ROLLCALL: Stage 3 and 4 NED

Stage IV NED check in – started w/ a 4.1 nodular melanoma on the chest in 2008. Refused interferon and went on the watch and wait. Jan. 2012 sheet hit the fan – melanoma in brain, both lungs, gall bladder, liver, kidney and adrenal gland. At Yale – Smilow had 1 gall bladder removed, 2 craniotomies and 3 Gamma Knifes to the brain. Was accepted into the very first ippi / nivo trial. 8 months later, no sign of melanoma, 6 years NED right now. 

I had my 2 year NED scan this August! Diagnosed in March of 2015 Stage IIIB with WLE and moved cross country to be near treatment that I trusted. Upgraded to IIIC by the end of that year due to in-transits in my leg. CLND in the left groin during the holiday season with lymphedema ever since. Tried Interferon (which was useless), then moved to Ipi/Nivo combo when in-transits continued to pop up. I only got through 2 rounds due to gastritis/colitis and high liver enzymes. Lots of side effects from treatment and steroids, but I'm still here for roll call today!

My biggest hurdle with all this wasn't the treatment, though. It was the mental battle that was raging inside my head day in and day out. I was paralyzed by fear and anxiety of all the "what ifs" – what if treatment fails? What if I have side effects? What if my life will never be the same?

Well, my life isn't the same. But by gosh, I'm so glad it's not the same. Battling cancer made me find courage within myself that's changed my life. Right now, I'm starting my own business. My marriage is rock solid. And I'm happier than I was before my diagnosis because I realize that every day is precious. EVERY day. Even on my worst days, there's something to be grateful for.

I know I can't be the only one who was hit hard by the stress of cancer, so I created a Journey Journal for those going through the battle. Journaling and my blog helped me through the darkest times in treatment, and I hope to help others in this way. I'll be giving out these journals this weekend at a local walk for cancer called Jen's Friends https://jensfriends.org/wordpress/

To all those going through the toughest times right now – I get it. Everyone on this board is with you. Cancer was the scariest thing that could ever happen to this 30 (something) year old. But I REFUSE to let it hold me down. Cancer was just the end of the beginning for me – NOT the beginning of the end. Now it's my turn to make the second half count!!

Wishing everone health and true happiness!

Lauren

Unknown Primary Stage IIIB 

Diagnosed November 2010 after two enlarged lymph nodes were removed from my left axilla on Black Friday. Now that I think back on that, it's rather weird since the color black is associated with melanoma. The larger of the two was positive for melanoma. Follow-up CT scan was clear. Never had a mole. This was done at a local hospital. The surgeon recommended seeing a melanoma specialist and the closest one was at Johns Hopkins.

At Hopkins they informed me that I would have to undergo a full lymph node dissection in the left axilla. First question out of my mouth was "why?". I already had two lymph nodes removed, only one of which had the melanoma and the subsequent CT scan was clear. Because my primary was not known, the exact sentinel node was not known either, so I could still have melanoma lurking in those remaining axial nodes. Later I learned that this is the normal procedure for those with unknown primaries.

I had the worst Christmas, New Year's, and Birthday that year. It truly sucked.

In January 2011 I had the full axial dissection done in my left axilla. All the nodes that were removed were clear. 

I saw oncologists at University of PA and Hopkins to discuss treatment options. Back then all they had to offer was Interferon, Close Observation, or Clinical Trial. The trial for Yervoy was just wrapping up so I just missed it but Hopkins offered a trial for a MAGE vaccine. I was rather shocked to hear the statistics for Interferon from both doctors. It didn't have a huge benefit over Close Observation. Statistically, it delayed recurrence by about 12 months. However, you had to take the drug for a year and the side effects were pretty harsh. For the MAGE trial you had a 2/3 chance getting the drug, plus you had close observation on top of that. So, the trial had the best of both worlds for me and I opted for that. Sadly, about two years into the treatment the trial was closed because everyone participating in it was doing well and there wasn't enough of a benefit to it to continue with it.

