Photos + Tips For Getting Through Melanoma Skin Cancer Surgery And Recovery

After Jim was diagnosed with melanoma skin cancer, the next step was to decide on a surgeon in order to get those lymph nodes biopsied right away and determine whether the cancer had spread or not.

All of this happened rather quickly over the next 2 months.

While life went on normally, and Jim didn’t have to cancel or reschedule anything in order to work around doctor appointments and the surgery itself, it seemed we were always coming and going to or from doctors or hospitals for pre-surgery lab work and meetings.

By the way, here’s what Jim’s scar looked like at the site of the first biopsy one month after it was done:

 

Finding A Cancer Surgeon

We are fortunate to live near one of the best medical facilities in the country: Vanderbilt.

And we are super-fortunate that one of the best skin cancer surgeons is on staff there.

Our dermatologist told us that Dr. Mark Kelley (pictured above) is the best in Tennessee — possibly even the best in the Southeast — as far as skin cancer surgery is concerned. He trained under the guy who invented the lymph node surgery. He only does melanoma surgeries for a living. We couldn’t be in better hands.

We were confident with our decision to go with Dr. Kelly. And his team has been super-helpful to us all along the way.

 

Determining The Best Type Of Surgery: 2 Options

Dr. Kelley made it clear that there were 2 acceptable courses of action, based on the depth of Jim’s tumor of 2.2 millimeters:

Option #1:

Just do a skin incision to remove all traces of the cancer from Jim’s arm. That alone is acceptable because it hasn’t been proven that removing lymph nodes early has any impact on increasing cure rate — compared to just watching and waiting. With other diseases, removing the lymph nodes dramatically improves survival. This isn’t true with melanoma cancers.

Most people are going to do fine no matter what we do with their lymph nodes. For a small percentage of people who have disease in their lymph nodes, it’s going to reoccur no matter what we do. And there may be 1 or 2 out of 100 that we may affect their outcomes by removing the lymph nodes, but that number is small. Source

Option #2:

Do the skin incision and do a Sentinel Node Biopsy in order to identify the primary node leading to the tumor, remove that lymph node, and check it for any signs that the cancer has spread.

In young, healthy patients it’s usually beneficial to test the lymph nodes so you’ll know what your prognosis is. Then, you can do some things that might have an impact, doctors can follow you more closely over time, and you’ll have a better idea as to whether you have a 15 or 20% chance of recurrence versus a 40 or 50% chance. Knowing whether your lymph nodes are or are not affected is useful information for most people. Also, the Sentinel Node Biopsy doesn’t add a lot of risk to the surgery that you’re already having to remove more skin from the mole site. The only things you would be adding are: (1) a biopsy incision under the armpit, and (2) an injection where they inject a “nuclear tracer dye” into several areas immediately surrounding the mole. The dye will travel to the primary lymph node that feeds the tumor site, making it easy for your surgeon to identify which lymph node(s) need to be examined for cancer. The surgery usually takes about 2 hours under local anesthesia with a little bit of IV sedation. Most people are healed up and back to normal in a couple of weeks. People usually go back to work the Monday after a Friday surgery — if their job doesn’t require heavy lifting.

Jim chose Option #2.

 

Paying For The Surgery

Next, comes figuring out how we are going to pay for all of this.

The surgery alone is one thing. But after you’ve been diagnosed with melanoma skin cancer, you enter into a world of routine checkups, lab work, and follow-ups over the course of 5 years.

Since we’re both self-employed, we don’t have a formal health insurance plan anymore. Instead, we are self-insured via an HSA (Health Savings Account). That means each year we set aside money to put toward Jim’s and my annual health expenses. It goes into an HSA account, and we pay for all of our medical expenses out of that account. Should we spend more than $10,400 of our own money in any given year on our combined health expenses (his and mine), then a formal health care plan (through Humana) will kick in and cover anything beyond that amount.

We asked the dermatologist for a ballpark figure that we might expect to pay for the treatment of Jim’s melanoma skin cancer.

Taking into account that this is Vanderbilt, he felt that $10,000 wouldn’t be out of the question for basic melanoma skin cancer surgery. When you include all of the pre-surgery evaluations and post-surgery checkups that are required, that figure climbs even higher. And if the lymph nodes end up showing signs of cancer, then it could be much more — due to the additional treatment that would be required.

In our case, after talking to the folks at Vanderbilt, we’re looking at anywhere from $35,000 to $40,000 for the surgery and all of the post-surgery follow-ups that are scheduled to take place in this first year. (Jim’s surgery was 19 days ago. We haven’t even begun receiving all of the bills that are sure to quickly overwhelm us!)

We sat down with the hospital’s financial consultant about a month prior to his surgery date and came up with a payment plan that works for us. On the day of the surgery, we paid $1,000 cash.

Here’s what Jim’s scar looked like on the morning of his surgery (exactly 2 months after that initial biopsy):

 

What Jim’s Melanoma Surgery Was Like

It was a Friday. Jim was told to arrive at 6AM for all of the prep work, IV insertion, shaving of the mole site and armpit, etc. The dye would be injected at 9AM to identify the lymph node(s) in question.

His surgery would start at 11AM and last approximately 3 hours, followed by another 2 hours in recovery.

When Jim was wheeled into the surgery room, I went to the waiting room to sit with the families of dozens of other cancer patients who were undergoing surgery on this same day.

