6 Things You May Not Know About Melanoma

Breaking News

Some of you may remember a time when breaking news meant something intensely serious was happening. When J.F.K. died I was watching some morning show while my Mother ironed (another concept that dates many of us!). I remember it vaguely as I was young; my mother was crying and that felt like breaking news, like something had broken because it had.

Breaking news today, well that’s an occurrence that we no longer pay attention to as it has lost it’s earnestness. Breaking news is everywhere, everyday and no longer has any significant value. That leaves each of us to determine what to watch, what not. Like the friend who is never quite honest, I’ve tired with the uncertainty of the news and the shortage of information, and the lunacy is abundant.

BUT…

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Watch for spots

There are things you may not know about metastatic melanoma, a type of skin cancer, and I feel it is breaking news to inform you with a few short hits on what we know at this point. I save the most interesting for last so keep reading! There are many misconceptions about melanoma, so here’s a basic list of health information:

  1. Melanoma is deadly so be sure to be aware of the abcde’s of melanoma. Do skin checks and be #sunsmart.
  2.  Basal cell and squamous cell carcinoma are considered non-melanoma skin cancers. Read about them here at Web MD. While they are skin cancers, they do not turn into melanoma.
  3. Cancer resources for skin related disease can be found in online resources such as the American Academy of Dermatology Association. The photos may help but don’t let that be your guide. Like the shirt that you bought online that turned out to be a completely different color, your skin cancer may not look like digital photos.Be wise and see a dermatologist in person.
  4.  Depending on the staging, melanoma is not a quick surgical removal. Possibilities include excision, plastic surgery, nuclear dyes (the most painful thing ever) to find lymph node drainage, radiation, and a plethora of scans and tests.
  5. Pay attention to the UV Index – the sun is powerful!

And Here It Is…The REAL Breaking News!

   6. Melanoma does NOT react positively in chemo treatment.

Yeah, that’s the big news. it may be used to relieve symptoms of this aggressive disease, most commonly for Stage IV patients. Cancer treatment is equated to chemotherapy and guess what? That’s not always true! I’ve had people say things like:

  • “Wow! You must be getting a light dose. You haven’t lost your hair”
  • “You look really healthy compared to other people I know who’ve been on chemo”
  • “Why are you fatigued if you’re not receiving chemotherapy?”

My cancer-related fatigue is from a clinical trial that I participate in and I receive the drug Yervoy. The study compares Yervoy to other drugs such as Keytruda used for metastatic melanoma. At this time, there is no cure for melanoma and I hope that in participating in this immunotherapy research, that someday there will be a drug or series of drugs that can reduce the death rate for others, and not be filled with risks and side effects.

Visually, I do look like myself and I believe I will heal. Fatigue is intense at times; not that I need to nap but I feel like the a horse pulling thousand pound weights most days. Aches are challenging me more over time, and I’ve been offered steroids to alleviate the pain. I’m not ready to put more drugs into this soupy/saucy mix but I’m close.

Every day is a great day. I only mention some of the melanoma cancer tips because there are many misconceptions. There’s a lot going on inside some of us though it may not show! I’ve learned to not judge a book by it’s cover in a medical sense now that I have medical turmoil within. Inspiration also comes from within, so look beyond all the cancer craziness, find your courage, and bring that to the surface and let it shine! #melanomatheskin #getnaked #melanoma #cancer #yervoy

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We can-cer vive!

Janis

 

 

Melanoma Marathon

Now Racing Through My Mind…

is the appointments, no longer in the distance but hurdles to be jumped in the next few days. I honestly, don’t see a finish line in my melanoma path, primarily because beating cancer is now a way of life. This isn’t a knee scrape that we put a band aid on and all is good.

Bottom line, I’m alive and I’m in the care of world class doctors at Dana Farber, and I’m monitored on a regular basis.  Do I want to be under such scrutiny? Hell, yes! While I’d love to have no medical anything in life, I have a ginormous medical life. This is what is keeping me alive and that is how I look at it. This IS life now.

Not The Fast Track

My journey involves traveling. Weighing whether my Stage III metastatic melanoma was worthy of out-of-state cancer treatment with the recurrence, it was obvious that was the track we were on. Road trips add another layer of angst but once you get the routine down its okay.

