The Black Beast That Will Not Die!
I am a 52 year old female with Multiple Sclerosis and Melanoma. I was diagnosed with MS in 1992. I started to see a dermatologist in 2007, knowing that my complexion, freckles, red hair and blue eyes, yes, I am a Ginger, left me susceptible to skin cancer. I spent a lot of time in the sun, as a kid, and had numerous burns with blisters over the years.
In that first exam, July 2007, he did a thorough check of my body, making notes about what was where and the ones we should keep an eye on. He found and removed a suspicious spot on the side of my left calf. It was analyzed and showed “questionable” basal cell. He did a deeper excision at that location, which came back with clean margins. I had an annual appointment in July. No issues were found in 2008 or 2009.
Around the holidays, 2009, I noticed a spot on the back of my left calf that was not there in July. As I watched it change and get darker in color, I called his office and asked if I could be seen sooner than July. They said he was booked and put me on a cancellation list. Apparently, even after a few more calls, my request for a cancellation appointment fell through the cracks. I specifically told them that I was concerned about how quickly this thing was growing and changing, it had turned black!
Needless to say, when I did get to visit him, July 22, 2010, he was immediately concerned about that spot, and yelled at me for not coming in sooner! I told him I called to get in sooner and he was going to “discuss” the process of the cancellation call lists with his staff. I got the impression that he was sure there were canceled appointments and I could have seen him sooner! Of course, hindsight being 20/20, I would have been on the phone every hour of every day until I got in! OR called someone else!
He removed 3 spots that day
One was nothing, another was basal cell and the one on my calf was Melanoma!!! He removed more from the basal cell, and got clear margins. He told me I should see a plastic surgeon to have the Melanoma excised, never mentioning a word about what I was facing. I didn’t realize, until I saw the plastic surgeon, how big this deal really was!
The cells were more than 2 mm deep, so the surgeon described how he would take a 2.5″ chunk from my calf, all the way down to the muscle! That was the first that I heard about the possibility of the cancer spreading to my lymph nodes. He advised that I allow him to conduct a sentinel node biopsy (SNB) prior to removing the cancer. I had no idea what I was going to learn that day and drove myself to that appointment. I almost didn’t make it home because I was so distraught, I couldn’t see to drive.
The wide excision and SNB was done on September 14, 2010 (My 45th birthday!) Stage II. Unfortunately, the biopsy indicated that it had traveled to my lymph nodes and one was removed to be analyzed. (Stage III)
The stress of my diagnosis and realization of what I was facing, sent me into a severe MS episode! They used IV steroids to get me through it, which agitated my acid reflux, and presented as chest pains. I spent a day in the ED being treated for a possible heart attack and it was reflux all along. They treated me with Nitro twice, which gave me a migraine headache for 2 weeks! The MS went into remission. Where I used to have numbness, now there is pain!
The analysis on that node was positive for Melanoma (Stage IIIa)
That takes me to the next recommended step. I was referred to John Hopkins and saw a medical and surgical oncologist. They both recommended a complete dissection of the nodes in my left groin. The medical oncologist noted that he would not treat me with interferon or immunology because of the MS. On October 31, 2010, (Halloween) I had a lymph node dissection of my left groin. Numerous nodes were removed, two of which were positive! (Stage IIIb)
It took a LONG time to recuperate from that surgery. I set records, at the oncologist’s office, with the amount of fluid I was producing. I was making 2-3 trips to Hopkins, per week, to have it manually drained! Then, in February 2011, I went to the ED at my local hospital, with a high fever and severe stomach pain. There was an infection in my wound! High doses of antibiotics were given. Since they didn’t perform the original surgery, my local hospital wouldn’t touch me, so they shipped me off to Hopkins, via ambulance, after 2 days of antibiotics.
They didn’t listen
On February 14, 2011, (Valentine’s Day) the surgeon re-entered my wound and removed the infection. I was then sent home with a wound vac to help with the healing process! While the medical oncologist, at Hopkins, would not consider interferon treatment because of the MS, my neurologist said, “MS is a pain in the ass. Melanoma could kill you. Let’s treat the melanoma and worry about the MS if we need to.” They didn’t listen.
I contacted Cancer Treatment Center of America, in Philadelphia, with the hope that their Melanoma Specialist would work with my MS Specialist at Hopkins to get me treatment. They didn’t even let me stay past the 1st day, saying there was nothing they could do. I believe they realized I wasn’t going to get treatment, but if I did, I wouldn’t be doing it there. No money for them, so they turned me loose! They wouldn’t even run the BRAF factor DNA test on the sample they had from my dissection!
I managed to finally go back to work, after being off for almost 6 months! I determined, in March 2011, because of lingering effects of my MS episode, I could no longer work full-time. I had to use a walker to get from my car to the office and it was less than a block away! This is when I applied for, and was immediately granted, Social Security Disability. I went part-time at my job, after 13 years of service. Oh, while all this was happening, I planned and hosted my first Melanoma Awareness Benefit (October 2012). My mission . . . educate, advocate, raise funds for research!
When the February 2013 scan came up, as I was no longer full-time, I was paying COBRA premiums (almost $800/month) and had a $1,500 deductible. I would be eligible for MediCare in March 2013 and seriously considered postponing that scan until then, so I didn’t have to pay for it out of my pocket. I decided not to postpone.
After almost 2 years of clean scans…
After almost 2 year of clean scans, this one showed an enlarged node in my abdomen. Let the fun begin!!! My employer would not work with me concerning my job. I was scheduled for surgery March 19, 2013, and would need at least 5 weeks to recuperate. This time, NOT doing interferon treatment was not an option. That meant 4 more weeks that I would not be able to come to work. They would not let me work from home, which I could have done, easily. So, after 15 years of service, I was forced to resign!