  

After the 3 hours had passed, and turned into 4 hours, and almost 5 hours, my eyes became glued to the patient board. Jim’s status wasn’t updated much, compared to the other patients’.

The reason for that was twofold…

First, while the one (primary) lymph node was found easily. It was much bigger than they thought it would be. In addition to its large size, it was also unusually sticky, so it took 45 minutes to remove it, instead of the usual 20 minutes.

Then came the next “problem.”

Jim’s skin doesn’t have a lot of give to it. So they figured it was going to be snug when it came time to stitch up the incision on his arm. (Remember, this was the site where the mole was removed, the punch skin biopsy was done, and the surgeon was going to remove more skin and tissue from that area — in order to make sure they got every last trace of the tumor.)

However, the regular straight line excision wasn’t holding together with normal sutures, so Dr. Mark Kelly was faced with the dilemma of trying a complex flap closure or doing a skin graft. He really didn’t want to go the skin graft route, since he hadn’t spoken with Jim about it previously, and it would mean yet another place on his body that would have to heal, in addition to everything else that goes along with skin grafts. So he made the incision into a very large S-shape instead. That way, he could pull skin from the lower curve of the S to meet up with skin pulled from the upper curve of the S at the original straight line incision site.

The wound site became a lot longer and more complicated than they initially anticipated it would be — which is why Jim’s surgery took so long.

The incision on Jim’s arm is a very large S shape. It’s almost 6 inches long, as opposed to the 3-inch straight line excision that was initially projected. To give you an idea of what Jim’s incision looks like, these photos were taken 1 day, 2 days, and 3 days post-op:

  

Also, the skin on Jim’s arm is now very tight — almost too tight, according to the surgeon. Still, it’s better than a skin graft (also according to the surgeon). However, going back to work on Monday isn’t as likely as it was before. And since they had to switch to nylon sutures in order to get things to hold, Jim will have to return in 2 weeks to have them removed.

Now we wait. We will get the results of the Sentinel Node Biopsy in 1 to 2 weeks. At that point, we’ll know once and for all if the cancer has spread or not.

This is how things looked when we left the hospital:

  

Oh, and for what its worth, if you’re about to undergo surgery like this… No matter how good you might feel after getting your bearings, drinking water, and peeing prior to being released from the Recovery room, the nausea will catch up with you the moment you step foot in the car to go home. For Jim, it was after we drove one block. For me, when I had my surgery for endometriosis, I think I made it 2 blocks. There’s just something about the motion from being in the car after you’ve had anesthesia. So be ready for it!

 

What Jim’s Recovery Was Like

Aside from the fact that Jim’s arm was very tight — which made it hard to move and uncomfortable in the first days after surgery — the Percocet (oxycodone 5 mg + acetaminophen 325 mg) helped a great deal with the pain. He only took it for a few days (once every 4 hours), instead of the full week that he was prescribed.

His hand, fingers, and wrist appeared very swelled for several days following surgery.

The spot where the lymph node was removed didn’t give him a bit of trouble (or pain) until 5 days after surgery. Suddenly, he had a spot in his armpit that was as hard as a rock. This made it uncomfortable for Jim to hold his arm at his side without pain. The surgeon said to keep an eye on it, and to come in right away if it became hot to the touch, or more sore. The pain and swelling under his armpit stayed constant for the next week. To help ease the pain, Jim put a water bottle in the freezer, then put that under his armpit for an hour or so at a time. Keeping his arm raised (stretched out, completely above his head) also helped to ease the armpit pain.

According to Jim, the most difficult part post-op was wrapping the incision site where his arm stitches were. If you got the Ace bandage wrapped around the arm tight enough, it would stay in place, but cut off circulation. If you got the Ace bandage wrapped around the arm loose enough, it would start to bunch up and eventually fall off.

We ended up switching to thin sterile pads and tender tape after the first week. They’re much easier to change and keep clean. And the tender tape keeps the pad in place without tugging on your arm hair.

  

 

Jim’s best tips are based on things he did not do, but wishes he would have:

  1. Keep the arm raised above your head as much as possible. This helps to significantly reduce the amount of swelling under the armpit. The nurse said if you don’t raise your arm, then you’re not giving the fluid anywhere to go. When the fluid builds up there, it creates a knot — which could lead to infection.
  2. Apply an antibiotic ointment on top of the sutures every time you change the dressing like after a shower. On the days that Jim didn’t do this, the skin began to turn dry and itchy all around the sutures.
  3. Stay off the computer as much as possible in that first week following surgery. The pressure that’s created when your wrist rests on the keyboard leads to even more swelling and achiness.
  4. Refrain from repetitive motions for the first 2 weeks — like constant use of the computer mouse, holding the phone up to your ear for too long, or overusing that arm in any way.

The most significant side effects from the surgery that Jim is still experiencing:

  • Tingling/numbness underneath the upper arm (on the back) – Nerves are almost always affected to some degree after lymph node surgery. (the more nodes removed, the worse the tingling and/or numbness will be  and the longer it will prevail. In most cases, it will get a little better over time. However, in come cases, it could last forever (especially if you had many lymph nodes removed). Jim only had 1 lymph node removed, but the tingling still remains for now. This is the biggest downside to the whole experience, in Jim’s opinion.
  • Numbness immediately surrounding the incision where the mole/tumor was removed – Nerves can become nicked or cut, depending on how wide and deep the surgeon must cut in order to remove enough tissue from the site of the tumor/mole. Sometimes feeling will be regained. Jim is still waiting.

