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People of HU - Where are they now? Ryan's journey with metastatic melanoma

SaskiaHU profile image
SaskiaHUHealthUnlocked
12 Replies

Hello everyone, I hope you had a great week and are looking forward to a relaxing weekend.

Two years ago Ryan, a musician battling metastatic melanoma, shared his story with us. We recently caught up with him to see how he was getting on. Ryan is a true inspiration and a beacon for supporting others going through similar experiences to him - thank you for sharing your journey with our members.

Ryans original post can be found here: healthunlocked.com/latest/p...

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I am 31years old and I am honored to share my story of being diagnosed and treated for melanoma. If my experience can help a single person, it makes me feel whole.

First, I want to point out that during my melanoma diagnosis I made it to a 12-step program. Without this, my addiction would have killed me. In 2011 I was diagnosed with stage 3 melanoma in my inner right ear and that ear was removed completely. I was lucky to end up with the perfect dosage of a monoclonal antibody medication during its first clinical trial. After many infusions of this drug that activated my immune system, scans from 2012 and 2013 showed a complete response and I no longer needed treatment.

Over the next several years, I repaired other damages in my life, and in 2016 I began to live a dream with Kelly, my perfect partner. In August 2018, an immense three-day long headache eventually turned into an inability to speak simple sentences and even words. A grand mal seizure sent me to the hospital in Baltimore, Maryland, where the doctors found a large tumor in my temporal lobe was bleeding. A phenomenal surgeon saved my life the next day by removing the tumor in its entirety.

Following this surgery I had to take steroids to reduce the swelling, so I could not begin immunotherapy immediately. I was also having grand mal seizures two to four times a month, which made taking care of my grandmother with Alzheimer’s practically impossible. After I finished the steroids, I got an immunotherapy infusion. Around this time, I was having bone pain in my hips, legs, and spine. It made walking and sitting extremely difficult, but I was grateful that I was still able to play my guitar!

The next scan showed that I had mass spread of cancer throughout my entire skeletal system yet it spared my arms. I was given about a month to live – until Christmas of 2018 – if I was lucky. This is when I started a combination of medicines that is used to treat metastatic melanoma. Within weeks I rose from my wheelchair, and a few weeks later I stored the cane in my closet.

The PET scan that followed showed almost NOTHING left. We decided that I should take a break from medications since I have read that the body eventually builds resistance to it. Then I was switched to a different combination of medicines, which after two infusions caused medicine-induced hepatitis. I had to take a break.

Unfortunately, my next PET scan showed more progression of the cancer. My oncologist decided that the only option left was to attempt yet another combination chemotherapy, but it was unsuccessful in stopping the progression.

The only thing my fiancé and I could think of as a final attempt to save my life was getting another immunotherapy infusion because it had previously put the cancer into remission. We were right – it irradicated everything. Or so we thought. Radiologists missed three large tumors in my small intestines that ended up completely blocking any food passage. The general surgeon told me to go home and enjoy the time I had left while receiving hospice care.

Thankfully, my wonderful oncologist did not agree. She interviewed a surgical oncologist who came in with a smile and saved my life by performing a 30-minute surgery. These doctors and surgeons are such great people! Although the surgery was invasive, and I had an extremely painful recovery, after a month I was simply fine.

A short time after, it became difficult to move my elbow and it was painful to play guitar. Another scan showed a bone metastasis on the right radial head; I was then given three radiation sessions. This took all the pain away. Though the metastasis still shows on my most recent scan (4/9/2021), it has not grown since October 2020 and nothing else shows. I call the scan clean; others will call it stable disease.

Without my fiancé, I would have died many times. Without my phenomenal doctors and surgeons, I would have died many times. I thank God for all the medication that is available as well. I hope that sharing my story will give hope and motivation to other melanoma patients.

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A musician who plays classical, acoustic, and electric guitar, Ryan Cumberland grew up in Harford County, Maryland, and was studying at Hartford Community College with plans to become a lawyer until his health took precedence. He enjoys being outdoors and has immense gratitude to be able to be active in any way. Ryan is happy to share information about his journey with fellow melanoma patients, please reply to this post to continue the discussion.

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Ryan has given us consent to share his story.

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Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions and wellbeing needs, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email communications@healthunlocked.com to learn more.

