Melanoma - A little support

chadou23

I am new here, and see that a lot of people get great support. Long story short about my melanoma experience. I had a mole removed on my left scalp when I was 21 yrs old that was positive for melanoma, then followed by a large excision (clear margins). They also removed a few lymph nodes in my neck on the left side for precautionary measures that were clear. 9 years later, a small tumor showed up in my larynx which I felt as a tickle in my throat. They biopsied that and it showed positive for melanoma. They immediately were baffled as to how it showed up there. They did a large excision surrounding my tumor inside my throat and margins were clear. The surgeon did an amazing job at saving all vital functioning organs in my throat. I went through interferon for 5 months and then a lymph node on my right neck popped up showing positive for melanoma. I had a radical neck dissection in March 2011 and 4 nodes showed positive out of 29. I then completed 20 bilateral high dose treatments of radiation to my neck which I just completed 2 weeks ago (PET and CT scans showed nothing). My throat was torched and I had to deal with many ulcers. A node now on the other side of my neck just popped up and I am dreading the fact that it might have somehow survived through the treatments. I just saw my surgeon and radiologist, and they are saying they are 95% certain the swollen node is from all the drama in my throat. I am on antibiotics now for 3 days with node not shrinking at all. I am so young and so tired of trying to fight this disease. I am praying to God everyday that this is the last step I have to take in this fight. I am dreading of having to have another neck dissection, and am having a hard time understanding how this node (if positive for melanoma) immediately popped up in the area that was just blasted by radiation. I really hope my doctors are right, I am just scared. I have been so strong, but it's a lot to deal with at the age of 30. Just looking for a little support!

Tirian

Wow...
My gosh, you have been to hell and back and there again. For so many of us with melanoma who haven't been through the trials you have, it's a stark reminder about the nastiness of this kind of malignancy. Honestly, you should be out there worrying about how to spend summer plans versus whether or not you're going to get "the call" again from your doctors.

There are so many of us out here who have broad shoulders for you to lean on through the boards, but know that sometimes it may be several weeks between when people log on. Please feel free to reach out anytime.

If you haven't already, reach out to ACS. The folks there are wonderful, and if you forget to follow-up with them, they will reach out to you. That has been my experience.

Positive energy and white light is coming your way from the west coast. Your life experiences have given you a strength that you probably don't know you possess. Draw from that when you can.

Take care, and please let us know how you're doing!

Tirian

Kellie_T

Don't wait to live.....
I hold my breath when the doc walks in after the morning scans but I don't stop living. I am on my second go-around with Melanoma. First was a mole (on the outside of my left knee) my GP said was nothing turns out it was something...Melanoma. I had a wide excision and sentinel node biospy. Margins and node were clean. Fast foward from 2006 to Sep 2010 and I find a swollen node (pea sized) in my left groin. No symptoms just a little bump that didn't hurt. A PET scan then biospy confirmed metastisized melanoma. One radical groin dissection; 30 radiation treatments later and I'm currently NED. I did not choose Interferon. I'm currently on a Phase I clinical trial. An immune system booster coupled with a Melanoma vaccine and I'm living my life. I live it for myself; my family and my friends. Don't wait around for the cancer to get you. I haven't gone through the years of it as you have at such a young age but this isn't my first time dealing with cancer. When my son was 7 years old he was diagnosed with Non-hodgkin's lymphoma. He was pretty much stage IV and not expected to live through the first dose of intensive chemo in the ICU. 4 months of treatments and he was in remission. Did I mention that he is 24 now, a college grad (UCF) and runs 3 miles a day to keep in shape. Bottom line - LIVE. Miracles are out there. I raised one.

chadou23

Kellie_T said:

Don't wait to live.....
I hold my breath when the doc walks in after the morning scans but I don't stop living. I am on my second go-around with Melanoma. First was a mole (on the outside of my left knee) my GP said was nothing turns out it was something...Melanoma. I had a wide excision and sentinel node biospy. Margins and node were clean. Fast foward from 2006 to Sep 2010 and I find a swollen node (pea sized) in my left groin. No symptoms just a little bump that didn't hurt. A PET scan then biospy confirmed metastisized melanoma. One radical groin dissection; 30 radiation treatments later and I'm currently NED. I did not choose Interferon. I'm currently on a Phase I clinical trial. An immune system booster coupled with a Melanoma vaccine and I'm living my life. I live it for myself; my family and my friends. Don't wait around for the cancer to get you. I haven't gone through the years of it as you have at such a young age but this isn't my first time dealing with cancer. When my son was 7 years old he was diagnosed with Non-hodgkin's lymphoma. He was pretty much stage IV and not expected to live through the first dose of intensive chemo in the ICU. 4 months of treatments and he was in remission. Did I mention that he is 24 now, a college grad (UCF) and runs 3 miles a day to keep in shape. Bottom line - LIVE. Miracles are out there. I raised one.

Thank You!
Thank you Tirian and Kellie T for your support!! I just received fantastic news today from my biopsy of the lymph node. There was no melanoma found, it was a large node fighting off an infection from the radiation. The sun seems so much brighter now, and I am looking forward to a nice celebratory dinner with my fiance! Hopefully this never returns and I this battle was all just to help me become the person I am today. Thanks again!

menang

chadou23 said:

Thank You!
Thank you Tirian and Kellie T for your support!! I just received fantastic news today from my biopsy of the lymph node. There was no melanoma found, it was a large node fighting off an infection from the radiation. The sun seems so much brighter now, and I am looking forward to a nice celebratory dinner with my fiance! Hopefully this never returns and I this battle was all just to help me become the person I am today. Thanks again!

Have you considered IPI for Stage III disease?
I am assuming that they have put you at stage III. Just to let you know, they are now doing a clinical trial of IPI (now marketed as Yervoy) for Stage III melanoma. It has had positive results for Stage IV disease, and if it had been available for my husband at stage III, he would have done it.

Stay vigilant without being paranoid (an oxymoron for sure), and you can find additional information at www.melanoma.org. Congrats on the nuptials and for goodness sake - enjoy it!!

Best wished on for continued NED status!!

Maria

thomasman

sorry to hear about it, but
sorry to hear about it, but very, very glad to see you have God. one thing that has gotten me to where i am today is letting God and the doctors do what they do best and keep my nose out of it. man, thats easy to type!LOL. cant say i always did it, but it works. yeah, lymph nodes in the neck will swell even with a sore throat. its their job to get rid of the bad stuff. one thing i had to do is gain trust in my care team. i learned that, well, i wasnt their 1st patient and they really know what they are talking about. i find it necessary to say this: start praying to God for the strength and courage to go through this battle one day at a time. it can be very hard and freightening to go through this battle, and along with God, i have had the support of people who have gone through it or are going through it too. oh man how i can relate to not understanding what was happening and why. i had a wide area excision and axillary surgery at the same time and 2 months later the crap came back in the same spots. more surgery. IL-2, surgery, IL-2 again, came very close to dieing during that one, PET scans, MRI's, CT scans, blood draws, doctors appointments, more surgeries it seemd like a never ending thing and i got very, very mad...at God and everything!! i blew up one night while in my shop and was screaming at God. man, i was pissed and scared. i think you can imagine what i was saying. when i was done, i sat on my stool and was crying. i could fell, i mean literally feel, God holding me. He told me," it's okay and i am here. you dont know why this is happening, but please, trust me, i do know why." WOW!!! the peace that came over me was amazing. since then i have come to believe i am glad it has been me and not someone that didnt know God and couldnt handle it. PLEASE stay close to God and keep close to other cancer survivors and fighters.