Melanoma treatment options

Posted by birdman518 @birdman518, Jun 24, 2021

I just had my ill-tempered melanoma removed last Friday at Moffitt in Tampa. I had two SLN taken out around my left ear, as well as a skin graft taken from my thigh.
I will be meeting with my surgeon next week to discuss the LN biopsies. In the meantime I have been reading a lot of books (like "Rebel Cell" which I recommend) and articles and (watching) videos.
FWIW I typically only use known, reliable sites like Mayo, Moffitt, AIM At Melanoma, CureMelanoma, etc.

If I am found to have either stage 3 or 4 melanoma, I presume that the team will refer me to an oncologist to discuss treatment. I have been reading a lot about drugs like Opdivo, Keytruda and Yervoy. I think I *get* the idea behind immunotherapy (IMTH), and realize that it may be the current best option.

I cannot deny that the side effects are daunting, and it is still unclear to me that these treatments really extend life much, with some exceptions.
See e.g. here: https://www.webmd.com/melanoma-skin-cancer/melanoma-treatment-side-effects

Here are some questions:

1. What happens if I decline immunotherapy and simply get quarterly checkups?
(other than dying of cancer eventually)? Will my next N years have a better
quality of life, or not? Some side-effects that are mentioned (like onset of
diabetes) seem pretty bad.
2. I believe I understand that PET or CT scans are typically used to try and
determine if the IMTH is working. Is that true? Would that be the next
step after being declared stage 3? Are subsequent scans like those used
as the "proof" that the IMTH is working? If not how is melanoma "detectable"
after it has been excised from where it was first found?

I want to have a positive mental attitude, but doesn't anyone else ask: is it worth it?

Interested in more discussions like this? Go to the Cancer Support Group.

My orthopedic dr congratulated me on my patience with my ligaments. If he wouldn’t have known how I dealt with a knee earlier, I doubt he would of suggested trying to heal the ligaments. You had multiple injuries and I had melanoma, patience wouldn’t of helped . After hearing yours and a few others experience with stitches I’m feeling pretty good. I guess the shock of the appearance (still gross but on a smaller scale) and the lack of communication had me pretty shook up. I started feeling a little better last week and now I know what to do in the home stretch. I loved your kitty story . I have a small dog that gets annoyed with my constant moving around trying to get comfortable.

REPLY
@jenniferhunter

@barbjo I can understand how you are in some uncharted territory wondering what your skin will look like after the surgical site has healed. Your surgeon probably made a better choice, not doing stitches if she thought it would pull when you walked. That would be painful and would yank on a wound that is trying to heal. The experience I can relate to you is from breaking my ankle badly that resulted in 3 surgeries. The first placed a large metal cage outside of my ankle and it was screwed directly into the shin and heel bones to stabilize it. That allowed the swelling to subside a bit before surgery to fix the ankle in place with surgical hardware in the 2nd surgery. The 3rd surgery was to remove the hardware because it bothered me.

During the time after the 2nd surgery, I was in a cast with stitches on both sides of my ankle with about a 4 inch incision on one side and the other was less than an inch. Even though I wasn't walking or weight bearing, the stitches would catch in the gauze wrap inside the cast and pull on them which hurt. I was miserable, but had to endure that for 6 weeks. The wounds from the external cage were open deep pits and had some necrotic tissue that was later debrided in the 2nd surgery, and the larger one formed a scab and multiple layers of skin under it. The scab didn't fall off until a couple months after the cast was removed, and then it continued forming scabs and shedding layers for several months. It started as a very raised bump than was reddish. The top layers would start looking white as they separated from the stack and would rub off. It really took about 9 months until the scar and the rest of the area leveled out. Healing on the lower leg also takes a lot longer than on the rest of the body.

My husband also had melanoma removed from the side of his hand on the pinky finger side, and his was stage 2a that had broken through the skin from underneath. It was the size of an eraser on a pencil, and looked like that too because it was the same color. They took a wide excision around it, and that required a skin graft sutured in place from a plastic surgeon during the procedure. The skin graft came from the groin area, and it was red during healing and was a bit infected, and antibiotics cured that. Because all the skin and underlying tissues were removed down to the muscle and bone, the end result is that it is a sunken area on his hand of lighter colored skin graft. The "seam" at the edges are a bit raised and painful because of nerve damage from what was removed and he has numbness in part of his hand and half of the pinky finger.

One other thing I would mention is that during healing and for the first year, if you protect the wound/scar from sun exposure completely, the scar will be lighter in color. I am also a spine surgery patient with a scar on the front of my neck that was placed in a neck fold to disguise it. It is lighter than my skin and tightly closed and people never see it. I wore a neck bandana all the time if I was outside that first year. If a healing scar gets sun exposure, it forms more pigmentation and results in a darker colored scar that is usually darker than the skin around it. Protecting it from sun exposure prevents this from happening.