This was Jim’s incision 5 days (left) and 11 days (right) after surgery:

  

 

Checkups And Follow-Ups

Jim’s first follow-up appointment was 4 days post-op. The surgeon, Dr. Mark Kelly, wanted to see how well his stitches were holding together. (Remember, Jim’s case was unusual. Since his skin wasn’t holding together after the typical straight-line incision & sutures, the surgeon had to make a huge S-shaped incision and use thicker sutures.) Also, Jim wanted to travel 8 hours by car that next morning in order to work at an NHRA race in Gainesville, Florida. Dr. Kelly said that it wouldn’t be a problem, as long as he took antibiotics (Cephalexin 500 mg, twice a day), kept applying antibiotic ointment to the sutures, and kept an Ace bandage over the sutures at all times.

At this point, the swelling was still intense — both in Jim’s arm/wrist and under his armpit. The doctor said that everything looked normal, but to keep an eye on the huge knot under his armpit. It was simply body fluid that was looking for a place to go. The recommendation: for Jim to keep his arm elevated (high, above his head) as much as possible. Unfortunately, Jim initially thought that “elevated” meant keyboard level — so he could still work on the computer all day. WRONG! He learned the hard way (a week later) that all the time he spent on the computer actually delayed the swelling from going down in his arm/wrist and armpit.

Jim’s second follow-up appointment was 2 weeks post-op. He got his stitches removed and met with a different doctor for the first time. Dr. Igor Puzanov oversees patients’  long-term medical care following cancer surgery. The purpose of this first meeting was to discuss at length all of Jim’s treatment options: Interferon versus no-Interferon (see below) and follow-up appointments. This is the person that Jim will be meeting with regularly from now on, as he will monitor all of Jim’s post-surgery bloodwork and lab tests over the next 5 years. (On the other hand, our dermatologist will be the one to perform all of the “intimate” full-body checkups every 3 months for the 1st year, then every 6 months for the 2nd year, and then annually for the following 3 years.)

At this point, the swelling was much less but still evident — especially under Jim’s armpit. The doctor said to watch for it to turn red and/or become hot — because that fluid build-up could definitely become a source of infection. If it gets any worse, he might need to have it drained. The suture removal was a little tricky since Jim’s arm skin is still so tight and a little swollen. He was warned that the incision could still split open, if he uses his arm too much (like being on the computer for too long) and if he doesn’t keep his arm raised over his head (to give the fluid somewhere else to go and eliminate the swelling).

  

  

Jim’s third follow-up appoint is scheduled for 3 months post-op. At that time blood will be drawn and labwork conducted. Dr. Puzanov will visually inspect the place on Jim’s arm where the melanoma first presented itself — since that’s the spot that’s most likely to see a recurrence — as well as Jim’s lymph nodes. (Remember, full body checks are being conducted every 3 months by Jim’s dermatologist as well.)

Jim’s fourth follow-up appointment is scheduled for 6 months post-op. At that time, the surgeon (or his nurse practioner, Shirlene Chase) will determine how well the large S-shaped incision has healed and address any scarring issues. Ditto for the lymph node incision site. I believe this will be Jim’s final meeting with his surgeon.

 

The Best Course Of Treatment After Surgery

Fortunately, we learned one week after the surgery that Jim’s lymph nodes were FREE of cancer!

From this point forward, watching and waiting is the #1 best course of treatment for him. An immune-boosting treatment (immunotherapy) is also an option, if he would like it. But it would only decrease the likelihood of melanoma cancer recurring in Jim’s body by 1% (from 20% to 19%), based on his stage: IIA.

In the event that cancer would have been found in Jim’s lymph nodes, then all of those lymph nodes would have been removed, and an immune-boosting treatment (immunotherapy) would have been considered, even though it’s only effective in 2 to 5% of the cases.

Interferon is the one drug that has been approved by the FDA to treat melanoma. (Chemotherapy doesn’t work with melanoma cancers.)

It’s fairly toxic and not always easy for people to take for the entire year. Here’s the routine:

  • You must decide to start Interferon treatments within 60 days of your surgery. (Otherwise, it’s even less effective.)
  • For the first month (4 weeks), you must go to the hospital every Monday through Friday (5 days a week) to receive an injection of the Interferon.
  • Then, for the next 11 months, you must give yourself an injection of the Interferon in your belly 3 times a week. (This is done in your own home.)
  • For the most part, you feel as though you’ve been infected with a virus, like a flu, for the entire year.

For low-and moderate-risk patients (like Jim who is Stage IIA), Interferon injections are left up to the discretion of the patient — since they are only minimally helpful, and the risk of cancer reoccurring is so low to begin with.

For higher-risk Stage III and above patients, Interferon is more often recommended — because it reduces the recurrence risk and lengthens the time until the cancer comes back. However, its impact on cure rate (your likelihood of being here in 5 years) is mixed. Some studies show a 3% to 5% benefit. But other studies show the cure rate is the same with or without the Interferon. Younger, healthier patients and those with young families tend to get the Interferon treatments, whereas older patients don’t.

There are also a few experimental drugs for melanoma patients that are currently being studied which could be another option for higher risk patients.

With other cancers, such as breast cancer, there are drugs that work throughout the body to eradicate the disease and improve chances of being cured after the lymph node surgery. That’s not yet the case with melanoma.

