Advise please!!!!!

[ScaredMom5]

My son was just diagnosed with extensive metastatic cancer. They think the melanoma returned and it has now spread to his lungs, liver and adrenal gland that we know of so far. He is only 31 and we are so terrified. What do we do now?

[Vflowers]

The first thing to do is not panic. Have they confirmed it's spread by a CT or pet scan?

[ScaredMom5 in reply to Vflowers]

Yes with 2 CT scans. Waiting for Pet, biopsy and brain scan. The doctor has already advised that life expectancy is very grim. Cancer has spread throughout entire body that they have seen so far. They are taking so long to get us the answers we need to start treatments and the cancer center won't even schedule an appointment until after the biopsy.

[Vflowers in reply to ScaredMom5]

From what we went thru with our son, I can relay this to you. My son (Nick) was 23 and in 2015 his PET scan showed 19 tumors in his liver, several scattered in his lung, ribcage, pelvis and right femur. He was initially diagnosed with Melanoma at age 20. They sent his original tumor to be tested so they would know how to treat what had metastasized. That took 3 very long emotional weeks. Turns out he was BRAF positive. So treatment was a little limited. He was given oral immunotherapy drugs. Melanoma of any type doesn't respond to traditional chemotherapy.

[Hidden in reply to Vflowers]

My daughter is getting the Taf/Mek combo and having a hard time. Her tumors are shrinking which gives me hope but the nausea and vomiting are out of control!

[Crycleo]

What kind of therapy has he had so far?

[ScaredMom5 in reply to Crycleo]

None. They are taking forever just to get us a complete diagnosis

[Crycleo in reply to ScaredMom5]

Yes, but there are many more treatment options now than there was just a few years ago. Different types require different treatments, so try to be patient. It’s important to know which type you are dealing with before treatments begin

[Saumann]

Sending you much love💜💕💕💕💕

[ScaredMom5 in reply to Saumann]

Thank you so much. I just need answers faster

[HSsweetheart]

yes, it feels like forever. My husband is very proactive in calling to confirm & make appointments and bugging the docs for results. He's considered a pain in the butt by most but he figures he has nothing to lose and he really doesn't care what people think of him. If a patient advocate is available at the hospital, rattle their cage. You are your son's patient advocate. I'm afraid the squeaky wheel get the attention.

[missyrand Ambassador]

ScaredMom5,

I hear your terror and anxiety at how slowly the treatment wheels are moving.

I hope that you are working with a melanoma specialist.

One thing to consider while you are waiting on test results is to access a palliative care specialist in your area who can talk your son and the family through what he wants done, what he doesn't want done, and under what conditions he wants invasive or life prolonging actions taken. These are tough discussions, and having a skilled individual walk you all through this is independent of which treatments are chosen. In fact, they can help drive treatment decisions once offered.

Here is a resource that describes Palliative Care: getpalliativecare.org/whatis/

There is also a new document just out from the National Comprehensive Cancer Network Foundation that describes staging, tests, and various kinds of treatments that could be helpful to read: nccn.org/patients/guideline... This may help you be prepared with the language and recommendations that may come as a result of the tests. Writing down your questions as you read may be helpful.

If a spiritual or faith dimension is important to your son, or you, I also encourage you to access those resources in this time of great fear and unknowing. Focus on what is important now, what you can do today (or even in the next hour), and set aside anything else that you can. Reach out and accept practical help from friends and family: shopping, cooking, driving, cutting the lawn, vacuuming.

I'm sorry this is an alarming point in your lives.

Missy

[bearkat]

God Bless you. I hear your panic and it brings it all back to me. My son's melanoma spread to his brain and for that reason, he wasn't eligible for clinical trials and some of the treatments. However, I learned so much and part of that was that there are people for whom these treatments really do work. I have read posts of people who are still living 12 years (and counting) after their melanoma spread. Yes, these are few but why not your son? Keeping hope alive while being realistic at the same time is very important for all of you. But, I know, it is also extremely difficult to do.

I will be thinking and praying for you. Hang in there.

[missyrand Ambassador]

ScaredMom5:

checking in on how you all are doing and if you have received helpful guidance and support locally?

You've been in my thoughts,

Missy

[MelanoMORE911]

Hi where are you located did they start any rounds of immunotherapy yet if so inquire about the combo immunotherapy which would be optivo and nuvibulab inbox me more if you want to continue to 12 I can share a lot of information with you regarding my husband Jim stage for melanoma and how he went into brain remission and what we did to get him to that point