Change in BRAF mutation finding

I had heard of BRAF status changing (I do not have the mutation but was hoping my status would change to +). I asked my onc recently this question she said it never goes from neg to pos but can go from pos to neg. Maybe your first path report was incorrect? Anyway, glad you now have more treatment options!

Hi Cindy Lou,
I received 48 gray of radiation over 20 fractions to the right side of my face and neck, very similar to your treatment. The side effects started after the first two weeks of treatment. The inside of my mouth and throat developed sores and I begun to feel tired. First ten days were a walk in the park. The next ten were OK, the mouth and throat sores weren’t great. Ibuprofen helps but I did use a dexamethasone rinse twice a day which was really beneficial. After you complete the treatments the radiation continues to work for another ~2 weeks. After that the outside of my face and neck did burn and form blisters. I don’t remember them being painful. I did lose facial and head hair,most of which returned. I’m not sure you wanted to hear this but it’s just the way it is. I was able to eat certain foods like chicken noodle soup. I still have chicken noodle soup for lunch 4-5 times a week.

More importantly, I know you will get through it! I sent an email to my family everyday, counting down percent completion. It helped me cope and the day I sent out the last email was a personal triumph.

Good luck, you’ve got this!
Bill

Hi Cindy, wow! That can explain alot that a certain treatment hasnt been working properly! Now iv “heard” that a once Negative diagnosis of the B-RAF Mutation Gene converting over to a Positive result can happen but its VERY uncommon and i would have to say the new test was done on a newer untested lesion, not a previous Neg/Braf tested lesion, not certain if the very “Same” lesion can flip flop haha…ill have to dig in on this one! Keep us posted!

Apparently BRAF status can change both ways as per the following study in the European Journal of Cancer study. Perhaps this is why melanoma is so difficult to treat since a single tumor/lesion can have both BRAF + and BRAF -‘ ve status.
https://www.sciencedirect.com/science/article/pii/S095980491730967X
Discrepancy in BRAF status among patients with metastatic malignant melanoma: A meta-analysis
Author links open overlay panelAntonisValachisabGustav J.Ullenhagac
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https://doi.org/10.1016/j.ejca.2017.05.015
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Highlights
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This is to our knowledge the largest review article on this subject.

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We demonstrate higher BRAF discrepancies than previously reported.

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The findings have important clinical implications for malignant melanoma.

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The results indicate a need for additional tumour biopsies for BRAF testing.

Abstract
The incidence of malignant melanoma is growing rapidly. Approximately half of the cases are BRAF mutated, making treatment with kinase inhibitors a (MEK and BRAF inhibitors) preferred choice in the advanced setting. The vast majority of these patients will benefit from the treatment. It is therefore of vital importance that the BRAF analysis is reliable and reflects the true nature of the tumour. Intraindividual tumour BRAF heterogeneity may exist, and changes of BRAF status over time might occur.

We reviewed the literature by searching the PubMed database and 630 potentially relevant studies were identified. Thereafter, studies that investigated intralesional heterogeneity only, studies with ≤10 patients and studies that did not include adequate data to calculate discrepancy rates were excluded. Twenty-two studies met our inclusion criteria and were included in the meta-analysis.

The pooled discrepancy rate between primary and metastatic lesions was 13.4% (95% confidence interval [CI]: 9.2–18.2%) while it was 7.3% (95% CI: 3.3–12.6) between two metastatic lesions. The number of patients whose tumoural BRAF status was changed from mutation to wild type and from wild type to mutation, respectively, was comparable.

We conclude that a clinically meaningful discrepancy rate in BRAF status both between primary-metastatic and metastatic–metastatic melanoma lesions exists. Our results support the polyclonal model of melanomas in which subclones with different BRAF status co-exist in the same melanoma lesion. In addition, the results indicate a need for biopsy of a metastatic lesion for subsequent BRAF analysis when treatment with kinase inhibitors is considered.

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Keywords
MelanomaDiscrepancyBRAFMeta-analysis

Hi Cindy Lou – my husband had radiation to his jaw/neck area in July 2012 and experienced severe skin burn (like a sunburn) on his upper shoulder/neck/jaw. Over the next few months, he had worsening mouth pain and ultimately developed a significant mouth sore with exposed jaw bone. That let to a ton of complications – he developed trismus and was unable to open his mouth much more than a centimeter, ultimately ended up with a feeding tube for 9 months. Before the feeding tube was placed, he was struggling to swallow anything and pretty much lived on high protein drinks – his preferred brand was Unjury. The mouth sore still exists but doesn’t give him much trouble at the moment. He did use “magic mouthwash” solution as a mouth rinse that provided a minimal amount of relief. I don’t recall what the radiation dosage was but he did do a higher dose for a shorter period – in hindsight, this was a bad decision. He’s also been on Tafinlar for about the same amount of time and did experience high fevers which led to a dose reduction. He was on 3/4 dose of just Tafinlar since his side effects were worse when taking MEK. Had several hospitalizations due to the fevers and adrenal insufficiency. He added Keytruda in March 2018 and is finally NED. Currently tapering off Tafinlar and may stop taking if his scans next week are still good. His is a “worst case” scenario and I hope you don’t experience any of these issues and that you have great results from the radiation and Taf/MEK. Take care.
Ann

Cindy Lou,
I have been taking Tafinlar/Mekinist for slightly over a year. I have had fevers one time for 2 days. I have gotten vitiligo. My hair is changing color, texture, growth directions and curling! I have acquired a slight rash in the last couple of weeks. I just had a biopsy on a place on my ear but have not heard results yet. Basically I have done very well on these meds. I take 200mg of Tafinlar and 1.5mg of Mekinist. These are slightly lowered doses. I hope you do as well as I have! I wish you well!