 

Questions We Had + Answers From The Surgeon

These are some of the questions we asked in our first meeting with the surgeon (one month before Jim’s surgery), followed by the Dr. Kelly’s answers (paraphrased):

  • QUESTION: Does melanoma start as one of the other “safer” cancers (basal cell carcinoma and squamous cell carcinoma) and fester into a melanoma? Or does melanoma cancer start as a melanoma and remain a melanoma?
    ANSWER: Melanoma cancer starts as a melanoma from the get-go. Other types of skin cancer don’t turn into melanomas.
  • QUESTION: If Jim had gotten the mole checked earlier, would it have been shallower and less severe?
    ANSWER: Yes, most likely. However, melanomas grow at different rates, so it’s difficult to say at what point someone’s tumor would have been detectable and less than 1mm in depth — which is when you want to catch a melanoma so that the risk of it spreading to the lymph nodes is virtually nil.
  • QUESTION: What determines how deep a melanoma skin cancer is? Length of time is my first guess — it starts shallow, then grows deeper over time. Is this true?
    ANSWER: Generally speaking, yes. But not necessarily. Some melanomas have a super fast growth rate and just pop up all of a sudden and can become very high-risk within months. On the other hand, some people have a spot for 20 or 30 years that slowly changes and then it’s ultimately found to be a melanoma. In most cases, there’s a mole there, which is not yet a melanoma, but is atypical. Then over time — over 5 to 10 years or even longer — an atypical mole can develop into a melanoma. It’s a slow process in most people. So in Jim’s case, 6 or so years ago that spot on his arm was probably just a harmless, atypical mole. Then somewhere within the last year or two a change occurred and it became malignant, developed into a melanoma, and began to grow down into the deeper tissues in the skin (rather than just staying on the outside of the surface of the skin). Once it’s under the skin, in the tissues, that’s when it has the ability to spread.From there 1 of 2 things can happen:
    1) For most people, it doesn’t gain access to the bloodstream or the lymph nodes. It just sits there. And if you take it out, you’re fine.
    2) But, if it gains access to the bloodstream or the lymph nodes, it then starts traveling to other parts of the body and it becomes more difficult to treat and contain.
  • QUESTION: How do you interpret what the dermatologist said: “One thing the pathologist commented on was the fact that it was intradermal.”
    ANSWER: When a cancer is intradermal it’s usually a sign that the cancer started somewhere else and spread to this this site. Thus, the importance of having those lymph nodes checked. Usually, when there’s a melanoma that is in the deeper tissues of the skin, yet it’s hardly visible on the surface of the skin (Jim’s mole wasn’t very raised and it had turned kind of clear – no real color at all), then it usually means that the cancer started somewhere else in the body first — instead of presenting itself as a mole first like most melanoma skin cancers do. Prior melanoma history is usually what causes that to happen. In Jim’s case, since there was no prior history of melanoma cancer, the surgeon was fairly confident that his cancer had started at that site on his arm, so being intradermal wasn’t all that concerning.
  • QUESTION: We keep hearing about chest x-rays and Pet Scans. Why are those things so popular and/or important.
    ANSWER: They’re popular, but not important. Melanoma cancers are much more likely to be found visually during full-body checkups than on scans or x-rays. By the time a melanoma cancer is visible in such a scan it’s too late — the cancer has already spread. Thus the importance of those constant full-body checkups! The only time that a chest x-ray is beneficial is if there’s no visible sign of melanoma, but you’re experiencing a cough, losing weight, or your bloodwork shows elevated liver numbers.
  • QUESTION: What are the true risks of still being in the sun even after this diagnosis? Is he more likely to keep getting more episodes of skin cancer? Would it make the healing of Jim’s current cancer even worse? Would it make any tiny trace of cancer that might have been left in his body to quickly spring up? Would new cancers be more likely to appear — and deeper than normal?
    ANSWER: Yes to all of the above.

Must-see video: A Skin Cancer Screening (…watch til the end!)

 

A Wife’s View Of Her Husband’s Melanoma Cancer

Now I know what they mean when they say, “When someone in your family has cancer, it’s like you have cancer too. You battle it together.”

I noticed these things right away:

  • You pull together and join forces on everything now.
  • You see things from a different perspective now.
  • You appreciate things more than ever now.
  • You realize just how lucky you’ve been to have what you have and to have done what you’ve done in life already.

Although skin cancer — even melanoma skin cancer — isn’t a death sentence, the diagnosis still causes you to pause and think about your future together and your own mortality.

 

A Great Tip So You Don’t Miss Important Information

My best tip as the loved one of someone who’s going through any type of illness is this:

Download a voice recorder app on your cell phone, and use that to record every single conversation you have with doctors, nurses, etc.

For example, on my Samsung Galaxy Nexus, I use the Voice Recorder app. There are several other voice records for Android phones, as well as many voice recorders for the iPhone.

The audio files have been a lifesaver for us!

We have referred to them several times in order to refresh our memory about a procedure, or to refer to something that has new meaning now since we’ve actually lived through it.

It’s also helpful so you’ll know word-for-word (and step-by-step) exactly what you’re supposed to do the night before surgery, the first day at home after surgery, etc. There are times when your emotions may be all over the place (like in the moments immediately following surgery) or the doctor may be talking so fast that you can only remember bits & pieces (in all of those pre- and post-surgery doctors appointments). So to be able to replay those words and instructions again brings a lot of peace of mind.

