My Experience With Melanoma

[Ryan2]

Obviously, my name is Ryan. I am 28 years old. I currently have stage 4 melanoma. I will share my story in order to help those whose path intersects mine. If you ever have any questions, feel free to ask. The time I have been blessed with is best used helping others. When I was 21 years old I was abusing drugs and not taking care of my body. A tumor began forming inside of my right ear, but I thought that it was just another thing to be picked off of my body and so I did. This thing, however, grew back bigger each time I picked it off. I decided I’d go have a dermatologist take a look. They froze and biopsied it in the office. I told my family and significant other at the time that it was cancer. The doctor told me that the test came back positive for melanoma and that I needed to see the ENT surgeon. The surgeon removed a small portion of cartilage. Shortly after several more lesions appeared on my ear, and after another biopsy, they were call satellite nodes. The same surgeon then removed my entire right ear. My oncologist suggested that I go into a trial for ipilimumab. I could get a high dose, a low dose, or interferon randomly. I got chosen for what later turned out to be the FDA approved dose of what is now commercially called Yervoy. I finished each dose with no side effects. I continued to have scans as scheduled, and I continued to abuse drugs. For six years I lived, remaining free of cancer and eventually living a life free of drugs and alcohol. In August of 2018 I began to have headaches, and 3 days later I lost my speech. My lovely girlfriend demanded that I go to the hospital, otherwise I would have not survived the following and likely harmed someone on the road. I had my first gran mal seizure on the way to the hospital. I had a tumor in my brain, and it was bleeding as melanoma tumors tend to do. If I didn’t have surgery, I would die, but I could not speak for myself. My mother, with much pushing from my girlfriend, gave the go ahead. The phenomenal brain surgeon did the surgery successfully, I woke up with the miracle of my speech and almost all of my memory. All I have left of the surgery that saved my life is maybe one gran mal seizure per month. The doctors told my girlfriend that the cancer was stage 3, and off we go. A month later I began to have pain in my chest, my oncologists scheduled a scan. Immediately after the scan she demands I go to the closest emergency room, so I did. They performed a surgery to biopsy the tumor in my lung. Pathology came back clean. Oncologist sent it again and it was melanoma. She began giving me keytruda, and slight pain medication. A month later my hip became painful, and shortly after my knee became painful. The doctor ordered a PET scan. Shortly after I walked with a cane because of the pain, and at this time I went to palliative care and my memory is hazy due to the pain medication but after a week or so of using a cane, I needed to use a wheelchair. The scan, as my girlfriend and oncologist recall, showed cancer from neck to toe, except my arms, bones and all. I had a couple of weeks to live, MAYBE a couple of months. She prescribed the taf/mek combination, and my girlfriend sprung into action. What happened the weeks after is nothing short of a miracle to me. I do what the doctors say, I take the medicine how it recommends me to, I eat and take the things that my wonderfully supportive beautiful girlfriend says will be good for me, and the cancer leaves my body as quick as it took it over. I was in a wheelchair on October 31st 2018 with scan results that leave me weeks left to live, and my scan on December 26th showed an almost absence of cancer. I continue to live a life with no symptoms. While a few months may seem menial, I am grateful for every day I breathe air into my lungs and put my weight on my legs. Every moment I move throughout the day with no pain is a moment so many others don’t have and so I want to help every person in any way that I can. I love you all and if there is ever a question you have, about what I do or even personal, feel free to ask me. I hope you all can find peace.

[z123]

What supplements are you taking? Did you also follow a natural protocol? Thank you

[Ryan2 in reply to z123]

For supplements, I take vitamin D3, omega 3, 3 mg of melatonin and, since the medicine is working my liver hard, milk thistle. There is also a liquid oxygen that is dropped in my water twice a day. I only drink water or healthy teas, club soda is a treat. I also eat turmeric and/or drink turmeric tea daily. My doctor did say to include a mushroom in my diet, or take a mushroom supplement but I failed to implement that. As for a natural protocol, during the worst storm of cancer we did the best we could with organic foods and mostly vegetables. My meat intake was like a treat. Salt and sugar disappeared (later we found sodium in reasonable amounts is likely non-harmful) However, the better I got the more relaxed I got with my diet, which is something I consistently work on. I hope this helps you! If you have any more questions, don’t hesitate. I wish you the best!

