Mucosal Melanoma regional spreading

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4/6/2014 1:16am
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Replies: 4

HI Everyone,

I have been free from my original cancer in my left nasal cavity since April 2013. I have mucosal melanoma and my 1 year anniversary PET scan found regional spreading in my left cervical lymph nodes. Lucky me!

An ultrasound this week showed 3 lumps, the largest being 1.3 CM and the smallest .5 CM.  I am a resident of Hawaii, and love my hospital, The Queen's Medical Center. But they suggested I follow up with my contacts from UCLA.

Unfortunately Hawaii only has 2 Head and Neck Oncology surgeons. I chose a 2nd opinion last year for my lateral rhinotomy, and a family member suggested UCLA. I met Dr. Glaspy (Onc) and Dr. Abemayor (H&N Surgeon). Surgery removed any tumor, but they didn't find much after my sinus surgery in Hawaii that found the malignancy. Then Dr. Glaspy suggested Interferon, but said the risks were not worth it for me.

In June I followed up with 30 doses of Radiation at Queen's. And now just following PET scans every 6 months.

 

This new discovery does not scare me, but Dr. Glaspy suggested I look at PD-1. Any one have good experience with PD-1?

I am reading lots of good things online about it. Only quirk is they do not offer PD-1 here in Hawaii, so I may be flying to LA a lot over the next year. Cha-Ching!! Not good on my bank account!

We are ready to kick this Cancer's A$$!!! Wish us luck!!

 

Aloha,

 

Marcus

 

Marcus, I have your blog bookmarked and have been following you :)

I just want to tell you , your video was great!! Such a cute family you have. Love your attitude

 

Keep fighting!!

Becky

Thank you Becky!

 

Hi Marcus!

I live in Hilo myself and also go to Queen's.  Best of luck, I also trust my team there implicity.  They are also well connected to the big names on the mainland as well.  I saw Glaspy as a second op. when initially diagnosed stage IV.  He also made the same recommendations - IL-2.  Fortunately still NED.

I get the having limited specialists in our State, but the Big Island is even more lacking!  Glad one of my oncs. now comes to Hilo monthly.  Saves on the air fare.

If they are recommending you travel for treatment, I would book it on my Hawn. miles CC ASAP.

Wishing you well, mucosal sucks rocks.  Hope the newer drugs will work for you.  I know wild type & mucosal / CKit mutations are harder to crack, but they ARE making progress.

Best of luck,

Aloha,

Kim

PS - Might bump into you during my scans one day - usually go in Feb.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

Thanks Kim!!

I was just enrolled in a clinical trial at ucla and looking forward to kicking this cancer to the curb!

I did book my Hawaiian Air trip and keep moving my return flight home. I'm undergoing all the prelim tests and exams this week. I hope to start "Day 1" Monday!!

I have a super support network with family and friends back in Hawaii. Some are PR pro's who know how to spread the message! My plan is after the first 6 weeks up here in Cali, to return to Hawaii and then fly back every 2 weeks for 2 days of infusion and rest, then return to Hawaii.  I have to continue working and getting my medical insurance and pay from my job, you know, I got kids and stuff!!! I am not giving up, ever!!!

 

Please contact me if you ever come to Queen's, I work there you know?!?! I would love to meet you!! Tell Shane Morita you talk to me here, I know him real well!!!!

At Queen's just ask phone operator for Marcus in Creative Services, they got my number!!!!!!

 

Big Aloha!!!!!!!!!!

 

Thanks from Westwood,

 

Marcus