For what it’s worth, I just click record whenever they enter the room and then set the phone down on the chair next to me (or I hold it in my hand). That way, the idea that I’m recording won’t make anyone feel uncomfortable or “in the way”.

 

Updated Photos Showing Jim’s Melanoma Scar Over Time

As a reference point, this is what Jim’s arm looked like 3 days after surgery:

This is what Jim’s arm looks like at the time of this posting, 19 days after surgery:

And here’s what Jim’s arm looks like 3 years after surgery:

 

 

UPDATE: 2 New Tumors In Arm + 7 New Tumors In Leg

Other than the surgery described above, Jim didn’t do any other form of treatment after they removed the melanoma tumor from his arm. He had bloodwork drawn and visits with the oncologist every 6 weeks, but that was it.

He declined the opportunity to receive Interferon as a melanoma cancer treatment — because (as described above) the treatments were invasive & frequent, the side effects were pretty bad, and the success rate was pretty low. At the time, Interferon was the only treatment currently approved by the FDA as adjuvant therapy for melanoma patients (to lower the risk that the cancer would come back).

High-dose interferon is given to rev up the immune system in order to kill melanoma cells. Interferon is given to prevent the cancer from coming back after initial therapy, such as surgery. Source

One year to the day after his melanoma surgery, the cancer came back in the form of 2 new tumors in the same arm. They also found 7 small tumors in his right leg, as well.

Jim immediately started 2 forms of cancer immunotherapy treatment:

  1. A clinical trial where he received injections of Oncovex (or T-VEC) every 3 weeks
  2. An infusion where he received Ipilimumab (or Yervoy) every 3 weeks

The plan was to aggressively treat the tumors in his arm with regular injections, while also receiving periodic infusions that would attack any cancer cells throughout his body.

According to the rules of the clinical trial, in order for a tumor to be injected, it had to be close enough to the surface of the skin to see and measure over time. The tumors in his leg were not — they were deep and relatively small. So we relied on the infusion treatment to do its job — over time.

The short story: both forms of cancer treatment worked miraculously for Jim! Due to the continued shrinkage of the leg tumors (which were never injected during the clinical trial), we have to believe Treatment #2 described below was the most effective… and long lasting.

 

What Cancer Immunotherapy Treatment Is Like

Here’s what Jim’s cancer treatments were like…

#1 Treatment – Jim participated in a clinical trial at Vanderbilt — the Oncovex Pivotal Trial for Melanoma. 

This is where he received one type of immunotherapy treatment in the form of an injection called T-VEC. The injection is a genetically-modified form of the herpes virus that only attaches itself to cancer cells in the body.

That injection alone magically shrunk the tumors in Jim’s arm. After 6 injections (instead of the required 8 for all study participants), Jim’s arm tumor vanished completely and never came back.

These articles and videos explain the herpes virus injection better:

#2 Treatment – Jim had cancer immunotherapy treatment in the form of an infusion. 

Ipilimumab or Yervoy (also called Ippy) by Bristol-Myers Squibb was the best cancer drug available before the recently approved Keytruda hit the market (see below).

Ipilimumab (Yervoy) is a form of cancer immunotherapy approved by the FDA for the treatment of metastatic melanoma. Ipilimumab is a monoclonal antibody that targets CTLA-4, a protein that helps to regulate the immune system by suppressing the activity of T cells. By blocking the action of CTLA-4, Ipilimumab acts to take the brakes off the immune system, allowing it to fight the cancer cells. This agent is used to treat melanoma that has spread or that cannot be treated by surgery. However Ipilimumab can lead to serious immune-related side effects in the intestines, liver, hormone-producing glands, eyes, nerves, skin and other organs.

One of the newest forms of cancer immunotherapy that’s getting a lot of press right now is Pembrolizumab or Keytruda (also called Pembro) by Merck.  It’s the newest cancer drug specifically approved for melanoma. Jim’s cancer doctor speaks very highly of it as well.

Since 2011, 6 new drugs have been FDA approved for the treatment of melanoma, including three immunotherapies and three targeted therapies. The immunotherapy drugs are Yervoy (ipilimumab), Keytruda (pembrolizumab), and Opdivo (nivolumab). These drugs are checkpoint inhibitors that “take the brakes off” the immune system and enable it to fight cancer (see “Checkpoint Inhibitors” section, below). The targeted therapies are Zelboraf (vemurafenib), Tafinlar (dabrafenib), and Mekinist (trametinib). These drugs target common genetic mutations, such as the BRAF V600 mutation, found in a subset of melanoma patients. Source

These articles and videos explain the immunotherapy drugs better:

Even though the cancer returned in Jim’s arm and leg, it hasn’t stopped him one bit. He has never felt sick from any of the treatments. He has continued to do all of the same things he did before he got the initial diagnosis of melanoma skin cancer — including riding his motorcycle cross country several times, even to Alaska! A year and a half after his melanoma surgery (when the injections and infusions ended), he went back to routine 6-week checkups with the oncologist (including bloodwork), as well as quarterly MRI scans. Now, here it is 3 years after the initial diagnosis and he’s doing GREAT! A couple of the tumors are still in his leg, but their size is negligible and his cancer doctor isn’t concerned. Life is good.