Fast forward to 2018: I get ultra high resolution CT scans done at Hopkins twice a year. Just had one last week and got the all clear. I do have mild lymphedema at my left elbow that manage it with compression garments. I still play the piano, we travel — basically am just living my life. 

Had a tiny ant bite sized spot removed off my right shoulder in May 2017.  Came back as amelanotic melanoma.  Had a SLNB and WLE a few weeks later and the SLNB came back positive. So I was staged as 3B.  Had a CLND a few weeks after that.  No melanoma found on any other lymph nodes.  Just finished a clinical trial of Ipi/Nivo that I was on for almost a year. All scans have been clear.  Still showing as NED.  In some ways this diagnosis was a good thing.  It made me realize what's important.

Stage 1B back in 2007.  Came back as stage 3 in 2015 and eventually progressed to stage 4 in 2016.  I have had 14 surgeries, several rounds of radiation, 1 dose of IPI/NIVO (major side effects), 25 doses of Pembro and have been NED for 6 months.  My last onc visit we actually discussed the possibility of a finish line for treatment.  Next round of scans are 9-27-18.  Onc says we will evaluate our plan at the results appointment.  Never give up the fight against this beast. 

-Brad

I follow this forum for my daughter because it gives me assurance that people survive melanoma.  She's diagnosed IIIb.  An existing mole on her right neck started to change color.  Biopsy showed nodular melanoma.  WLE and SLN showed all clear.  I month later a nearby lymph node was enlarged.  FNA showed melanoma.  Lymph node dissection of 26 nodes and part of parotid gland removed,  Except for the one lymph node all was clear.  Completed 3 rounds of biochemotherapy.  Just celebrated 5 years NED.

It's creeping up to the date of my last melanoma related surgery (November 2017) which means in a couple months I'll have a full year of NED status, woo! Story is kinda long… but it's all fully documented in my profile for anyone to read if you'd like. Hope we all get to hang our NED badge up and keep it there some day!

Stage IV since April 2013. Yervoy, MEK, lung lobe removed, 2 crani's, gamma knife x10, Keytruda for 20 months. Body went NED January 2015. Brain has one tid bit of scar tissue in the left occipital, but nothing new noted since Feb 2016. Here, clear, and accounted for! Next CT is in 2 weeks. Next brain check in 6 weeks. Forever crossing fingers and toes, cheering for fellow fighters, and living each day like it's a treat to wake up! 🙂

Stage 3 here!

2008 Mel found on the back of the hand.  Since then it's tried to crawl up my arm.  But so far with Ipi, Pembro and many, many surgeries we've been able to keep it in check.

As my doc says, my mel is slow, but it's darn smart and persistent.

Love and blessings to you all!  And of course Shalom!

Julie

Stage 3c 6 positive lymph nodes removed in my neck. Had a neck dissection they removed 97 lymph nodes. Had 4 doses of high dose IPI blew out my pituitary glad. Have been NED for 2 years now. 

Stage 1 in 2006.  Stage IV in 2016.  Over 27 tumors including brain mets.  My story starts with a fight to get biopsy done, then a stroke, then treatment with ipi/nivo but only two infusions before hepatitis.  Next a three month stint on steriods and immunosupressors.  Next three months of wait and watch then aggressive brain tumor removed via surgery.  This left me with seizures and a numb leg/foot.  Darn tumor started growing back 10 days later.  Targeted brain radiation and nivo to get rid of it.  Now onto the good news… brain tumor is gone.  The ipi/nivo took care of the original 27 tumors.  Scans show only ground glass.

Still on nivo but side effects are minimal.

Love to read all the positive stories.  When I had my initial diagnosis I thought I was a gonner.  Turns out I'm here to stay.  

Good wishes to you all

Jennifer

My husband (3C) had a CT scan today and it’s clear! (Study coordinator totally gets scanxiety, and she/the doc provide results lightening fast.) Info is in my profile, and it hasn’t been that long since initial diagnosis (super-sized primary, huge WLE with skin flap (needed plastic surgeon), two positive sentinel lymph nodes, no CLND since like many others, our melanoma center no longer does them). NED, the prettiest letters in the alphabet.