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A folder includes changes in medicines, printed schedules, and other loose paperwork. The notebook of questions, previous notes, and dates, etc. is essential. Identification and the dreaded health insurance cards are put in my “Maggie Bag”… a gift from a friend that keeps the small essentials together. There’s also a cribbage board in there, pens, chapstick, pain relievers, and special beads from the grandkids.

DSC01632All of this goes in the backpack, along with water bottles, snacks, and perhaps some knitting or reading.  I can’t do books on Dana Farber days as my mind wanders but a good magazine is easier on the brain.  Why the backpack? These days are beyond full so we bring what we need and usually don’t have to return to the parking garage until day’s end.  Wear comfortable walking shoes as procedures are not next door! What works for you on big medical days? I’d love to hear your tips! Please comment.

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Having a caregiver, if possible, is very important. Driving, listening to medical professionals, helping to navigate floors, offices, and labs, taking notes, asking questions, and just offering support in a very anxious situation is incredibly helpful.

Start Up: A Marathon with Hurdles

Dermatologists will examine every dot and spot. Included in the day is: blood work, MRI and CT scans, skin cancer oncologists, and the infusion team if all goes well. Beyond grueling as woven in to this time of poking and prodding, is the nugget all cancer patients keep buried in the back of their thoughts…”will the tests come back clean?”.

Health information is exchanged. I let my medical team know of my fatigue challenges, what aches, any new areas in question. In return, I will get preliminary results from all the testing, and perhaps a green light for infusion of Yervoy (imilimumab), one of the drugs in the clinical trial that I started last Fall.

Train For The Hurdles

Like each day, I take the medical days moment by moment. Each appointment is important, and brings me one step closer to the end-of-the-day infusion that may be enhancing my immune system. Train your brain to seek the positive when possible. How you prepare for the next appointment matters.

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Lead into your hurdles with hope and courage; it makes for a strong landing. Life is different for each of us, and we all have our challenges, our hurdles. Take each one as they come, and work toward a solid landing. Like the track and field runner, practice finding balance and positive head space. Where does your inspiration come from? #rootingforyou #cancer #melanomatheskin #melanoma #yippyforipi #inforthewin #Tuesdaythoughts

We can-cer vive!

Janis

 

Creepers and Stalkers and Trolls, Oh My!

troll-1916370_960_720.jpgWriting today is mostly therapeutic and I apologize in advance for my anxious thoughts. You see, I’m on a clinical trial for metastatic melanoma and due up for my next visit at Dana Farber Cancer Institute. I’ve done well to get on with life, take breaks as needed, and think like my pre-cancer self.

Without Exception

Today the thoughts creep in, a bit more than the usual cancer stuff. It’s always there, the c-word stuff, but I believe I’m exceptional! Exceptional at keeping thoughts at bay, exceptional at ignoring thoughts, and exceptionally exceptional at creating an aura of life is good. Other cancer patients can relate to this!

Three months without my melanoma team, free to push myself through fatigue heavy days and achy joint night. Samplings of joy, love, and life finely sift through my new colander of life. Every moment is rich, alive, and mine for the living.

Whither Shall I Wander?

Prisoner in my own mind, my desire to stay in-the-now wanders down the path of next up. Next up means scans, tests, appointments with oncologists, dermatologists, and the infusion staff. These thoughts are like stalkers in my mind, no longer allowing me the freedom to be.

Plans for the trip to Dana Farber unfold, questions to be asked are written in THE notebook, the medical backpack is unpacked and repacked. Stalker thoughts are unavoidable and while this is not the travel adventure we anticipate, having the blue print in place becomes the norm.

Lost in Thought

Inching closer to the big medical day, it’s more of a challenge to ensure that my health information is current, that all pieces are in place. Racing toward a date that I’d rather avoid, troll-like nasties invade my head space. Ugly, worrisome thoughts greedily take up residence, regardless of how I attempt to evict them.

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Stay the course!

Feelings of balance and ideas of inspiration are mislaid; moments of hope are obscured as medical melee overrules. The unknown of the next medical segment may leave us feeling lost and filled with fear. Forsake those feelings as best you can as solace comes from love and understanding.

