How Quick Things Change

Hi Mike,

First of all let me say Welcome!  I'm glad you found us.

Unfortunately, your story is not all that uncommon here.  I know that isn't a comfort, but  I trust you'll find this community a place where you can come and find comfort, inspiration, and a laugh sometimes.  

You're not asking for advice, but I'm going to give it to you because I wish I had it when I just started out.

1. learn all you can about melanoma and treatments.  But

2. be very, very careful about what you read on the internet.  Most statistics are very old .  All statistics are at least 5 years old and so they don't reflect the newest treatments (and there are many!!)

3. find an oncologist who sees a lot of melanoma. You want someone who is very familiar with the new treatments, how they are administered and how to manage the side effects.  Most general oncologists just don't have the time to keep up on the new treatments (and as I said, there are a lot of them!!).  If you need help finding a Mel specialist, start another thread here with your location saying you're looking for a doc.  Someone will jump in and give you some names.

Now, finally for the good news, though I've hinted at it before, THERE ARE MANY NEW TREATMENTS!!  Even for Stage 3!

Celeste (AKA Bubbles) has put together a primer that may help you get up to speed on the new treatments.

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

There is also a glossary to acronyms frequently used at the end.  This is helpful for learning the lingo.

I've probably said more than you asked for, so take it slow, and breath.

If you've got any other questions, ask., this is a great community!

Shalom,

Julie

Yes, welcome. And Julie says the rest very well! I would stress finding a melanoma specialist–world of difference. Too, there's a symposium coming up on Feb 9 and it has a session on treatments "New Promising Agents in Melanoma, Where the Field is Going." Register if you want to live stream it. https://www.aimatmelanoma.org/living-with-melanoma/symposiums/

Keep us posted. It's a good group here.

Hi Mike

Sorry about the bad news – have been through all this years ago, by now am kind of used to it, but at the outset it was incredibly shocking. Could not believe what was going on.

I agree with the two other posters – you need to find a melanoma specialist to go through the options.

You might want to consider adjuvant therapy to try to prevent a recurrence. Your specialist would be able to guide you on this. The fact that you are 3a may make this less necessary – I dont know – experts on this board would know better. All I know is that I am stage 3 but with local / regional recurrence – no lymph node involvement, at least not when i was tested years ago. I am too scared to ask which variant of stage 3 I am.

My personal preference is/was against watch and wait and instead to do something – so in your case I would be taking nivo adjuvant. But thats just because if I have a recurrence then I want to know that I tried my best to prevent it. The other strategy is to watch and wait, and then if you are unlucky to try the immunotherapy or other options then. I think key to this is active watching, so you catch any recurrence very quickly.

With luck things will stabilize, either through watch and wait or through nivo. But you need a melanoma specialist to help you through this. Like others on the Board, i would be prepared to travel to do this. 

Good luck

Mark

Hi Mike,

Fellow Michigander here (we were in Ann Arbor area for many years, I grew up near West Bloomfield huge Detroit Tigers fans). Moved to Houston area five years ago, the year my husband was diagnosed, only silver lining was we now live 15 mintues from MD Anderson.  It is a huge shock for sure.  I saw that you mentioned anxiety as a veteran.  Melanoma should be in the dictionary under Anxiety, it can definitely rev up the anxiety engine.  Who wouldn't you feel anxiety hearing news like you have, but Julie gave you awesome advice and treatment is changing rapidly and is EXPONENTIALLY better than it has ever been. My husband was diagnosed 5 years ago, at the time his doctor at MDA  believed he was either 3C or 4. The unknown of this disease (is it spreading, is it gone, etc) takes a while to adjust to and if you have anxiety already, it's a bit much. I was diagnosed with panic disorder/anxiety in my 20' so can relate  We went from the pathology report to surgery in the span of 7 days or so since his was so big (22 mm with no skin component and unknown primary) It was completely out of the blue, one day my husband handed me our life insurance policy, I didn't know why.  He chose wait and watch (he is less prone to anxiety) but he WAS given other options from MD Anderson.  I, myself, would have done things differently had it been my choice.  It's truly your own choice, I would never advise either way but information will be your defense.  Let yourself be however you need to be right now and then when ready gather the needed information and make your decision as a team with a Melanoma Oncology specialist that you trust and make sure you get ALL the available options. This group can help you process any information and give you all the current thinking regarding newer drugs, best treatment, current research and outcomes, experiences with side effects etc.  This group is phenomenal and can make sure you are given the tools to advocate for yourself.

Follow your gut, if you didn't like the oncologist and don't think they are offering you every option, then get another.  You are more than welcome here in Houston if you ever come to MD Anderson.  We will gladly help with anything.

I think the key will be to find a melanoma specialist and list out all the current options for Stage 3.  I'm not sure where you are in Michigan, but if close to Chicago, you can search in this search bar and there are discussions about Melanoma specialists in Chicago at the major research and university centers.  

At this point the key is to make sure you are getting ALL the options offered to you. 

Take it easy on yourself.  I wasn't the patient but the anxiety hit me hard, was frozen at first, couldn't picture how this was all going to go down and then was able to jump into action after a little while.  For me, I craved information, gave me a sense of relief that I could at least control THAT variable! I felt my role as the spouse was to advocate (was armed with all my research :))

I'm sorry you have to be in this group, but glad you found this group.   

Wishing you all the best and that melanoma is gone, stay warm up there.

Jackie

Mike,

I'm a newbie Mel patient too, its been a whirlwind for me as well.   Advice, care and concern from members on this fourm board are awesome.   It really helps to vent what your concerns are questions are, and members here are so helpful and provide a wealth of good advice and resource.  More than that, they have lived through what you, I and other new patients with this bad disease are going through.  

It does get better though the more you hear others got through the early stages we are in now, and there are lot of awesome stories of beating this evil thing.

Peace Bro, hang in there.  

You should find an oncologist in whom you have confidence.    Finding a melanoma specialist oncologist would be good.  However, having a local oncologist is also desirable.   The nearest melanoma specialist oncologist to me is 250 miles from my home.   I went to the Mayo Clinic in Minnesota for my August 2014 SLNB and saw some oncologists there.   Dr Gaba has been my oncologist since September 2014.   She treats other patients with melanoma, but melanoma is not her specialty.   I knew her from running, before I had melanoma.  I can walk to her cancer center and have been pleased with her care.  In March 2016 I had melanoma in many bones.  Yervoy + Opdivo immunotherapy made my bone cancer disappear.   I have been receiving immunotherapy for over 3 years.  Being able to walk to the cancer center has been convenient.