Jump to this post

I just had skin cancer removed from my face. Stitches will be out in a few days but your comment on sun exposure raised a question. Is sunscreen of 50 SPF sufficient to minimize the potential for the scar to be darker - or should I cover it with some sort of bandage? And how long?
Not sure even wide brimmed hats will completely cover it.

REPLY
@mlenney167

I just had skin cancer removed from my face. Stitches will be out in a few days but your comment on sun exposure raised a question. Is sunscreen of 50 SPF sufficient to minimize the potential for the scar to be darker - or should I cover it with some sort of bandage? And how long?
Not sure even wide brimmed hats will completely cover it.

Jump to this post

Hi Annie
Did you get your stitches out? I still have a ways to go before I’m done with a dressing. Just curious, besides sunscreen are you planning on using scar cream? I would like to have suggestions about that.
Take care
Barb

REPLY
@mlenney167

I just had skin cancer removed from my face. Stitches will be out in a few days but your comment on sun exposure raised a question. Is sunscreen of 50 SPF sufficient to minimize the potential for the scar to be darker - or should I cover it with some sort of bandage? And how long?
Not sure even wide brimmed hats will completely cover it.

Jump to this post

@mlenney167 Annie, I'm sure SPF 50 sunscreen will help, but there are so many other variables like how much sun exposure are you getting? or how liberally is it applied? or are you sweating or swimming where it can be washing away? A little round spot bandage can cover it, but sometimes those fall off and probably won't stay on if you use sunscreen. Kudos to you for asking these questions so we can all think about sun protection for cancer prevention.

Here is a Mayo Podcast about sunscreen protection.
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/sunscreen/
I rely on wide brimmed hats like a garden hat that I tie on so the wind won't take it. I go horseback riding outside, and since wearing a riding helmet prevents me from wearing a hat, I cut a brim off a stiff garden hat and made a brim to attach to my riding helmet. (see photo)

I also use a gaiter sometimes and I found some made by Buff that are lightweight and easy to wear with many interesting designs. They even have some with vintage designs for the National Parks. Some have more sun protection than others. I also have some sun protecting gloves that leave the fingertips exposed, and sun protecting clothing (shirts and pants) with fabrics called PFG "professional fishing gear" from Columbia. I get the long sleeve shirts. They are lightweight and vented under the back yolk so they are loose and very comfortable in warm weather (also in the photo). Don't forget sunglasses to block UV rays because you can get melanoma in the eye.

Here is the website for BUFF neck wear. I wear these to protect my neck and chest (because shade from a hat usually doesn't cover that), and it's there any time I need to pull it up onto my face to cover what isn't in shade from a hat. You can wear it may different ways.
https://www.buffusa.com/
Now that wearing masks has become mainstream, that would be another way to help protect from sun exposure on your face if you need it.

In my experience, it takes about a year until a scar fades to white, so during that time of transition if you protect from sun exposure, the scar doesn't form as much pigment. Limiting time outside helps too, and remember that UV is reflected off surfaces like concrete or sand, and reflective surfaces like water so it can bounce up and expose your face that is in the shade of a hat.

My husband (who had melanoma removed from his hand) does all of this and puts on a hat, long sleeve shirt, and a face gaiter with long pants to go for a walk around the block. He has to be vigilant with skin checks, and I'm sure you are doing that too. I'm glad you did get checked and found the melanoma and got it treated because it is easy to miss it, then you remain vigilant forever with regular screening.

Personally, I don't like the goo of putting on sunscreen and it discolors clothing, and I prefer to just cover up outside. I don't spend my whole day outside either. I burn so easily, and I have stayed out of the sun most of my life, except for a few outside activities. Is there something here that appeals to you to try?

REPLY
@jenniferhunter

@mlenney167 Annie, I'm sure SPF 50 sunscreen will help, but there are so many other variables like how much sun exposure are you getting? or how liberally is it applied? or are you sweating or swimming where it can be washing away? A little round spot bandage can cover it, but sometimes those fall off and probably won't stay on if you use sunscreen. Kudos to you for asking these questions so we can all think about sun protection for cancer prevention.

Here is a Mayo Podcast about sunscreen protection.
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/sunscreen/
I rely on wide brimmed hats like a garden hat that I tie on so the wind won't take it. I go horseback riding outside, and since wearing a riding helmet prevents me from wearing a hat, I cut a brim off a stiff garden hat and made a brim to attach to my riding helmet. (see photo)

I also use a gaiter sometimes and I found some made by Buff that are lightweight and easy to wear with many interesting designs. They even have some with vintage designs for the National Parks. Some have more sun protection than others. I also have some sun protecting gloves that leave the fingertips exposed, and sun protecting clothing (shirts and pants) with fabrics called PFG "professional fishing gear" from Columbia. I get the long sleeve shirts. They are lightweight and vented under the back yolk so they are loose and very comfortable in warm weather (also in the photo). Don't forget sunglasses to block UV rays because you can get melanoma in the eye.