[Robynfine]

Hi Ryan, what a warrior and miracle you are! I’m so glad you have a great girlfriend and a fantastic melanoma team! They did save your life! I am also stage 4 and have been through some rough times and I believe you and I give others hope! This disease is a sneaky bitch! It is so important to listen to your body and know your body. Take care my friend. Best to you in your health and life

Robyn

[Ryan2 in reply to Robynfine]

Thank you for the kind words! I’m so happy that you’re doing well and use your time to help others as well. I’m glad that surviving filled us with gratitude 😊. Unfortunately my team of doctors does not believe me being in tune with my body, scans won’t be moved. I believe that any pain anywhere worries me much more than normal so likely I am wrong. I wish you the best as well, please continue to update us with your treatment and such.

[minamori]

Hi Ryan2, Thank you for sharing the amazing story. May I ask what taf/mek means? Also, did your oncologist recomend the natural diet and supplements? If so, would you mind sharing the name of the doctor and what hospital she works?

Thank you!

[Ryan2 in reply to minamori]

Of course. I am glad you enjoyed it. Taf/mek is a combination of two medicines called tafinlar and mekinist that is designed to attack melanoma with the BRAF mutation. I call it chemotherapy but truly they are targeted therapy, which means they leave most non-cancerous cells untouched. I still have a few gray hairs, and my hair still falls out a bit but the side effects are almost unnoticeable for me. My oncologist did not recommend my healthy diet, she recommended that I put weight on because I was almost bones. The lovely doctor that adjusted my habits like eating, made sure I meditated, recommended my supplements, etc. was my integrative medicine/palliative doctor. She is the best doctor I’ve ever seen. Her name is Dr. Chiaramonte and works at Gilchrist out of Greater Baltimore Medical Center. If you have any more questions, or if you want to know the recommended supplements don’t hesitate to ask.

Thank you for asking 😊

[minamori]

Hi Ryan,

Thank you so much for the information about Dr. Chiaramonte. I really appreciate you sharing her name. And please know that as a mother, I am sincerely happy for your recovery, especially because my son who had the same disease and was around your age, lost the battle last year. I wish I knew about your doctor sooner. So when I read your post, I was thrilled about your remarkable recovery and hope that you will be totally cured for my son's sake as well. Please continue whatever you are doing to fight this off and survive.

Additionally, I asked you the doctor's information, because I have another son who has a different type of cancer and I am interested in the integrative medicine for him.

I hope she will accept new patients

Thank you again!!! ^_^

[DeniseHairy]

I'd like to know if your doctor has any peers in the Chicago area. It's been recommended I try palliative care, but there are few doctors in my immediate area to choose from. Chicago is an hour away, downtown might be a bit further ---but if there's a doctor who knows her or his stuff when it comes to changing body chemistry to discourage cancer cells, specifically melanoma ---I'd consider it.

The doctors I have seen are not knowledgeable on the diet side of things. Which I think is a big mistake.

[Ryan2 in reply to DeniseHairy]

Denise,

I am sorry to hear that you need palliative care. Also, the speciality that you’ve mentioned is integrative medicine I believe. Luckily I see her this Monday so I will certainly ask if she can recommend someone in the Chicago area.

Yes oncologists that I have seen are not interested in diets, or changing our bodies chemistry in any way besides pharmaceuticals. It is a shame we are left to our own devices to synergize our chemistry and their drugs, but thankfully we have places like this where people discuss their experiences. In defense of oncologists, the studies and meetings they take part in seem to be interested in extending our life, if not curing it. The work they have done so far is the main reason I could respond to you today.

I hope to be able to give you the name of a doctor by you soon.

Ryan

[MarketingHU]

Hey Ryan2 , I found your story very inspiring, thank you for sharing it. We are doing a series of user stories on HealthUnlocked, and would love to feature yours. Would you be keen to have us share your story on our external social channels? Here is an example of another user story for reference: instagram.com/p/BuLVtFrnv9A/

Thanks,

[Ryan2 in reply to MarketingHU]

Thank you! I’m glad to hear that. You have my permission to use my story wherever it may help or inspire anybody. If you need any more information, a picture, an email or anything else, just let me know!

Ryan

[MarketingHU in reply to Ryan2]

Thanks @Ryan2 - that means a lot. If you could send me a picture to post alongside your story that would be really awesome. My email is [e-mail] - thank you so much! Have a lovely evening