Hope to be helpful: If you’ve not read... - Young Adults with...

Young Adults with Melanoma

435 members127 posts

Hope to be helpful

Ryan2 profile image
6 Replies

If you’ve not read my old post with details I’ll summarize. I’ve had melanoma for 9 years, stage 1 boosted to stage 3 practically immediately and was excised along with my right ear. Entered a trial treatment which has since been approved, Ipilimumab. For a few years after I continued my foolish behavior like nothing happened. 2018, my melanoma had evolved to stage 4 metastatic and we had no idea. In august of that year a tumor in my brain decided to explode...luckily I live close to Johns Hopkins, and my life was saved. Months later it ran down my spine, legs, lungs etc. Wheelchair after a cane in weeks. I had a month or two. Tafinlar and Mekinist cleared it just as fast as it hit me. Clean scan. The next will be my experience since then, for some reason I felt the need to post something today.

My name is Ryan, I’ve had melanoma since I was 21. I am 30, and I’ve now had 10 surgeries. After the post above, I had a few months to recover and enjoyed that time as best as I could. Shortly after my recovery, cancer infested my stomach area, and a large resident in my lung. Since taf/mek stopped functioning we tried a duo of immunotherapy, and my body denied it. Keytruda was tried once (one infusion) before it took over my body before, and oncology assumed it didn’t work, so we went straight to chemotherapy. The only thing chemotherapy did was take my head hair and my priceless beard, not a single thing more. At that time, the idea was that I was a goner. My lovely girlfriend looks things up, studies oncology and my test results like a professor....and she demanded keytruda. Her nickname is Keytruda now, because it saved me again. All things shrunk or disappeared in 3 months, or so said the radiologist. My health....improved in a way. I was able to finally reduce and eventually remove the dexamethasone that wrecked my skin and added 60 pounds. Blood clot popped up somewhere in that time period and I had to inject medicine into my thigh every night but I’d trade that any day, and people with diabetes have it much worse. For almost 8 months I had intense stomach pain, even on narcotic pain medicine for around a year. We assumed it was a standard opioid effect, constipation. A clean scan shows that it’s not cancer, does it not? Today is the last day of August 2020. Early this month I could no longer take the pain (or eat), even after I quintupled the amount of pain medication (don’t do that) as tears fell, nothing withdrew so I went to the ER. They didn’t realize the seriousness of ME complaining of pain and ignored me, so I banged my head against the wall to relocate the pain. Shortly after, they moved me to the oncology unit, my timeshare. After a lovely brain swab for COVID-19 and 5 attempts to shove a tube down my nose into my stomach, I had a few new scans with a large team of doctors reading them. There were 3 tumors in my small intestines, one completely blocking and two others stacked on each other almost blocking as well. Oh, and a large artery was a full blood clot. I probably shouldn’t have denied taking blood clot medication, sometimes lessons are hard but that’s another story.

Well that explains why a 30 year old man with no other medical issues needed consistent blood transfusions and iron infusions huh? It also shows that the doctor who put a camera through my mouth and the opposite hole is blind but that’s not why I’m here. The general surgeon basically said there’s nothing he can do about it...hospice. My oncologist and my palliative care doctor are some of the best people in my life. Oncology denied my death an innumerable amount of times, and did so again. The doctor found a surgeon, and interviewed him (doesn’t that sound funny?) but he accepted and she accepted. A man with low red blood cells, low iron, thinned blood, cancer, a major artery blood clot, pain medicine and no food on their chart is rarely able to have surgery, but he came in the room and calmly said I will not go to hospice. He will either remove all three, or bypass them so I have more time. Shortly after I accepted the surgery, he fit me into a busy day and 40 minutes later sowed shut a cancer free body with clean margins and clean lymph nodes. ~14 inches short of small intestines but I live comfortably today, less than a month later. Keytruda began again today.

A few positive things about that 9 day hospital stay:

1. I shed every single dexamethasone pound comfortably

2. My girlfriend was able to be by my side each day, even though others were prohibited because of COVID. Having a nurse clean you is painful mentally.

3. I am still here, better than I have been in years even though there is an incision down my stomach (they saved my bellybutton 😎) that feels like it’s on fire and I can’t do certain things.

I’m not sure how many times I’ll walk by deaths door but I demand purpose for such luck and love. I’ve written a letter to the governor about people with cancer...but that’s just a letter and may run by his eyes. I hope that somebody can read this and reach out. If any of the doctors interest you, I will give you their names. The doctor who did my stomach surgery is about the only solution to pancreatic cancer. I hope you all are doing well, feel free to ask any questions, even if they aren’t related to cancer or pain medicine.

-Ryan

Written by
Ryan2 profile image
Ryan2
To view profiles and participate in discussions please or .
Read more about...
6 Replies
strawberryjam profile image
strawberryjam

Ryan, I have been following your

story for several

years, mostly through Kelly’s

posts. You are an inspiration and a strong man. As you know, you have a powerful advocate by your side. My son, who is your age, has been in this battle for five years. Believe

me, if we ever need help getting the right care, I’m gonna be calling on you and Kelly and your medical team for

advice. I am so happy that they successfully did that surgery. You have both moved mountains again and again! Keep it up!

Ryan2 profile image
Ryan2 in reply tostrawberryjam

Yes, she has mentioned you two many times. I’m glad that there is something positive through it all. I appreciate you saying that, but I could always do much better. Sometimes it is hard to maintain strength when the bad time outweighs the good, and I don’t know what I’d do without her. I’m very glad that we can be here for you guys, anything that we could do to help 😄

kellyOd profile image
kellyOd

You amaze me everyday. My love for you is infinite ❤️ There is only one God and his name is Death. And there is only one thing we say to Death - ‘not today’

Ryan2 profile image
Ryan2 in reply tokellyOd

She doesn’t mean that. I don’t amaze her. Just kidding she doesn’t mean god is death, it’s a Game of Thrones quote and I didn’t remember it either. I like burn notice better.

missyrand profile image
missyrand

Ryan, thank you to you and Kelly for allowing the melanoma caregivers community of HealthUnlocked to be a part of your journey. This post is quite the exemplar of “listen to your body” and keep voicing your experience.

Melanoma is so wiley. Especially for young adults. You are courageous and I’m glad you’re still here.

Peace,

Missy

Ryan2 profile image
Ryan2 in reply tomissyrand

Thank you for supporting us, helping Kelly and sharing your experience. I know you helped so much with her large pocket of other treatment options. Melanoma is quite strange, it has appeared everywhere and moved quickly. I am lucky to be able to share. I hope you’re doing well.

Not what you're looking for?

You may also like...

My Experience With Melanoma

Obviously, my name is Ryan. I am 28 years old. I currently have stage 4 melanoma. I will share my...
Ryan2 profile image

Genetic Testing?

I have my first followup skin exam next Thursday, April 5th. My oncologist also wants me to do...
katematta profile image

New here!

Hi my name is Megan and I was diagnosed with melanoma in July 2016. I'm a mom of a wild toddler and...
BlondieMeg profile image

Trying to find out what to expect?

Hello, I’m 31 and a little over a week ago I received a call that a biopsy taken from my right leg...
AmNic17 profile image

Melanoma stage 3C

Hello everyone! Just want to introduce myself. I’m 23 years old and I was diagnosed with stage 3C...

Moderation team

CassieMRF profile image
CassieMRFPartner
AdamMRF profile image
AdamMRFPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.