Here is the website for BUFF neck wear. I wear these to protect my neck and chest (because shade from a hat usually doesn't cover that), and it's there any time I need to pull it up onto my face to cover what isn't in shade from a hat. You can wear it may different ways.
https://www.buffusa.com/
Now that wearing masks has become mainstream, that would be another way to help protect from sun exposure on your face if you need it.

In my experience, it takes about a year until a scar fades to white, so during that time of transition if you protect from sun exposure, the scar doesn't form as much pigment. Limiting time outside helps too, and remember that UV is reflected off surfaces like concrete or sand, and reflective surfaces like water so it can bounce up and expose your face that is in the shade of a hat.

My husband (who had melanoma removed from his hand) does all of this and puts on a hat, long sleeve shirt, and a face gaiter with long pants to go for a walk around the block. He has to be vigilant with skin checks, and I'm sure you are doing that too. I'm glad you did get checked and found the melanoma and got it treated because it is easy to miss it, then you remain vigilant forever with regular screening.

Personally, I don't like the goo of putting on sunscreen and it discolors clothing, and I prefer to just cover up outside. I don't spend my whole day outside either. I burn so easily, and I have stayed out of the sun most of my life, except for a few outside activities. Is there something here that appeals to you to try?

Jump to this post

Thanks for all the information! I’m going to order that gaiter from the Buff website. I get the stitches out later today so have several questions on care - as well as when I can resume physical activity. Walking was the only thing they suggested! Golf and kayaking are my 2 passions - already have hats. And clothing with sun protection.
I appreciate all the advice!

REPLY
@barbjo

Hi Annie
Did you get your stitches out? I still have a ways to go before I’m done with a dressing. Just curious, besides sunscreen are you planning on using scar cream? I would like to have suggestions about that.
Take care
Barb

Jump to this post

Hi Barb
I get the stitches out today and will get instructions on how to take care of the incision- to ensure it heals well and to minimize scarring and any return of cancer.
I’ve been using Aquaphor on it and keeping a bandage on it, per their direction.
Will let you know!

REPLY
@mlenney167

Thanks for all the information! I’m going to order that gaiter from the Buff website. I get the stitches out later today so have several questions on care - as well as when I can resume physical activity. Walking was the only thing they suggested! Golf and kayaking are my 2 passions - already have hats. And clothing with sun protection.
I appreciate all the advice!

Jump to this post

@mlenney167 Thanks, Annie. I love kayaking too, but haven't been on the water with mine in a few years, and I need an easier way to get the boats up on the SUV, and haven't purchased a kayak carrier yet. I never have figured out how to whack a golf ball and get it to move more than a foot. I have to stick to miniature golf.. LOL.

Buff also has some wide headbands, so you could pull a gaiter up to just under your eyes, and put a headband on your forehead if you wanted to disappear behind the coverings. I really do like the BUFF stuff and don't mind wearing it. I also have some large scarves like an oversized bandana that I wear to cover my neck and chest because regular bandanas are too small to cover much. You can also wear the gaiter like a head band/scarf that will hold your hair in it, and wear a second one for your neck & face. I have several of them because there are just too many good colorful designs, and then I can have clean ones available for next time.

I was just looking and I ran across this.... same idea but more form fitting to cover face and chest.
https://www.buffusa.com/buff-products/masks/uvx-mask-realtree/wav3-blue-yellow/125700.555
Good luck with your stitches. That will feel good to get those out.
Do you have any good sun protection tips you would like to share?

REPLY
@jenniferhunter

@mlenney167 Thanks, Annie. I love kayaking too, but haven't been on the water with mine in a few years, and I need an easier way to get the boats up on the SUV, and haven't purchased a kayak carrier yet. I never have figured out how to whack a golf ball and get it to move more than a foot. I have to stick to miniature golf.. LOL.

Buff also has some wide headbands, so you could pull a gaiter up to just under your eyes, and put a headband on your forehead if you wanted to disappear behind the coverings. I really do like the BUFF stuff and don't mind wearing it. I also have some large scarves like an oversized bandana that I wear to cover my neck and chest because regular bandanas are too small to cover much. You can also wear the gaiter like a head band/scarf that will hold your hair in it, and wear a second one for your neck & face. I have several of them because there are just too many good colorful designs, and then I can have clean ones available for next time.

I was just looking and I ran across this.... same idea but more form fitting to cover face and chest.
https://www.buffusa.com/buff-products/masks/uvx-mask-realtree/wav3-blue-yellow/125700.555
Good luck with your stitches. That will feel good to get those out.
Do you have any good sun protection tips you would like to share?

Jump to this post

Hi Jennifer
I don’t have any good sun protection tips beyond all the ones we’ve seen shared already. Was told that vitamin B 3 has shown to reduce occurrence of some skin cancers but any sure the experts at Mayo will have more insight on that.

REPLY
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