only question is whether I should follow this with systemic therapy. Also I read somewhere that there is a more sensitive Braf test that are showing pos Braf after being tested neg. I can’t remember where I read this but I would urge anyone facing Stage 4 therapy to be retested if they were previously neg. If I can remember where I read this I will post it. The Med Onc also said it would have been great if the surgeon had left clips around the surgical resection site then we would know if this was a new node that has grown during the 6 wks since surgery which means I would definitely need to start systemic therapy after the radiation. So many decisions and opinions to think about. On a better subject grandbaby # 7 due any day now! I am so excited! Tomorrow consult with local Rad Onc and Fri consult with Georgetown University Rad Onc.

    #57814
    msue5
    Participant

    Had my 2 radiation consults and will have Cyberknife in the next few weeks.

    The enlarged node on Ct was a newly enlarged node since surgery 6 weeks ago not a partially resected node as thought. So the question is should I follow up with systemic treatment since its clearly on the move. I still am getting conflicting opinions about Yervoy and lupus. There is even some concern about radiation and lupus(skin reaction) but I’m taking my chances.

    Mary Sue

    #57815
    Catherine Poole
    Keymaster

    You are BRAF positive?? Ask about Zelboraf or other BRAF drugs. Immunotherapy might not be a good think if you have this preexisting condition of lupus.

    #57816
    msue5
    Participant

    That’s my problem. I have gotten 3 yes and 2 no’s about using immunotherapy. The 1 I really trust is my Rheumatologist. He knows how Lupus behaves which is very different when you are diagnosed when you are older. It usually just manifests itself in the joints and skin and rarely involves the organs. He said if I choose Yervoy we would just monitor my kidney function and that he feels like its worth a try. I want to save Braf for a later more serious event. So far my melanoma has only shown up in my lymph nodes and I also don’t want to ruin my chances at a Braf trial perhaps in combination with something else. I am at the point where I think I have to do something systemic after the cyberknife since there was a new enlarged lymph node in the 6 weeks since my last thoracic surgery. I really was impressed with the Radiation Oncologist at Georgetown’s Lombardi Cancer Center. He has done Cyberknife since it first came out and is very experienced and also with a great personality. He spent over an hour explaining everything and answered all my many questions.

    Mary Sue

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