› Forums › General Melanoma Community › Which treatment option?
- This topic has 10 replies, 6 voices, and was last updated 4 years, 5 months ago by
caitkastrati.
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- November 16, 2019 at 11:09 am
My husband was diagnosed with melanoma stage 3 at the end of September. He found a small lump in his armpit while getting a shower. Once removed they determined it was melanoma. He doesn’t have a primary site. This diagnosis really creeped up on us. It has been a very emotional few months! We just welcomed our baby girl in the world and are hoping/praying that he will cancer free to see her grow up!!Full lymph dissection under left arm. 2/14 lymph node came back positive for melanoma. No known primary. BRAF results were positive. Starting treatment in 2 weeks.
My big question is what treatment options is better when BRAF positive? The oncologist discussed two options immunotherapy once a month for a year OR take a pill (forget the name) if BRAF positive. She said he can do one or the other. When weighing the options she said that he can do immunotherapy if he is BRAF positive or negative. The pill is only if you have BRAF.
Does anyone have experience with these treatment options? Which one works better with BRAF?
Thank you in advance for your help!
Caitlin
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- November 16, 2019 at 3:05 pm
Hi Caitlin,Sorry you and your husband are facing this. Melanoma and its treatments are hard, but there is hope. I remain NED for melanoma after having been diagnosed Stage 3b in 2003, Stage IV with brain and lung mets in 2010!!! Educating yourself regarding the treatment options and the crazy language of melanoma is essential – so you are off to the right start by asking questions! Here is a primer I put together regarding melanoma treatment options and there is a link to a glossary of “terms” at the end that you may find helpful: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
Here is some additional info re BRAF status (it is a bit old…but still stands, though there are many different BRAF/MEK medications available today): https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
As far as choosing the best therapy – the links above explain much of that. Still, most of the time, targeted therapy (a BRAF/MEK combo) is typically used first when there is a very high tumor burden because they work so rapidly, while immunotherapy is used when tumor burden is lower as the response to them is often slower but has proven more durable. However, there are good results from using targeted therapy even as an adjuvant (preventative) in patients who have had all evidence of melanoma removed either by surgery or radiation. But, here is a post I recently put together with recent data on that very topic: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melanoma-patients-want-to-know-what-do.html
Hope this helps. Ask more questions as you have the need. There are many caring and wise melanoma peeps here. I wish you and your husband my best. Celeste
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- November 16, 2019 at 3:20 pm
Reading your post more carefully, I realize that it seems your husband is still Stage 3 (I at first assumed the node was an additional finding and he had become a Stage IV patient) so, if I am understanding correctly he will be attaining adjuvant care that I mentioned briefly above – care to prevent the further development of melanoma after the melanoma you had has been removed. So…..also as I also mentioned above, both targeted therapy and immunotherapy have been used successfully as adjuvant. You are right, which to choose can be hard….though it is a lucky scenario as only about half of melanoma patients are BRAF positive – ie the only patientsfor whom targeted therapy will work!So here are some additional reports on adjuvant care: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=adjuvant
Hope this is more clear. Yours, celeste
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- November 19, 2019 at 1:45 pm
Thank you, Celeste! This is very helpful!I am trying to make sense of all the new language. After reading through all this helpful info, is it fair to say that it is common for low tumor burden patients to get immunotherapy and high tumor burden patients take the BRAF pill?
Also, do you know of any information about unknown primary? It seems rare. It was a huge surprise to us that the swollen lymph node was melanoma because my husband gets skins checks any all all they all came back clear.
Thank you for your help during this tough time.
Caitlin
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- November 19, 2019 at 1:46 pm
Gets skins checks annually and they all came back clear.**
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- November 16, 2019 at 8:17 pm
Sorry for what you and your husband are going through, especially at such a young age. My advice is to consider your doctor’s recommendations and follow his/her treatment plan. You will get a lot of advice on this Board from well- meaning cancer patients, but they all have different diagnoses, goals, medical histories and experiences. Rely on your medical professionals. You can’t predict your treatment success by the reports of a few patients.
The common theme that I believe applies to all of us is Be PATIENT and BE STRONG. Don’t be afraid to get a second opinion on treatment plans. Your medical health insurer will likely pay for it. Best of luck.-
- November 19, 2019 at 1:58 pm
Thank you for these great words of wisdom! I need to hear this!
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- November 17, 2019 at 12:01 am
Caitlin,Sorry your family is going through this. As Celeste mentioned you are off of a great start by finding this board. Although giving medical advice is against the rules of the board the sharing of information about treatments and experiences is what this board is all about. I was diagnosed stage III in 2011 and stage IV in 2013 and I’m still here in large part because of this board and it’s amazing members. If you look at some of the links Celeste provided you will see the information is not about a few patients experiences but it contains summaries of hundreds of trials consisting of 1000’s of patients. This board is great for getting info and then asking your medical team about the different things you learn here. I would also encourage you to get 2nd and even 3rd opinions even if you love your current team of caregivers.
Best of luck to you and your husband,
Brian-
- November 19, 2019 at 1:49 pm
Thank you, Brian! This is very helpful and encouraging!We are going to stay strong and fight this together!
So grateful I stumbled on this welcoming community during this difficult time in our life!
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- November 17, 2019 at 11:24 pm
I’m interested in this too. After I was classified stage 4 and the BRAF came back as positive, my then-oncologist said that he has thinking about BRAF targeted therapy as the next step in my treatment. I decided to move to the University of Minnesota for a variety of reasons, primarily that I’d heard good things about a onc/mel-specialist there. He was of the opinion that combo made the most sense for the next step, given that I had a very low tumor burden. Not saying that the other guy (who I think is a bright guy) was wrong, but this was closer to my understanding of what should come next. Maybe if I’d questioned the first onc, he would have had good justification for his approach. Don’t think there are many certainties in this area.
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