In The Know

The best cancer tip I can offer is that being organized helps. It may not sound like much but a medical backpack, a notebook, a caregiver…any or all provide cancer support. Know your schedule and print it. You will learn how to find all the offices, labs, and treatment areas; though it sounds odd, there is comfort in having a routine for your cancer trips.

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Words of encouragement found on my fridge magnet from Dana Farber Cancer Institute.

Days and hours leading up to your next appointments may be fraught with worry. Organize ahead of your appointments, shoo away thoughts of the unknown to make room for thoughts of courage. #braverthanyoubelieve  #melanomatheskin #melanoma #cancer

We can-cervive,

Janis

I Scream, You Scream

Get Out!

National Ice Cream Day is celebrated annually the 3rd Sunday of July.  Perfect time to go out and have an ice cream! For those of you who are lactose intolerant, this post may not interest you, and for those who have skin cancer and fear the sun, I say, get out!

It’s tricky to have melanoma or other skin cancers because, well the sun is with us every day. Does it make you want to scream, having the deadly melanoma and having to be mindful of the sun? It’s about new sun-safe habits and creating easy routines.

Everyone should be using sunscreen, every day. Do you struggle with being outside? Does fear keep you from living in the moment? How many of your friends go with the belief that skin cancer won’t happen to them?

#EverydayisaSUNday

Recently handed an ad from the American Society for Dermatlogic Surgery, I was reminded just how much sunscreen matters. While I don’t know the ASDS personally,  promotion of sun safety is so important and I was pleased to see their reminder.

The sun is with us every day. Every, every, every day! With gray and dreary weather that solar reach is coming down to earth. Late in the day sunset viewing those rays are streaming at you. Middle of a cold winter day out snowshoeing that reflection off the snow is…well, a killer actually.

Skin cancer can make one very sun shy.  Don’t let melanoma and other skin cancers push you into the corner. You don’t need to live life in the dark either. Create sun-safe habits and have the courage to get out there and live your life! Wear sunscreen, clothing, and bring along your umbrella.

Favor a Flavor?

Oh, the options! My grandgirl and I have a few favorites at the top of our list though we love it all! Sugar cone and the very smallest size, because in America smallest still is a super size! Creamees just don’t cut it for us and we skip the condiments like sprinkles. It’s really about going out for an ice cream…together! Let’s talk ice cream..what’s your scoop?

And hey, did you see this?  U.S News has a listing of some free and discounted options for National Ice Cream Day. I think I might just google some ice cream shoppes local to me and get this mission going! I mean, National Ice Cream Day may be a gimmick and come only one day a year, but hey, why not? (I’ll write about sunscreen “flavors” another day).

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None of us knows what lies ahead in life (except death). Gather up that weary immunotherapy body or whatever your cancer is giving you today. Go out for National Ice Cream Day this Sunday.  Take a hike. Swim in the ocean. Mindfulness of sun days matters as does mindfulness of each and every day.  This day is the one that you have so put on your sunscreen and lather up with hope.

#EverydayisaSUNday #Nationalicecreamday #takeahike #melanomatheskin #melanoma #sunsmarts #favoriteflavor

We can-cer vive!

Janis

Seeing Spots

In the Beginning

Start, stop, start, stop. I began this blog post two months ago and basically, haven’t been able to get past the title. Melanoma is a game changer for sure. All types of skin cancer are formidable foes, and how do you do skin checks without letting it rule your life and your mind? I’m delving in to a bit of my cancer history here…the beginning and a tougher place to bring myself than I realized.

My first diagnosis was in 2015, after noticing and watching an area on my left cheek for a few months. It didn’t look particularly “stand-out, hey I’m different” and comparing my spot with online photos, well, don’t bother is my advice. Use your sunsmarts and get screened for anything worrisome; digital diagnosis is virtual, not real.

Another day, I’ll talk more about surgeries, treatments, radiation, clinical trials, and all that “fun” that is how we live now.  Today’s blog is about looking for unusual spots. That little area on my cheek wasn’t all that different than all the other spots. I mean, we all have our spots, right?