About Lynnette

I like to help people find unique ways to do things in order to save time & money — so I write about “outside the box” ideas that most wouldn’t think of. As a lifelong dog owner, I often share my best tips for living with and training dogs. I worked in Higher Ed over 10 years before switching gears to pursue activities that I’m truly passionate about. I’ve worked at a vet, in a photo lab, and at a zoo — to name a few. I enjoy the outdoors via bicycle, motorcycle, Jeep, or RV. You can always find me at the corner of Good News & Fun Times as publisher of The Fun Times Guide (32 fun & helpful websites).

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  • Hey there! How are things going two years later? I had a melanoma on almost the same spot on my left arm. It was a big mole and the dermatologist wanted to remove it as soon as he saw it for the first time. Any way, i had a lymph node and more skin removed last week. The results were that there was one questionable cell there. So, doc scheduled the rest of my nodes in that area to come out. They are going to do that next Friday I am not excited about it. But who would be? How is the tightness in the skin of your arm? I am worried about the scar widening after the stitches dissolve. Thanks for sharing!

    • Hey Max: I had a little widening of the spot and the skin is a little tight - but all in all I haven't had any ongoing issues with the surgery. I have always looked at it as it's a small inconvenience for the long term benefits - which is a pretty normal life given the potential outcome of not being treated or not catching it early enough. Best of luck to you.

  • Hello, wish I would have found this before I went into surgery. This answers so many questions. Although my incision was just below my neck line on my back the tight skin I can relate to. 2 weeks after sugery things went bad when the wound got infected. I had 2 JP drains and the fluid color was not good. The Doctor put me on antibiotics and wanted to see me in a week. At 3 1/2 weeks tubes and stitches were removed. I'm still leaking clear fluid from the wound. I was told if things got worse it would have to be opened back up. Just adding all of this because fighting infections is not fun. I don't know how it got infected. We were very careful cleaning the wound. I guess things happen. The good part is the cancer did not spread.
    Ed

  • i wish,i have seen this website before my husband had his surgery.very informative and helpful.10 days ago my husband had wide excision of melanoma on his back and lymph nodes removal (just 2) with biopsy.two incisions on his back (10 in and 6 in ).3 in incision in the arm pit. Steri strips used to close .On day 4 steri strips came off in the shower on smaller incisions.Scars look fine so far.The larger incision had steri strips also,but looks like extra adhesives were used and it stays on even after showers.The biggest and deepest incision still painful.No signs of infection yet.No antibiotics were prescribed after surgery.Follow up appointment scheduled 2 weeks post op. Today is exactly 20 days after we heard about diagnosis (melanoma 3b).So far no post treatment plans.

    • Thanks for sharing your experience, Tonya. Sorry your hubby is having to go through this (you too). Rest assured, there are a lot of good treatment out there for melanoma cancer now (some are trials, but still helpful - at least they have been for Jim).

  • I have recently had melanoma surgery, removed from my chest. I have surgery next week to have some basal cells removed. I have done so much research. This was so much more information that I needed, thanks for sharing.

    • Sorry to hear about your melanoma surgery. But we're glad you've found our story helpful. It's been 3 years now and Jim's still doing great. Best of luck to you!

  • Thank you for writing this. I am 29 and I am going in tomorrow to have a wide excision of my melanoma. I feel like I have so many questions and so few answers. Is it just going to be cut out? How thick is it? Will I live? I knew nothing about melanoma and what I know now, 4 days later, isn't much more. And it scares me. I'm so scared. I guess I just have to get it cut out and then wait to hear that it is gone, or..... I dont even like to think of the rest. I could find no positive stories about this online. Everything I read was about people dying. You have given me some hope. So thank you so much. I'm so happy that your husband is doing well and that he had such a wonderful wife to be by his side. Terra

    • Hi Terra - People usually share the "worst case scenarios" online. We wanted to show that melanoma is not a death sentence. Jim is still doing really well - goes in for checkups quarterly with his cancer doctor. Everything looks great. My best advice is to try not to get down when it comes to dealing with your cancer. We also encouraged our friends and family NOT to focus on the cancer so much -- because whenever someone brought it up, it would put a huge damper on the day, even on the days he was feeling great. Your attitude plays a huge role in how your body heals and bounces back after surgery, meds, etc. Be sure to ask your doctor for answers to all your questions and stay positive!

  • So glad I found this and thanks so much for sharing! I got my results yesterday and had no one with me when I got them so I heard a lot of white noise in my head due to shock. After reading this I am recalling what the Dr. said. I don't have insurance, never needed it before so thanks for the cost estimate (she says with a big gulp!) I don't have an appointment with a Dermatologist yet as my diagnosis was delivered on Friday at 4:30 (my fault) but my Dr. is handling that for me. At least I know what I'm in for, same arm same spot. I never paid any attention to it, the nurse spotted it and was insistent I show the Dr. so Yaya her!!!

    Thanks again.

    • Hi Laura - Kudos to the nurse who spotted it, and to you for doing something about it right away! That makes all the difference. Hugs to you. You're gonna do great. Glad you found some helpful info from our story.

