New- PLease help

I am so sorry that you are going through this. my husband was diagnosed stage 3 in 2015 and I truly understand the fear you are feeling. your mother is at a great hospital,she will receive the absolute best care. Google Joe Fornear he has an amazing story that will give you and your mother so much hope. 

You will find many people on here that have been NED for 3 to 5 years after yervoy and or opdivo. I started on the combo in July 2016 with 7 mets in my lungs. My last scan on 12/29/2016 had "near complete resolution" in my lungs with no new mets anywhere. My next scan is 3/16/2017 and hope they find all is gone. If your immune system reacts to these drugs they can be very successful. Expect side effects, they will come but I always looked at them that it meant my immune system was reacting and killing cancer.

Not sure why some have wide spread melanoma and some don't. My melanoma went from stage 2b on my scalp to 1 year later I felt a ping pong size knot in my upper shoulder lower neck and had surgically removed and pet scan had 7 mets in my lungs, no other place. If the one in my neck had not been there we would have not found the others as early as we did. If the immune system reacts to the combo and a person can tolerate the side effects over a period of time I think it can kill a 5 cm cancer.

Mets tend to lodge in organs with a rich blood supply, thus brain, lungs and liver. But it can also spread virtually anywhere in the body. It often can be easier to treat if it is in a single location so be hopeful for that. Your mom's situation is serious but not hopeless. You will soon learn much more from her doctors. Try to remain as calm as possible under the circumstances. Many others has survived multiple mets to a variety of organs. Her chances will be greatly influenced by her genetics and the kind of treatment based on that. It takes time for a thurough analysis and treatment plan. Her journey is just beginning so hang in there and get support if you need it!

There are many people living and 'maintaining' their stage IV diagnosis. My husband was diagnosed stage IV in 2012 and he is still here living a mostly normal life.

I understand why you are in shock and panic.  Melanoma is a very serious illness, however there has been very good results with the opvido/yervoy.  I encourage you to always maintain hope, that no matter how hard the days get for your mom as she undergoes treatment, she needs someone besides her Dr's. to give her hope and encouragement thru-out the treatment.  Don't let the fear paralyze you…..take control and always be positive…she needs that. There are many melanoma centers for excellence and Sloan is one of them..the work these centers do is AMAZING and MIRACULOUS.  Blessings to you and your Mom as you embark on a new journey together.

So sorry you and your Mom have to deal with this.  The initial fear and panic is totally understandable.  When my husband was first diagnosed 5 years ago, I was a total wreck.  My advice is to take this one day at a time – try not to worry about what might happen.  Easier said than done!  Melanoma patients have so many more options now than in the past – your Mom is starting in the best place.  Take care.

Ann

Hello,  I am very sorry you received the bad news yesterday but there is still hope.  Many drugs have come out in the last 7 years or so and some work very good.

My husband went to stage IV in Oct. 2010 and started on a clinical trial in March of 2011 with Yervoy (Ipi) 10 mg/kg and GM-CSF.  He had an unresectable tumor on his Cervical Spine at C1 – C2 area and also several in his lungs and liver and even some subcutaneous.  He did the initial 4 doses in 12 weeks of the Yervoy and the GM-CSF was self injected daily for two weeks then 1 week off.  We watched the subcutaneous ones shrink as we took pictures every 3 weeks on the Yervoy day.  The clinical trial he was in after the initial was finished he went into maintenance with the Yervoy to once every 12 weeks while staying on the regiment of the self injected shots of two weeks doing them daily and 1 week nothing.  In July 2012 he became NED (no evidence of disease).  In Dec. 2013 he went off of the Yervoy and GM-CSF completely and he is still NED for over 4.5 years.  If you would like to read more about his journey you can click on his profile.

Try to relax a little as more are living longer and not a lot of people hang around here on the board daily and just drop in occassionally. 

Judy (loving wife of Gene Stage IV and now NED for over 4.5 years.)

I have liver mets (~ dozen) and am presently doing well on ipi/nivo (12+ months).  You can search my posts.  Though I'm seen at UPenn, I consult with Wolchok at Sloan.

Hang in there!  My Dad was diagnosed in August 2016, it was scary as heck and I had a similiar reaction.  It freaked me out!  But, thankfully I found this forum and these wonderful people calmed me down.  My Dad is stage IV with 15 brain mets, spleen 20+,  1 lung and1  thigh.  He has been treated and is currently on yervoy and doing well.  Don't loose hope and don't listen to the internet (especially the old stuff) there are a lot of new treatments available.  As was advised to me: you will feel much better when your treatment plan is in place and you get "settled in".  In the meantime, take a deep breath.

Best.  Jen