Learning more about Melanoma - Young Adults with...

Young Adults with Melanoma
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Learning more about Melanoma

scastdel
scastdel

Hello! My name is Samy and I am a senior in high school in California. I am taking an Anatomy and Physiology class this year where all students participate in the Chronic Disease Project and are assigned one depending on a variety of factors. I was assigned to study malignant melanoma because my grandmother is a survivor from when she was diagnosed at 83 years old. I wanted to ask if your group would be willing to share your stories and experiences about melanoma with me so that I can better understand how it is to live with a chronic disease? I understand that this is a very personal request I am asking and understand if you prefer not to. I appreciate your time and hope you all have a great night!

14 Replies
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I Samy,

I would love to help you. I was diagnosed I was diagnosed in 2009 with stage 1 and then on October 1, 2012 with stage 4. If you would like to be in contact let me know. Robyn

Kevin0301
Kevin0301
in reply to Robynfine

Hi Robyn,

I am so sorry to hear your story.

I was diagnosed stage 1B two months later. My PET/CT and lymph node biospy is clear. I’m so scary about metastasis after sugery. What do you follow up for your case ? Best wishes for you ♥️

Robynfine
Robynfine
in reply to Kevin0301

Hi Kevin,

In the beginning I was seeing my oncologist every month for Brain MRI and then the following month for a PET. This went on for some time, then we stretched it out to every three months now I’m at every six months. I see my dermatologist every three months. I am very careful about UV exposure and I check my skin all the time. I take vitamin D to help with my immune system and try to eat a healthy diet. Exercise is important too. I live with Awareness not fear. Best wishes to you! Keep up the fight!

Robyn

Kevin0301
Kevin0301
in reply to Robynfine

Hi Robyn,

My oncology doctor said me CT 6 month, and Pet/ct 1 year after surgery. My melanoma is acral lentiginous (my big toe nail). My breslow is 1.5 mm. Mitosis rate : “ possbile up to 1”. Not ulceration. Your stage 1 follow up is brain mri every month, pet every month. Is it so many ?

Thank you so much

Asp2013
Asp2013
in reply to Kevin0301

Kevin! That’s great news! Minimal Breslow and no ulceration ! That means you have a very small likelihood of reoccurrence! And I believe 96% survival rate for next ten years! The numbers are improving all of the time!

Robynfine
Robynfine
in reply to Kevin0301

No my stage 4 was when I was receiving a brain MRI bimonthly. My brain mets grew fast so my onc wanted to make sure nothing new was popping up. My PET was bimonthly too. Since mets were popping up too.

Kevin0301
Kevin0301
in reply to Robynfine

I am so sorry to hear that. But your follow up when you stage 1 is ?. I am feeling scare about distant metastasis every night. Thanks for your support.

Robynfine
Robynfine
in reply to Kevin0301

For stage 1 it was derm appts every 3 months and then every 6 months. Make sure you are also doing your own skin checks. If something doesn’t look or feel right, get it checked out. Of course, sunscreen, UPF clothing and seeking shade is what you have to do.

Robynfine
Robynfine
in reply to Kevin0301

How you doing??

How did your project go?

scastdel
scastdel
in reply to Robynfine

Hi Robyn! I am doing great, how are you? My project has been doing well too. I've been lucky enough to speak with a dermatologist and oncologist about their work with melanoma and hope to hear back from a dermatopathologist soon to gain a full understanding of the medical aspect of melanoma. Your personal story was really helpful to understand the personal effects of melanoma and your story along with my grandma's helped me while I presented about the personal effects of it. I am still working on my project and hope to join seminars and also raise awareness by going to the beach and handing out sunscreen and flyers to engage with others. I still have a couple of months before my final presentation so I am excited to continue learning about melanoma and developing my understanding of it. Thank you again for your incredible help with my project!

Robynfine
Robynfine
in reply to scastdel

Good morning! I am doing well. Had a couple of scares this past month. Had a kidney stone and on the scan there was a small lesion on my liver. Of course I freaked out, called my oncologist. He had the radiologist at Mayo look at the ct scan and said that there was nothing there! He bumped my brain MRI and my PET scan up to February 7 instead of April. I also had a severe rash and was seen by an allergist/dermatologist. It was not cancer related though. I met a guy online and I’ve been helping him navigate his stage III diagnosis. I have so much experience with this disease that I wish I could help people for a living. I gladly volunteer my time though! I am heading to Washington DC in March for a melanoma advocacy day on the hill. I also have plans to talk to MN Department of Transportation and one of the County Public Works Departments regarding sun safety. Glad your project is going well! It’s great you got to talk to an oncologist and a dermatologist! Have a great day!

scastdel
scastdel
in reply to Robynfine

Wow, I am glad to hear that your scares haven't been serious and I hope that they're resolved soon. It's exciting to hear that you'll be going to DC and talking about sun safety, I hope that it goes really well and that more people start to practice safe habits concerning sun safety. I wish you the best during your trips and would love to hear about how they go! I hope you have a great day too!

Good morning! I am doing well. Had a couple of scares this past month. Had a kidney stone and on the scan there was a small lesion on my liver. Of course I freaked out, called my oncologist. He had the radiologist at Mayo look at the ct scan and said that there was nothing there! He bumped my brain MRI and my PET scan up to February 7 instead of April. I also had a severe rash and was seen by an allergist/dermatologist. It was not cancer related though. I met a guy online and I’ve been helping him navigate his stage III diagnosis. I have so much experience with this disease that I wish I could help people for a living. I gladly volunteer my time though! I am heading to Washington DC in March for a melanoma advocacy day on the hill. I also have plans to talk to MN Department of Transportation and one of the County Public Works Departments regarding sun safety. Glad your project is going well! It’s great you got to talk to an oncologist and a dermatologist! Have a great day!

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