For me, the area felt different to the touch, an internal hmmmm that left me wondering “IF” something was going on. Going for a routine physical, I mentioned it to my doctor.  She felt it was nothing but worthy of a biopsy, so off to the local dermatologist I went.

X Marks the Spot

The call, the one we never want to get, never ever…came less than two weeks after the punch biopsy. The doctor, grave and concerned, informed me of the melanoma and that he could set up appointments with an oncologist and surgeon.

Yes, that was the start of my journey with cancer. We cancer patients all have our stories, our moment of truth, that one conversation.  The c-word that turns so many of our worlds upside down. Health information came from all directions. Phone calls and appointments were quickly scheduled. The dreaded health insurance queries ensued.

A lifetime of sun was now encapsulated in a tiny spot in my left cheek or possibly racing through my body; the belief that I would never have skin cancer stared me down in the mirror every day with a small,  purplish spot. Grateful that the carcinoma was right there staring at me, I wonder if I would have found it if it had been in a less obvious place?

Learning the Alphabet

A basic guideline, the Melanoma Research Foundation lists the ABCDE’s of melanoma with photos. Again, I would note this is not the gospel of diagnosis.  My spot looked nothing like these photos and only minor areas of note in the listing of ABCDE’s:

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I do think the guideline is just that, a guide to start your understanding of skin cancer. Cancer tips can be sketchy so go with your gut. The one thing I would note is that my first spot was purple, just a faint purple color-enough so that I noticed it was not like the freckles, skin spots, or scars. So the letter C was relevant for me.

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In hindsight, the letter C for Color and the letter E for Evolving were relevant with my first melanoma diagnosis. However, I wasn’t even aware of the guidelines.

The letter E, evolving, became present over time.  It was very slight but my spot was changing. I noticed it sometimes, again, a slight feeling in my cheek. Indescribable, something just felt different.

Blind Spot

Because I was always healthy and had no concerns. I was quite sure I didn’t have skin cancer; it really wasn’t possible. Until, it all was possible and not only did I have skin cancer, I had the deadly kind, melanoma. Courage came later.

Have a spot that looks different to you? Know that you have skin damage? Have you spent a lot of time outside? Get a skin check done by a dermatologist. Many people do this annually now. Don’t wait because melanoma is not just on the surface; it buries deeply into your tissue.  The deeper the cancer, the more challenging the treatment.

Spot On!

Ending on a positive note, a dear friend and another freckle face, was very concerned and supportive at my first diagnosis. As a retired nurse, it also turned out she was a bit concerned about her own bespeckled self. In talking one day, she confessed, “I’m looking at every friggin’ freckle and mole I have, thanks to you,  Janis. That’s a lot of work for a retired person!” Gotta love her!

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Yes, give those spots due diligence and #getnaked.  Screening and early detection matter for all skin types. Leave paranoia behind and enjoy life sensibly. I’d love to hear how often you do skin checks and what you use as your guide? #melanoma #melanomatheskin #cancer

We can-cer vive!

Janis

 

That Healthy Glow

There’s a lot I’ve learned about cancer in my lifetime, and more than I want to know about the consequences of melanoma. It really wasn’t all that long ago that many of us didn’t know just how deadly skin cancer can be.

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I grew up outdoors as I mentioned in an earlier blog post.  We didn’t realize how damaging the sun could be, or at the most, thought we needed to use lotions and creams after sun damage to keep our tan skin beautiful. I’m going to generalize here and say most of us knew of skin cancer but thought it was no big deal.  The worst that could happen would be we have a small area removed, right?

Wrong, wrong, wrong! How naive we all were and for all of those who still think they are “immune” to cancer and the power of the sun, I deeply hope that is true for you. I know I was absolutely fine with my tan, my rosy cheeks, my “healthy” look…until I found the first area on my face and after the biopsy, learned I was unhealthy, very unhealthy as I had my first cancer diagnosis of melanoma.

Making a List and Checking It Twice

I have a plethora of cancer tips to share with cancer patients and caregivers, along with everyone else. Today I want to share some basics about skin cancer.  A family member asked me if basal cell carcinoma will turn into melanoma if left untreated?  What a great question and the answer is no.  There are different types of skin cancer and while all of them are frightening, they do not start as one type and morph into another.