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12 Replies

Thanks for sharing so inspirational and gives us all hope to continue to strive to find the right approach to help our bodies heal with the right medical/integrative team to help us

Thank you for sharing that story Saskia it just shows how lucky we are when we look around at other people battling to live and never giving up. Clive X 🤗

Ryan, with his girlfriend's help, has shown us what sheer guts and determination can do to empower us to fight for a quality of life. A wonderful and inspiring story!

focused1 profile image
focused1

What a beautiful story . People need people and there were a lot of those on HU which closed because of petty feud so we all suffered . I feel it should be reopened as there were regulars that clearly needed that support . They posted daily and I think it helped with anxiety and worry . I miss the site . It supported me and I feel I supported others . If this wasn't something in cyber space then I feel collectively we could have sorted things out and moved on . I don't use health unlocked as much now as I tire of posting my weight and repeating my news whereas the HU site was more diverse and varied .

twooldcrows profile image
twooldcrows

wow you have been thru a lot and have come out of the other end with such a strong and loving spirit for your self and lovely partner ...stay strong for both of you ...god bless all of the spirits that are helping you thru this journey ...wow such a great group of doctors that really helped you thru all of this ...very proud of you strong spirits ...go on and enjoy your wonderful life ....loads of love and much happiness...i don't know much about the disease but you showed it that it won't stop you ..that is how i fight the MS that is in me ...go with many prayers to help you and much laughter and smiles to help for that i feel is some great medicine to help with this journey ....love ...

jillydabrat profile image
jillydabrat

What an amazing story and an equally amazing young man. I hope his story helps others to fight. Thank you Ryan xx

Pablo0517 profile image
Pablo0517

Hi! I’m Robyn 63years young and while I’ve not had problems like Saskia described I’ve undergone a Craniotomy for 2xcerebral aneurysms plus a third one clipped off earlier this year and four more are under surveillance. While nothing as bad as Ryan has endured it enlightens me to know there is a light at the end of the tunnel.

I take my hat off to Ryan for enduring what he has with such grace and acceptance. I only hope I can. 😄🙏😘

Nathalie99 profile image
Nathalie99

Thank you for sharing this very touching story, Saskia.

It is very emotional.

Ryan,

You have so much courage and determination, that is so inspirational and gives others hope. You have an amazing fiance that is very strong. It makes a huge difference. You are such a lovely couple...

Ryan2 profile image
Ryan2

Hello everyone, thank you for reading my story! I am glad it passes on positivity and motivation. Thank you for sharing it Saskia. I wanted to add the recent change of the metastasis in my right radial....in 5 days I will have a large portion of my radial bone removed. The tumor began to grow quickly and out of nowhere. The pattern has continued...after the blessing of making it to another vacation, I need surgery or a change of treatment within weeks after. Currently I cannot twist my right hand at all and the pain is immense. My team of doctors believe that the radical resection of the right radial bone is the best option. They predict I will regain all of my range of motion, the metastases will be completely removed and I should be able to play guitar again within a month or two. If a conversation with me or my fiancé could ever help I urge you to message me! I wish you all the best of luck and finding the happiness that you seek.

-Ryan

Nathalie99 profile image
Nathalie99 in reply toRyan2

I am so sorry to hear about your operation, Ryan. It is promising that you will regain all of your range of motion. I find it inspiring how you share things and your light shines through.

I had tears in my eyes reading your story.

Wishing you a good recovery and I hope you will be playing guitar soon...

DJK99 profile image
DJK99

Wow. Just an incredibly amazing and hopeful story. Thanks to Ryan for sharing. I'm lost for words for once. Love to Ryan and his loved ones. Keep on keeping on... so much strength and courage. The power of love to keep him going.. and some utterly excellent clinicians!

wolfmom21fl profile image
wolfmom21fl

Omgoodness! this story took my breath away! My son died in May 2019 from this disease. The metastatic disease had spread to his brain, lungs, stomach, chest wall and intestines. No one knew he was sick. He didn't know he was sick until he fell out one day with :The worst headache of his entire life" and when I saw his face I knew instantly that something was horribly wrong. The ER doctors sent him home with headache meds even tho he was walking into walls, did not know who the President was, had no idea what year it even was and they refused to do even a CT scan. 48 hours later we were back at the ER and this time he was started having seizures and they finally did that scan. It showed numerous tumors in his brain and they were hemorrhaging. The neuro surgeon said the only way to save him was to remove part of his skull to relieve the pressure on his brain. Yes!!! Of course! Radiation later on helped to stop the bleeding and shrink the tumors but after biopsy of the tumor in his lung showed melanoma they had to decide if he was a candidate for immunotherapy or something else.. in the end he died exactly 8 weeks to the day from when he was admitted and a part of it was due to the doctors negligence, them making him wait so long for treatment of any kind, removal of meds that were keeping the swelling in his brain down among other things.. i think he just gave up at some point.. they refused to start treatment with immuno thereapy because "they never did this inpatient before" .. it took us 5 weeks to get that started and by then it had spread even further.. This is the type of story you are happy to read tho.. one of survival and triumph.. god bless you

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