  • Thank you so much for posting this detailed account of your husband's melanoma journey. I hope that he is having continuing health as it is difficult to determine how old this article is. I was very ignorant of melanoma when I was diagnosed and with all of my research, this has been the most helpful information I have found. I am just over the one year mark of Melanoma 1B located on the back of my left shoulder (removal of three nodes in armpit and one in neck - all clear). It has been one heck of a year, and my experience mirrors your husband's in most respects. I developed cellulitis in my left arm and breast two months post-op, which led to lymphedema. Location and tumor depth also resulted in severe nerve/muscle damage limiting my left arm range, but with physical therapy I have managed to avoid a major muscle transfer procedure. I guess the points that I want to make are that if you are diagnosed with melanoma, act quickly and aggressively. Be vigilant with body checks and see a doctor as soon as something seems suspicious. Catching this early is the best way to have a positive outcome.

  • Thank you so much for sharing your story. Two weeks ago I had a wide excision surgery to remove a nodular melanoma on my left shoulder and also had 3 lymph nodes removed. Huge praise that the lymph nodes came back all clear! I go in tomorrow to have the stitches removed (which by the way look like I was attacked by a shark). My first time to the dermatologist was 2 months ago and now here I am reading sites like this and talking about things like 'cancer stages' and 'survival rates'. I would like to echo what everyone says about cancer...it's all about early detection. If something doesn't look/feel right just go and have it checked out. I have to say while reading Jim's story my heart sunk when I read he had new tumor discoveries only a year out. I am a 35-year old working mom with 3 little ones and I would love to think this past month is a chapter I can close, however I know it doesn't work like that. I am managing the physical pain post-surgery, but I didn't realize that there are mental side-effects that come with being told you have cancer. A new fear that I wasn't ready for, but also a new found joy! I know my life here is a gift and that I am so grateful to have everyday with my family. When the kids are melting down I remind myself I am thankful to be here for the meltdowns! I am grateful to have had this melanoma discovered so early that I can do everything to protect my skin (and my family's) from here on out. I know I'm new to this scene and have a lot to learn so it's stories like you and Jim's that are encouraging, informative and supportive. Thanks again for for sharing!

    • Hey Julie - thanks for sharing your story and picture. If your scare is anything like mine - it will almost be flat once it heals up. I used to tell my wife that I had to come up with a good story about my scare - she says beating cancer is a pretty good story. So, wear your scare with pride. You're a cancer warrior!

      I agree with you that the big "C" word changes your life. I certainly think it changed mine for the better. In a weird way - I count it as one of my blessings in life. It really made me open my eyes and appreciate everyday. Like you said - life is a gift - and we're still here because our work here is not done:)

      Melanoma can be a killer if not detected early. So, another note to everyone - see your dermatologist regularly!

      I had a re-occurrence almost a year to the date of the first one.There are a few new drugs on the market that have shown real positive affects against Melanoma. So, if anyone reads this and is confronted with Melanoma - ask your Oncologist about the new immunotherapy drugs out there to see if you're a candidate for a non surgical solution.

  • Lynnette & Jim, I can’t thank you enough for documenting and sharing your melanoma experience. I’m going trough this right now and your site has been an invaluable resource.
    --------------

    - I’m 20 days out from my wide local excision my chest.
    - The remaining stitches are due to come out in 2 days.
    - My melanoma was 2.6mm deep and my lymph nodes were all negative, so I’m not planning on any adjuvant treatment, and hopefully this is the last of it.
    - At this point my biggest concern is healing this huge scar in my chest.
    - I’m not so much concerned about the appearance, but with functionality.
    - Your chest muscles are constantly being used and stretched, etc, so I’m concerned about things like tightness, elasticity, tension, the tensile strength of the skin, future contracture of the skin flap, etc.
    - And the entire area between the upper and lower incisions is still completely numb, which kinda freaks me out.

    --------------
    Just so I’m clear about Jim’s reoccurrence.
    1. These 9 tumors that were found 1 yr later [2 on the arm, 7 on the leg], these are moles/melanomas, right?

    2. Did you guys notice them, or were they first discovered by your dermatologist during a regularly scheduled every three month body check?

    3. Were they then punched-out and biopsied?

    4. And then were you offered a choice of treatments and you elected to go with immunotherapy, rather than go thru more of the same surgical excision process as with the initial melanoma?

    5. Was this immunotherapy option only available because you were at Vanderbilt and they were conducting trials? Meaning, if you were at just a regular hospital you would most likely have been steered right back into the surgical route?

    6. Finally, if you had to do it all over again [knowing what you know now], would you have skipped surgery on the initial melanoma and gone straight to immunotherapy?

    Sorry for all the questions. I just assumed that any new melanomas were always removed no matter what, and that any immunotherapy was strictly adjuvant. Most likely I'll never be confronted with new melanomas, but if I do, I want to make sure I fully understand all my options.

    Thanks again, and so glad to hear that Jim is doing so well.

    Kevin

    • You guys are cancer warriors! Way to keep up the fight. Sounds like you guys are in good hands.

      My reoccurrence was almost a year to date. But, now coming up on 5 years clean. Good luck to you guys

      • I think this replay was to my post... And I appreciate you taking the time to reply. We are 'Fellow' cancer warriors indeed... you my friend are too. We all are.. Its a nasty disease that shows no discrimination... Stay vigilant on your monitoring... We are blessed with another day.

    • Hey Kevin - glad the article helped. I got the letter "S" for a scare - it appears yours will be the letter "H" maybe. A lot larger than mine for sure - but it does look similar to mine in the healing process.

      At this point my scar has healed pretty nicely. And while it still feels a little "tight" - I don't feel that I have any loss of motion or limitations from the extra tightness.

