Metastatic melanoma dx. recently 3×4 cm. primary tumor with 2 lymphs

Hi Friend,

Welcome. I’m glad you found us. I trust you will find this group an encouraging source of information. It will make it easier for us to follow your story (and reply) if you go ahead and give yourself a name. It can be anything so it can be anonymous. When you post as Anonymous we don’t know which Anonymous you are.

The best way to know if you’re getting the right treatment is 1) to be knowledgable yourself and 2) work with an oncologist that sees a lot of melanoma (a melanoma specialist). The melanoma treatment world has changed dramatically in the past few years, and general oncologists usually don’t have the time to keep up with more specialized treatment. If you have don’t have a melanoma specialist, and don’t knnow of one, make another post stating your location and that you’re looking for a mel specialist.

To educate yourself on mel treatments is a bit of a challenge and the internet is full of junk treatments. When I was just starting out I read things related to my stage. I’m assuming you haven’t yet had surgery, but with a 3×4 cm tumor, you will be at least stage 2. Your doctor will probably want to do a Sentinel Lymph Node Biopsy (SNLB). This checks the nearest lymph nodes to see if there is cancer in them. If so, you move to stage 3. I would start out by reading the Melanom Primer put together by Celeste (aka “Bubbles”). You can find it here:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html.

If you have further questions, don’t hessitate to ask.

Wishing you peace,
Julie

I was in your shoes a year ago Oct. I also had metastasis to the liver and thoracic lymphnodes, in addition to the lung tumors and nodules. Basically, do a lot of research and reading but the key is to have a melanoma oncologist. I was diagnosed by a general oncologist since my physician believed that I had breast cancer. Once, my liver biopsy confirmed I had melanoma things went very quickly and within 5 days I was seen by a melanoma specialist and treatment was available immediately. Basically Keytruda, Opdivo or Yervoy/Opdivo combo. Target therapy works if you are BRAF+ and is usually used as a second stage therapy. There are trials as well if you like that idea. How will you know which is the correct therapy? Well, honestly you don’t because no melanoma specialist knows which therapy will work for anyone until they try it and see what results you get. Any immunotherapy may work for some and it doesn’t work for others and drs have no idea why this is the case. So you need to inform yourself and together with your melanoma oncologist decide what is best for you. You need to believe in your decision and be comfortable with it. Having said all this, believe in miracles since there are many success stories. My own tumors have reduced in size enormously and although I had a severe reaction which set me back, if I had to do it over again, I would choose the same option without a doubt. Positive frame of mind always helps.
Best of luck in finding the best treatment for you and wishing you successful outcome.
Melanie

Hi there, Bill. (I presume that is who wrote the initial anon note? Either way…)

I hope that you find the “primer” Julie linked helpful. It is hard to know what the best decision is for our care. As she noted, a melanoma specialist – at least an onc very familiar with melanoma and its treatments – is essential. So is educating yourself about your option – which you are actively doing!! So good job you!!! In addition, I put this together regarding choosing immunotherapy vs targeted therapy: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/09/melanoma-patients-want-to-know-what-do.html Obviously, targeted therapy is not an option/effective for those who are not BRAF positive (so getting your tumor tested for that ASAP is essential – and pretty much routine these days – but make sure you check that it is being done). There are many links within. There is no absolute definitive answer to the conundrum, but you may find it helpful. Hang in there. This is a very supportive and knowledgeable crew. Ask more questions as you have the need. I wish you my best! Celeste