Feeling anxious

Hi Amie,

I have been Stage IV since 2005 and have had no evidence of disease since 2008…just celebrated the 10 year anniversary.  There are many more options to treat melanoma in 2018 than there were 13 years ago.  Actually, I was diagnosed in 2004 as Stage III and advanced to Stage IV about 2 months after completing 12 months of Interferon.  Yes, it was terrifying and discouraging.  I attended a MPIP Bash (there used to be an annual get together in various locations in the country so we could meet in person these wonderful people we met on this melanoma board).  We would hear some heartbreaking stories but also some very positive stories.  It's a roller coaster ride but there are many long term survivors around…we don't frequent the board very often because we are living our life to the fullest.

Wishing your family the very best!  One step at a time.  You've got this.  The people on this board gave me the support and advice for the battle. I am still friends with several of them.  I am finally on "routine" scans every 9 months.  They are due this month.  I will check back and post my results.

Stay Strong

King/Kathie

I was diagnosed Stage IV in September of 2016.  At first I felt like I didn't belong.  The thought that "I'm not like the other patients" would run around and around in my head.  It was scary and unknown.  I didn't know what to expect or what to do.  I was terrified I wasn't going to make it.

Fast forward to May 2018.  I'm still here and I'm strong and relatively healthy.  I had 27 tumors at the start.  Now they are hard pressed to find any.  I'm not the same but I'm alive and living my life.

 Everyone's journey is different.  Try not to get caught up in other people's stories.  Every time I go in for treatment I see other patients who are going through much tougher times than I am.  Even at my worst I wasn't the sickest one in the waiting room.

My advice is to wait and see what comes your husband's way.  His journey might not be that bad.  Mine certainly wasn't.  The emotional piece is sometimes the worst.  I wanted to be prepared and I started to prep my husband for when I was gone.  I taught him to cook, and to do the laundry and pay the bills.  We went to a lawyer and finalized our will.  I explained the plan with the life insurance and how he should have enough to pay off the mortgage and then live comfortably for a while on the remainder and his income.

None of it was necessary – except that I'm the kind of person who needs a plan.  I needed to do it to feel comfortable.  I also went to a couple of therapy sessions offered at my treatment center.  They also have some for care givers and spouses.  It can be very helpful to talk to someone who isn't your spouse.

I wish you both well.  

Jennifer

Okay Coragirl, take a deep breath, let it out and relax X5. You will be getting a lot of responses to your message. There are plenty of stage IV patients that are now NED. There has been fabulous improvement on the treatment of melanoma patients. Make sure your husband is in a melanoma treatment center. MD Anderson is one of the best.

My story : stage IV during 2012. Cancer in brain, lungs, liver, kidney, gall bladder and adrenal gland. Three Gamma Knifes, two brain surgeries and dual treatment of Yervoy and Opdivo were my treatment. 5.5 years of  NED and I only see my oncologist once a year. So it's a lot of appointments, worry, prayers said,  but I feel you'll end up all right. Ignore the statistics on the internet, really old school. 

Enjoy your lives, have a great summer.

Hopefully and most likely, with the immunotherapy treatments, your husband will not have the melanoma as extensive as me. Amie your family shall stay in my thoughts and prayers to God for a good time. Your husband is in a good time period for melanoma, ten years ago it was hard to find hope.

Hi Amie – my husband was diagnosed in 2012 at Stage IV with mets to his brain and lymph nodes.  He's had some very rough patches with 3 brain surgeries and other treament side effects but is still here 6 years later. We've had long periods of relative calm between the rough patches to catch our breath but the battle continues.  We try to take it one day at a time – his inner fortitude and upbeat attitude is amazing.  I've learned that you can only worry about the trouble of the day – worrying about what might happen tomorrow, next week or next month only takes away from the time you have.  Researchers have made leaps and bounds in the options available to Melanoma patients over the past 6 years and your husband is in good hands.  The feeling of desperation still comes to me at times  and I totally remember the panic and heartache throughout the early days (ok….years) but you will get through this.  Take care.

Ann

Hi Amie, 

You already know my story. I'm glad to hear that you'll be going to MDA, as you know from my previous posts I'm a huge fan of them and their providers. I think once you are down there and getting started you'll both feel better mentally. I know that was a huge turning point for me, I don't do well with sit and wait approaches and like to be proactice in life. Once treatment began I truly felt like I was "in the fight" instead of sitting on the sidelines waiting. As another poster mentioned, in the waiting room you will likely see people who are having a very rough go of it and you will see others who seem healthy as a horse. Perspective. Ultimately I encourage you both to stay positive, there can be a lot of doom and gloom in this fight if you entertain it. You are in great hands and your mental state (both yours and his) will play a big role in this battle. Take the fight to the enemy even in mundane ways, enjoying simple things, taking stock of the "good stuff", being present in the moment (rather than the what ifs) all contribute to winning this war.

Warrior On!!