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Here is a very basic list of skin cancers:

  • Actinic keratoses-pre-cancerous growth
  • Basal cell carcinoma-most common skin cancer and should be removed to avoid disfigurement as it can grow into surrounding tissue
  • Squamous cell carcinoma-causes damage and grows deep

Any of the above skin cancer diagnoses should be taken seriously and mean there is abnormal cell growth.  They do NOT turn into melanoma and each has their own description and photo at the American Academy of Dermatology Yes, you can have more than one kind of skin cancer and each has unique characteristics.

  • Malignant melanoma-the most aggressive and deadly skin cancer

Skin cancer may travel though it’s far less likely to happen with the non-melanoma cancers in the first bulleted group above.  Early detection is beneficial, and with malignant melanoma early diagnosis and treatment is critical.

Get the Skin-ny

Have an area that you are wondering about?  Or have you had sun damage in the past? Dermatologists are a great place to have your skin examined or biopsied if necessary.  Even people who have had no skin issues now have an annual skin checkup.  Why not?  It’s simple and may just ease your mind.

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Please don’t wait if something doesn’t seem right.  My first area of melanoma didn’t look like the online photos; visit a real doctor to clarify any skin concerns. As I mentioned, early detection is very important, and be #sunsmart and take care of your skin now; it’s never too late! I’d love to hear from you on how you are dealing with your skin cancer concerns. #melanoma #melanomatheskin #skincancer

We can-cer vive!

Janis

 

 

The Sunshine Vitamin

sushi

Then

Wow, wow, wow!  Do you get overwhelmed with all of the options for good health?  I know I do.  Traditionally, I use to take just a multiple vitamin, knowing it may do nothing but also that it might just supplement the gaps in my quite decent diet.  That was it for the most part and with no health issues, it worked.

And Now!

I still prefer to not take a lot of meds, granted I am on a clinical trial that infuses my body with hope!  One quick thought I want to share is that if you have melanoma or are at risk for having melanoma, or just want to be careful in the sun, vitamin D might be a good consideration.

Why Vitamin D3?  To avoid skin cancer, we seek shade, wear appropriate sun shielding clothes, and wear sunscreen.  Vitamin D, also known as the sunshine vitamin, is created in our bodies through our skin and is essential to bone, skin, immune system, and general good health and feeling energetic. If we are watching our “sun intake”, we must find other ways to put Vitamin D in our bodies.

Cod Liver Oil?  Can’t Do IT!

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Food is one option with many fish providing us with a good source of oil and Vitamin D.  Here are some food options and the Vitamin D level for you:

  • cod liver oil, 1 tablespoon: 1,360 IU
  • herring, fresh, raw, 4 ounces: 1,056 IU
  • swordfish, cooked, 4 ounces: 941 IU
  • raw maitake mushrooms, 1 cup: 786 IU
  • salmon, sockeye, cooked, 4 ounces: 596 IU
  • sardines, canned, 4 ounces: 336 IU
  • fortified skim milk, 1 cup: 120 IU
  • tuna, canned in water, drained, 3 ounces: 68 IU
  • egg, chicken, whole large: 44 IU

For most of us, eating foods that give us a reasonable amount of Vitamin D is not realistic.  I LOVE fish, eggs, mushrooms, and most everything listed above (okay, I will never be okay with cod liver oil!).  The problem is that I don’t eat enough of any of it. Now that I am sun shy, I need to take a supplement.

Options Are a Good Thing!

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A dermatologist recommended Vitamin D3 to me and suggested 2-3 capsules a day, each 1,000 IU.  Mayo Clinic has a similar recommendation though there are many different recommendations online.  Talk to your doctor and determine if taking Vitamin D3 is right for you and what amount suits your health needs.

So many things to consider when a cancer patient.  I don’t intend to stay inside and hide, but skin cover is a part of the life.  Vitamin D is one easy way to take care of my body while having sunsmarts!  Do you take vitamin D supplements and how much? I’d love to hear your thoughts on this!

#melanomatheskinwerein #melanoma  #sunsmarts #vitaminD

We can-cer vive!

Janis