Dwright

I had four injections that surrounded my tumor on my back/shoulder blade. I think that part of the body isn’t as sensitive (nerve ending wise), so I found it momentarily uncomfortable (kind of like getting a big shot, or a bee sting), but the pain was gone within 5 seconds. Very best of luck, and just keep telling yourself, “this too shall pass”, and it will eventually.

-Derek

Wow, we must be on the same management path. I was also diagnosed in June with my WLE (1a), and yesterday went for my first quarterly check up with melanoma specialist, and had a small problematic mole removed from my left thigh via punch biopsy. I was told to keep it covered for 48 hours, then start daily wound care. Anyway, I don’t have an answer to your question, but look forward to hearing from others who have experience with this.

You are doing the right thing by getting it checked on by a dermatologist. As many others have said here, if you are concerned about it, advocate for a biopsy.

My melanoma was flesh/rose colored, and because of this I wasn’t as concerned as I should have been for over a year, and it spread (luckily only on the surface, and not too deep). Look up the term “amelanotic melanoma”, which means a melanoma tumor without the melanin pigmentation. Melanoma is a cancer that arises from the melanocyte of our skin. Tumors aren’t always darkened or discolored to the point where they are noticed easily. Mine was raised above the surface, irregularly shaped, and started to itch. That’s why I went to the derm and asked for it to be checked. The derm thought it was likely just a seborrheic keratosis (a non-cancerous growth), but we decided to biopsy just to make certain….

It’s far better to go get things checked out. You’re doing the right thing. Hope you are able to get into a specialist soon.

I feel funny being the first to chime in here, as I’m also a newbie with this diagnosis (just diagnosed in early June, and still in the throes of figuring out how to live and adapt to the threat of future melanoma growths), and I’m sure there are people no here who will be in a better position to reassure and share their lived experiences and how they have evolved over time to not live in fear and desperation. Like you, I had a melanoma removed from my back, and like you, am at an early stage (i’m stage 1b). What made me hone in on your message was your description of lots of moles all over your body, and the feeling that my skin is a minefield just waiting to go off, because I’m in the same boat. It’s easy to fixate on all of these innumerable moles, because they are hard to ignore, staring at us at every waking moment. As you go and start working with your melanoma specialist, you’ll probably want to ask about the condition “atypical nevus syndrome”, which is basically a condition that some of us have (including myself) where the body produces many atypically shaped dark/colored moles. Like you, I’m really new to the idea of this as an actual condition, though I’ve known my whole life I was “moley”. From what I have learned so far, and what I have talked about with my dermatologist is that in this syndrome, statistically, the vast majority of your moles are likely going to be benign. But because you have many of them, you’ll need to have full body checks on a regular basis, so you can measure which ones aren’t changing and which ones are. I understand that doing full body mapping (via photography) is usually a good idea for people with this (something that I’ll begin doing in September with my melanoma specialist). And can be a great tool to refer to over the years to compare and contrast skin changes.

One thing that helped me a lot on this forum was honing in on some of the people here who seem to be highly informed and are in similar situations. I quickly found from reading lots of passages that there’s a member here who posts under the name “janner” who has been active on this forum for many years and she seems to know a great deal about atypical nevus syndrome, and has lived with early staged melanomas for a few decades now. You can go to member’s profile and search for posts that they have commented on over the years. Reading these passages and leaning on their lived experiences has helped me a great deal process the grief and despair that comes with the shock of this diagnosis. There’s a ton of wisdom on this forum, and it’s been around for years and years, and the archives are relatively easy to use.

As far as wearing shorts, outside activities, and where to live, those are all topics that are legit and deserve lots of contemplation. From what I’ve read, I think it’s pretty normal for people at first to experience a heavy dose of anxiety (I’m in that boat as well), which feels like paralysis. But, as you will come to see on this forum and via other forums, many people living with melanoma maintain highly active lives outside and in. Some people opt to be covered head to toe with sun protecting fabrics when the sun is up. Others continue to wear the clothing they prefer to wear and rely on frequent applications of good sunscreen throughout the day (SPF 30 and higher), and face the daylight with confidence. I’m finding myself some somewhere in between at the moment: I prefer to wear long sleeves and pants on the weekends while I’m out and about in hot and humid NYC, because I like the idea of blocking the sun from my skin, but during the work week I just wear my normal clothes (including cotton shirts), and rely on sunscreen applications to face, hands, and arms, and trunk while I’m at work. I did spend a week at the beach in SoCal in July pretty covered up (rash guard, sun hat, neck guard), and only swam and boogie boarded after 5 pm, which felt limiting, but still felt great to be out in the salt water at all. And I’m an active endurance runner/marathoner and used to wearing typical running clothes during long runs, which has been a bitter pill to swallow for me, and has made me only run in the pre-sunrise hours, or after the sunsets at the moment.

Take courage, and know you’re not alone, and that while this is not a fun club to belong to, it’s not a condition that has to drive you indoors and make you a vampire. You’ll have a good team at the VA to help you along the way. I would advocate for being seen every 3 months for the next 2 years (that’s what all of my doctors have said, and I think that’s pretty standard practice for recently diagnosed melanoma). Others on this site might say that getting in touch with an oncologist is a good idea for your stage, whereas others will say that it’s not needed. Since I’ll be working with a melanoma specialist and seeing my regular dermatologist on a regular basis, and since there was no evidence of further disease beyond the tumor on my back that was excised, I am not pursuing oncology visits at this time. But that is a decision you’ll need to come to on your own and with the guidance of your providers.

Hope what I’ve typed here is of some comfort. All the best,

Derek

If there is a recreational diet order in place (like what you have described, a few simple items for pleasure/quality of life), then I would push to get clearance by the SLP and MD for the meds to be taken orally, maybe with a sip of nectar thickened liquids. Very best of luck to you!!!

If there is a recreational diet order in place (like what you have described, a few simple items for pleasure/quality of life), then I would push to get clearance by the SLP and MD for the meds to be taken orally, maybe with a sip of nectar thickened liquids. Very best of luck to you!!!

What I meant to say is I won’t begin to make assumptions IN YOUR PERSONAL CASE as to why a tube has been placed, and the severity of your condition with the upper or lower alimentation tract. If you read that another way, it makes it sound like that would be the approach I would take with all of my patients, and that would make me a terrible clinician. Sorry for posting too quickly without editing. : )

Hi Donna,

Sorry you are dealing with this added barrier into already trying to fight melanoma. I’m a Speech-Language Pathologist (SLP) and work on a daily basis with patients who have tube feedings for a wide variety of reasons (almost exclusively due to complications with their ability to adequate protect their airway when they swallow foods and liquids). There are occasionally rare cases where a patient who cannot take anything by mouth (food, liquids, medications), that the doctors will beg us to accelerate our recommendations to allow for medications to be taken orally, usually because a certain medication may only come in solid form and cannot be manipulated (crushed, liquified, etc.). At that point, we’ll usually revisit or perform new diagnostic imaging swallowing tests specifically for the purpose of testing the feasibility of administering the medications whole by mouth. I won’t begin to make any assumptions as to why a tube has been placed, and the severity of the condition with the upper or lower alimentation (swallowing/digestive) tract. But I do know there have been times when we have needed to keep patients NPO (no foods or liquids by mouth), but we will make the exception under the most strict of circumstances with very strict instructions for safety to provide medications orally. Maybe you’ve already explored this possibility, but just in case you haven’t, I wanted to highlight that this does and can happen.

All the best,
Derek