      The numbness in the surgery area (for me) has pretty much gone away - I don't really notice it. Although I would imagine that the chest has a few more nerves than the top of an arm. Plus, at 20 days out - there's probably still a little swelling going on, I'd give it some more time if I were you before starting to worry.

      The area under my arm where they took the nodes still tingles now and then - I mostly only notice it when my shirt "flaps in the wind" when riding our motorcycle - but I just notice it - doesn't really bother me at all.

      To the second occurrence for me - I'll try an address that point by point as you outlined,

      1. When the cancer reoccurred it was melanoma.

      2. I discovered the ones on my arm - the ones in my leg were discovered on a CT Scan the doctor ordered after the ones on my arm appeared. A few months prior, my blood work was coming back abnormal, so we were all on the lookout for something - it just took awhile for them to show up (sneaky bastards!).

      3. Once the bumps under the skin showed up (about the size of a pencil eraser) - doc ordered a biopsy and CT scan.

      4. I was offered a choice of treatment. Normally as you know - cutting the melanoma out is kind of the "Standard Operating Procedure". My doc let me know about a clinical trial that he believed would do the trick. Had it just been the ones on my arm - I probably would have opted for removal. The ones in my leg concerned him because they were so deep. With the big thigh muscle and the area that would have been cut on - he was concerned about the use of my leg afterwards. As you were said - I wasn't concerned about the look - but the doc was somewhat concerned it - so we opted to give the clinical trial a try. Surgery was still an option for me at any time.

      5. The immunotherapy was available on the trial at Vanderbilt and I know at the UCLA Medical Center as well (Probably more than that - but I was aware of those 2). I received a second opinion from a recommended doctor at UCLA. He said that they were conducting the same trial and that if I were his patient he would have recommended the same trial as a form of treatment. The trial that I had is now approved by the FDA - worked wonders for me - and I would recommend anyone try it if your melanoma is a candidate for that sort of treatment.

      6. It hard to say - since I'm not sure any trials were available to me on the first go-round. Or more importantly if the first spot (it was a mole gone bad) would have even been a candidate for that type of treatment. But - knowing what I know now - and if my original melanoma was a candidate for that type of treatment - i wouldn't hesitate to chose immunotherapy for me. The side affects were minimal and the results were awesome.

      Good luck on your recovery and please check back in with updates and photos - I think a lot of people that are going through this are helped by the conversations we all share here.

  • https://uploads.disquscdn.com/images/5f96490efccc9d04093d9e67a1dee379e863c9a883c51e0c9d22ba2f2c752be7.jpg Jim,

    Good Morning... As everyone has said, thank you and your wife for documenting this so brilliantly. My case is almost "identical" to yours... same exact spot, same exact look. Mine never looked like melanoma at all. It presented as a scaly spot that I would pick at a lot. Kinda flaky and itchy... Never dark or black, always pale/white looking. I NEVER would have ever imagined that it was cancer. I had some of these taken off before, always came back negative. However this one had melanoma under it. The official name for it is lichen simplex chronicus, or pickers nodule. The dermatologist that took if off, thought very little of it and just removed it, but as always... it gets sent to pathology.

    Well... low and behold, sucker came back melanoma. Breslow depth 1.09 mm... Just barely out of the no big deal zone... but freak man... melanoma all the same.

    My wife and I live in the Houston Area... well... because my wife has Stage 4 Metastatic Breast Cancer. She recurred 12 years after her original dx. We are a cancer family, familiar with the protocols and treatments. She is being treated at MD Anderson, by one of the top 5 BC Oncologist in the world, Dr. Vincente Valero. She is on a new targeted therapy, Ibrance and takes Letrozole for hormonal blockage. She is, after 8 months, NED(No Evidence of Disease)... yep... cancer free once again. We plan on keeping her there too. During her original early stage breast cancer, she underwent AC+T chemo, radiation and lumpectomy. During her chemo, with her immune system low... it allowed a melanoma to grow on her shoulder. Very early <1mm... no big deal right... well... it recurred exactly one year later, subcutaneous, but still excise-able. She did choose to do the Interferon and made it 11 MONTHS!!! Unheard of really... she did good. But anyway... back to ME!!!

    So I am 7 days post surgery... see today's pic. Still waiting on Lymph Node study, they took two. Surgeon said the two lymph nodes showed absolutely NO sign of disease, smooth, firm, shiny and healthy. He is confident there has been no spread to they lymph system... BUT, as he reminded me, we gotta wait on the path. I am also being treated at MD Anderson, and I am not sure how my wife and I do this, but I was assigned to Dr. Jeffery Lee... Co-Director of the Melanoma Center and Chairman of the Surgical Oncology for MD Anderson. He is a fantastic surgeon and oncologist.

    Anyway... I am not sure why I am writting... I am just scared brother. Was hoping you would pray for me and my wife. We are fighting the crap cancer everyday... I just wish instead of spending so much effort and money on building weapons to kill each other... The world could just call a truce and apply all that effort to completing a CURE, a real CURE to cancer. ALL Cancer... Then we can go back to killing each other... I guess. BUT... If I had my choice, we would cure Stage 4 Metastatic Breast Cancer FIRST!!! Sorry man... Melanoma second... !!! :)

    Your story gave me info, reference and hope. Would love to hear an update on you. BTW... When was your original dx?? And give a time line on your recurrence etc...

    Thanks
    Bruce

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