Stage IV Melanoma

I am sorry that you are dealing with this, Stacijane, but what you have been told is true – you have many reasons for hope!  Here is a primer I put together…that contains a lot of stuff… but arming yourself with up-to-date information may be your first best step to keeping an eye on those babies.

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

As you gain information, and develop more questions…ask away!!  There are many bright, well informed folk on this board who will have much to offer you by way of support and information.

I wish you well.  Celeste

Hi Stacijane – You've come to the right place for answers from patients you have probably 'been there, done that' and for support when you need it.  Most folks here will tell you to run, not walk, to a Melanoma Center.  I'm not familiar with Roswell Park, but perhaps others on here are.  Memorial Sloan Kettering in NYC, Dana Farber (my home team) and several others all have Melanoma Centers.  Post often, ask your questions and be ready to advocate for yourself with your medical team.  Keep up the hope!   I was diagnosed at Stage IV in 2005, several surgeries, radiation and then went to trials – including Ipilimumab (10Mg/KG) which in 2009 got me to NED (no evidence of disease).  Here it is 2017 and I'm still NED.  I relied heavily on this board to ask questions in the early days – it was a support life saver for me.  That and prayer!  Hang in there!

Rocco – Stage IV in 2005, Ipi responder, NED since 2009

Hi Stacijane!

I'm sorry that you are here…but you have come to the right place. I was diagnosed in January of this year, had a WLE and sentinel node biopsy and all was well for about 6 months until what I thought was a cyst showed up in a subclavicular node and scans showed two more nodes in the abdomen.

I will be starting a clinical trial soon with Keytruda and a compound called PV-10 injected directly into the accessible tumor. As you said, Google is NOT your friend and statistics are only statistics (most of them are outdated anyway). Get a good game plan with your oncologist and take the fight to it! This is a great place with many knowledgeable people who have overcame a lot more than just the odds.

Hello Stacijane,  I am sorry you had to join the group but it is a very special group that helps and has been through much.  I understand the brain fog of trying to remember everything at the doctors  appointments so we used to take a small voice recorder and asked the doctor if we may record so we don't forget anything with all of my husbands appointments.  Our doctor didn't mind and it really was helpful.  Also seek out melanoma specialist where ever you go as they are the most up to date with drugs and reactions.  Wishing you much luck and a long life to share with your grandkids.

Judy (loving wife of Gene Stage IV and now NED for 5 years thanks to IPI 10 mg/kg and GMCSF)

Agree with Rocco.  Recognizing that Buffalo isn't close to NYC, I would aim to see or consult with Wolchok at MSK.  Others would suggest Weber at NYU.  It may be possible to be treated in Buffalo, but still have one of these melanoma specialists on your team.  My personal choice given your good status would be ipi/nivo.  Others might say nivo or pembro alone since they have less side effects.

I agree that Google is not your friend. For one thing, not all stage 4's are created equally. There are stages within the stages: 4a, 4b, 4c. I think since the beast hasn't spread to your brain or organs, you would be considered 4a. Similarly, my husband's melanoma appeared as two subcutaneous lumps on his back. And, as my husband's doctor put it: "You don't have much cancer."

And the other good news is that immunotherapy works VERY well when it works. For responders, the prognosis statistics are quite good. For example, (just an estimate) we think my husband's progosis before starting treatment was something like 30% chance for long-term survival. After treatment began and he was confirmed (via scan) to be a "partial responder," we think his long-term survival prognosis jumped to 60%. 

Most of the websites have not been updated to reflect the new reality. You're in the right place. There are good people here, and you can get a lot of good info.

Best wishes,

Betsy

Keep coming back to this forum.  It has helped me and the rest of us so much.  When i would think doom and glloom, the rest would send me suggestions, results of BED and gave me so much hope.  I didn't think i should buy  new shoes, i wouldn't be here next year to wear them.  etc I was diagnosed in May with metastatic melanoma, he did not give me a stage, I assumed 4 from googling.  The abc is not important in my case.  Started with large lung mass, and we thought it was lung cancer.  Long story short, after 3 Yervoy/Combo (still have trouble with abbreviations) treatments, the 4th being cancelled due to high liver panel…on 9/11 most recent Petscan, most of the tumors cannot be seen anymore.  And the large one in the lung is greatly reduced.  With the side effects, rashes, thyroid, liver, fatigue, it was this forum and the advise of others gone before us that gave me hope and suggestions, so keep coming back for their help.  I keep reading the petscan reports and thanking God.  Now to get off prednisone….

Thank you everyone for your posts. Sharon Simi Valley, CA

Hi Stacijane,

From what you have shared it sounds as though you are a stage 3 at the most.  Stage 4 melanoma has involvement of either distant lymph nodes or  organs.  I believe the person that was speaking of stage 4 having different levels was actually thinking of stage 3 which has a, b or c depending on the level of involvement of the lymph nodes.  So this is hopeful news for you!

Having said that, I am a stage 4 patient who has had complete response to immunotherapy, so there is a ton of hope there too!  After you find a melanoma specialist together you will find a path forward.  Best of luck to you!