A dissection of nodes in my abdomen was performed in March 2013. Only one node was positive, but it was attached to a major blood vessel. (Stage IIIc) The surgeon had to bring in a vascular specialist to assist in removal. Because of this, they decided I should have radiation, in case that vessel was compromised. Then I began Interferon.
This treatment and MS do not go well together!
I made it through the first 30 days. After those 30 days, I was to start self-injection 3 times/week for another 11 months! Having MS made my 30 days so miserable, I chose quality of life and decided not to go forward. All I have read indicates you get the most “bang for your buck” in those 30 days and I couldn’t see living like that for a whole year! The benefit wasn’t significant enough to make it worth it for me.
As usual, things didn’t go smoothly with surgery site. During set-up for radiation, they noticed a fluid pocket. They would not go forward with radiation until it was gone. I had to have a drain placed to assist with drainage of fluid. This is a very painful process that usually takes place when the patient is still under anesthesia. I was wide-awake for it! It took forever for it to dry-up! And during swimming/boating season!!!
Radiation was next! This, for a change, went off without a hitch! I did start losing my hair. I am now convinced that a combination of the Interferon and the radiation to my abdomen threw me into menopause, which helped with hair loss! In November 2013, I had a CT to see if surgery, treatment, radiation was successful. It was a clear scan!!! Next scan was scheduled for April 2014.
I have control over one thing
I hosted the 2nd Annual Melanoma Awareness Benefit, (May 24, 2014) which has been my focus since diagnosis in 2010! I was able to send more than $5,000 to the Melanoma Research Foundation! In a world full of treatments, scans, needles, drains, etc., I have control over one thing . . . I will bring awareness to my community and raise money for much-needed research to rid the world of the Beast that is Melanoma!
Again, after almost 2 years of clear scans, I had an issue in June 2015. During prep for my 3rd Annual Melanoma Awareness Benefit, I started having problems speaking and keeping my words and thoughts straight. The Monday after the benefit, I went to the ED. I was immediately admitted and, after an MRI of the brain, it was determined that there was a tumor in my left frontal lobe. The Black Beast was back!!! (Stage IV) I had a tumor retraction on June 15, followed by brain radiation surgery. The radiation, apparently, did not work. The tumor began to regrow. The second retraction was September 9, 2015.
Unfortunately, in a follow-up MRI in March 2016, I had more bad news! Also, unfortunate, this tumor was inoperable! Because of more precise equipment, I was referred to Penn State Hershey Cancer Institute. On May 19, 2016, I had Gamma Knife Brain Radiation. Radiation was the only defense I had against the beast that time, and it worked! I just followed-up at Hershey (November 2017) and the MRI was still clear. Next MRI, March 2018, almost the 2-year mark from the procedure. In the rest of my body . . . not so lucky!
…a pea-size, flesh-colored lump…
In March, 2017, I had a pea-size, flesh-colored lump that popped up on my upper left quadrant (under left breast, on rib cage). Dermatologist and Oncologist said it was nothing to worry about, unless it starts being painful. Of course, it did become painful. I made an appointment with my local surgical oncologist, who immediately did a needle biopsy. Results were inconclusive. He then did a deeper biopsy with the same results, inconclusive. He then ordered a PET scan, as I hadn’t had one since 2013.
Well, needless to say, the PET indicated that the lump in question was, indeed, Melanoma. It also indicated 2 other subcutaneous spots as well. By this time, the original lump was getting much larger and creating a lot of pain and pressure. We then tried a new treatment for this type of subq tumors. It is called Imlygic and it is a live herpes virus that is injected, directly into the spot. The logic is that it would spark an immune system reaction to kill the herpes, therefore, killing the cancer. Well, that process was short-lived! When a regularly scheduled CT scan showed that a few nodules, on my lung, that we had been cautiously watching, began to grow and multiply! That means my last line of defense . . . the immunotherapy that is Keytruda! Risk is worth the benefit!
But . . . before anything could be done about that, this tumor under my breast had to be extracted!!! It had become very painful and infection was running rampant! On July 3, 2017, I had a softball-sized tumor removed from under my rib cage!
Where I am today
So . . . that leads me to where I am today. I just did my 8th Keytruda infusion and finished radiation 2 weeks ago. Oh, the pesky tumor removed in July? It didn’t want to go away, so it left 5-6 lumps, right under my skin from the incision up to where my breast meets my body! That required a 20-dose course of radiation. That seems to have worked on the lumps, as they are gone, but the burns left behind are another story! UGH! It just continues . . . had a port placed in September, in order to get Keytruda infusions. In case you are trying to keep count, that is 11 Melanoma-related surgeries in the past 7 years!
The side effects were pretty brutal, at first, but now that I’m into it, they seem to be equaling out. Well, I should say, I am able to control them with medications and am learning a new level of acceptable pain, on a daily basis! The CT, done in November 2017, showed what was expected! The nodules seem to have double and tripled in size! That means the Keytruda is working! The theory with this treatment is, that it prompts your immune system to create t-cells, which then attach themselves to the cancer, then kill the cancer. The increase in size, indicates that t-cells are doing their job. After a few more infusions, they will order another scan that, hopefully, will show reduction in size!
That’s what I expected! What I didn’t expect? 1 new lesion, in the other lung and another new subq tumor in my abdomen!!! And so it goes! Don’t know that I will EVER hear NED! (No Evidence of Disease), but I am still here and Still Kicking Melanoma ASS!!
Keep on keeping on!
Bringing awareness and raising funds to help rid the
world of the Black Beast that is Melanoma!!!