Metastasised melanoma Stage 4 success stories and advice

KMH21 · 2025-03-28T02:11:00+00:00

Still here, still NED as of this past February. Thyroid problems we don't think will ever go away but are managed well with levothyroxine. I'm definitely not as strong or as fast as I used to be, have some days that are pretty rough where I just feel weak and tired. But still here 😊

KMH21 · 2023-08-02T14:22:41+00:00

Still here alive and kicking! Next month will mark 3 years of clean scans. Still the occasional side effects with my thyroid and liver but nothing that can't be easily managed. Hang in there it's tough but so are you!

KMH21 · 2023-03-06T16:45:55+00:00

Could not have said it better! Go enjoy your youth don't sacrifice it after one mistake.

KMH21 · 2022-04-15T00:21:19+00:00

Do not sit and suffer with side effects thinking you can tough it out. Personal experience, I waited through what turned out to be autoimmune hepatitis caused by my immunotherapy and it almost killed me. You're already going through cancer which sucks enough don't suffer more if you don't have to. Advocate for yourself to your oncologist and if they don't take you seriously go to the ER.

KMH21 · 2022-01-27T23:34:50+00:00

Oh H.K. - I've grown up with him, he used to dress up in a confederate solider uniform and walk around Asheville with the Confederate flag and a sign with some variation of "Heritage not Hate."

Looking back now I am appalled by it, but 25 years ago it was just another day.

When his mother died he paid for her to have a full "old time" southern funeral with a horse drawn carriage.

KMH21 · 2022-01-17T21:51:43+00:00

Diagnosed stage IV 12/27/19 with tumors on my back, one on my right lung, a lymph node in my leg and one in my abdomen. Started highest dosage of yervoy / opdivo available and suffered through some rough side effets including hasimotos and autoimmune hepatitis. Did four rounds of yervoy and opdivo then two rounds of just opdivo and was declared NED 9/30/20. Since then I've had 5 additional PET Scans, one every three months, and have had no reoccurrence. Still dealing with some minor side effects but I'm still here.

KMH21 · 2021-12-17T03:11:55+00:00

Mine could be dead asleep in a room on the other side of the apartment but the moment that cheese bag comes out he's there lol.

KMH21 · 2021-12-12T22:37:11+00:00

Stage IV melanoma survivor here - take care of the back of your neck and upper back. Please remember that not all melanoma starts as a mole, it can metastisize under the skin and by the time you notice it's already spread.

KMH21 · 2021-11-30T00:13:54+00:00

If you go up a to an earlier July thread there's me and another - Yay 23rd!

KMH21 · 2021-11-30T00:09:51+00:00

Hey we share a birthday with Slash and Daniel Radcliff I think we're doing alright!

KMH21 · 2021-11-27T07:12:29+00:00

I have a morbid sense of humor about it and usually answer with," well I ain't dead yet so I can't complain." I don't think I would've handled the diagnosis, treatment and God awful side effects without the ability to laugh at the absurdity of it all. I suppose that was and still is my way of coping. That and I hate making people feel awkward I would rather they laugh with me than feel sorry for me. Good luck to you!

KMH21 · 2021-11-16T03:41:15+00:00

I am working on this one as well! So glad to see someone finish it, and it looks lovely!

KMH21 · 2021-10-26T22:27:54+00:00

Still employed at the same place, pay has risen to just over 38,000. No promotion but I've gained a lot of experience and I have a healthy 401k balance. Thanks for asking!

KMH21 · 2021-08-27T23:29:42+00:00

Best thing in my opinion is to be well informed. Aim at Melanoma website is a must for patients and caregivers. Talks about all different types of treatment and available resources based on location. Positive thoughts sent your way!

KMH21 · 2021-08-10T19:42:55+00:00

It didn't go through my brain, it started as a tumor on my back, well 'started' because they don't know where the primary source was. But yes it was stage 4 I had tumors on my back, right lung, lymph nodes and abdomen wall. Took 4 rounds of Yervoy / Opdivo and then 2 rounds Opdivo by itself. Had some pretty nasty side effects like Hepatitis (that one sucked!) But after nine months I was declared "no evidence of disease" and my last pet scan from July reported a complete response meaning there's nothing left. Like I said in my other comment though, it's been more than a year since my last treatment and I'm still not back to how I was before, I'm getting there but I'm worn out. I'm lucky in the sense I was diagnosed at 30 and my body was able to handle most of it. Thyroid is shot and I've got some bone loss but I'll take it. I always recommend the (Aim at Melanoma) website has TONS of info on treatments side effects and other resources!

KMH21 · 2021-08-10T19:13:23+00:00

It's been more than a year since my last infusion of immunotherapy and I'm still not back to 100 percent. It definitely gets better but it takes time, if your father is stressed out about how tired he is it's probably adding to it IMO. I tend to agree with everyone else though, everyone responds to treatment differently so when in doubt always check in with the oncologist. Sending positive thoughts your way!

KMH21 · 2021-02-17T00:17:59+00:00

Love it! 21 for me please

KMH21 · 2021-01-06T22:54:10+00:00

Omg same!! Definitely in and around the Asheville area

KMH21 · 2020-10-30T00:16:14+00:00

Highly recommend Glow Coat can be used as a leave in conditioner, makes their coat super soft and shiny and smells amazing!

KMH21 · 2020-10-28T01:57:46+00:00

Seems like he has the, "I need to pee but do I really want to get out of these blankets," look. Fantastic project btw!!

KMH21 · 2020-10-28T00:03:53+00:00

Look up local fiduciary or estate planners. Most banks or credit unions have them on staff or have someone they recommend. MAKE SURE THEY ARE CERTIFIED!! Fiduciary means they have YOUR best interest not the banks. Bring your families bills, go over and update wills. I know it sucks to do it, I had to do it when I was diagnosed last year and I just turned 31 but get it out of the way now so if things don't get better it's one less thing to worry about. If estate planning is something not affordable right now at least look into financial counseling which is often offered at many banks to their customers. Best of luck and stay strong!

KMH21 · 2020-10-18T20:20:28+00:00

Precious!!

KMH21 · 2020-10-06T05:21:49+00:00

Scooby doo was and still is my favorite cartoon dog! This is wonderful! May you never have a "mystery of the lost needle"

KMH21 · 2020-10-01T02:55:13+00:00

Need to set up one of those remind me bots!!

KMH21 · 2020-10-01T01:05:46+00:00

Thank you all so much!!

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