Heather

Surviving Stage IV Melanoma
 
My name is Heather Devlin. I am 41 years old. I'm married. I live in Bellingham, WA. I am a stage IV melanoma survivor. 
 
I am a native to the Pacific Northwest, What sun we had I spent a lot of time in as a young person. I also was a regular, and sometimes frequent, user of tanning beds. I have had several blistering burns before age 20. I have a lot of freckles and moles.
 
 In late 2009. One of my many moles started to change. It was on my right ear. It was getting bigger and darker. I didn't think a lot of it until I woke up one morning with blood in my hair. I realized the mole had burst and bled overnight. At this point I knew I needed to have this checked out. I was able to see my PCP who agreed that it should be biopsied but not by her, she recommended that  I see a dermatologist. My dermatologist looked at my ear, the mole looked very innocent at this point. He agreed it should be biopsied, at that appointment. He says he would not have biopsied it based on its appearance, but did based on my explanation.
 
The pathology report, including a second opinion from the UW, confirmed malignant melanoma. February 25, 2010 I was diagnosed with a .4 mm thick, Clark level 3 malignant melanoma. My dermatologist referred me to a plastic surgeon for a wide excision surgery. Based on my tumor's thickness, sentinel node biopsy was not indicated. I had the wide excision surgery. All of the margins were clear. 
 
Stage I melanoma gone. I was a cancer survivor. 
 
Fast forward about a year and a half, August 2011. I started having intermittent but significant abdominal pain. I felt bloated, had cramps, sometimes stabbing pain, and was unable to engage in activities I normally enjoyed. I saw my Dr. a couple of times. I had some blood tests, also had an upper abdominal ultrasound. No reason for my complaint was discovered. 
 
About a month later, a lot of things start happening in a short period of time. On a Saturday morning , 9/17, I noticed a bump under my left arm. Monday morning I saw my PCP. She ordered an ultrasound. Thursday, 9/22 I had the ultrasound. The radiologist report was inconclusive. A ultrasound guided core biopsy was scheduled for the following week.
 
Friday 9/23, the day after my ultrasound appt, my abdominal pain was back. It was pretty bad and we weren't quite sure what to do. I was able to sleep and hoped I might feel better the next day. The next day came and I did not feel better. My husband is a paramedic and he was on shift that day. I visited him at his station, both he and his medic partner let me know that I looked terrible. I wasn't surprised or insulted because what they didn't know was that I felt worse than I looked. I went home showered, put on some comfortable clothes and drove myself to the Emergency Department. This was Saturday 9/24.
 
The testing begins. I explained my history and symptoms. My labs showed low red blood cells, low hemoglobin and low hematocrit. My abdominal pain was much worse, radiating up into my clavicles. I had a pelvic ultrasound and CT. Both showed hemoperitoneum, a lot of blood in my abdomen. I also had 2 large masses present. Normal ovaries could not be identified.
 
At this point, the ob/gyn on call, Dr. Mora took over my care. He recommend I be admitted and my hematocrit and hemoglobin be monitored over night. He was hoping that whatever was bleeding would stop on it's own. If it didn't, He discussed the possible need for laparoscopic exploratory surgery with or without blood transfusion.
 
Early the next morning, 9/25, Dr. Mora arrived, my labs showed I was still bleeding internally. I just remember feeling so tired. He recommended surgery right away.  I had laparoscopic surgery, during which Dr. Mora found 3 liters of blood in my abdomen/peritoneum. Both of my ovaries were actively bleeding. Dr. Mora repaired my right ovary, my left ovary was damaged beyond repair and was removed. Of the 3 liters of blood, I lost about 2.5 and received 750 cc's of my own blood back using a cell saver.
 
 I stayed in the hospital 1 more night. My H&H started to rise and I was feeling better.  I was fortunate not to need a transfusion. I went home on 9/26. I actually felt quite happy that the source of my mysterious pain had been found and addressed. I was scheduled to see Dr. Mora on Thursday 9/29 for follow up.
 
On Tuesday, 9/27 I was at home recovering when I received a call from Dr. Mora asking if Kelly and I could come in earlier than our scheduled appt, like right now. Kelly and I went to Dr. Mora's office, it was after business hours, we weren't expecting good news. Dr. Mora explained that the pathology report had been completed on the ovary he had removed, it was positive for melanoma. 
 
We were all stunned! Speechless! I went from Stage 1 melanoma survivor to stage 4 melanoma patient in that instant. Metastatic Malignant Melanoma. 
We didn't have many questions, we didn't know what to ask. He had two recommendations: be seen at SCCA and stay off the internet.
 
We were able to get in to my PCP early the following morning. She ordered and scheduled a full body PET/CT and brain MRI, as well as a consult with an oncologist in Bellingham.
 
My Brain MRI showed no metastatic disease. My PET/CT showed metastatic melanoma in one lymph node and 6 subcutaneous soft tissue nodules within the chest, abdomen and pelvis.
 
I was referred to SCCA and specifically Dr. Margolin. I had my first appointment on October 12. She had reviewed my imaging studies, we reviewed my history and current presentation. She discussed my treatment options. We decided to try IL-2 first. We understood the response rates, few patients responded at all and even fewer completely responded. Meaning some people had a durable, long term, disease free response. IL-2 sounded like the obvious albeit undesirable first choice.
 
We were scheduled to check into the ICU at UWMC in one week on October 19th to start my IL-2 treatment.
 
I felt pretty good. I felt strong and positive. I had healed from my surgery. I had tremendous support from my husband, my family, and my friends. I was ready to take on what I thought was coming.
 
My husband had made arrangements so that he could be absent from work and stay with me while I was in the hospital. This was the beginning of his job as my full time caregiver. He stayed every night on a reclining chair/bed. We checked into our room at the hospital on October 19th. PICC line placement was the first step, it went great. I received infusion #1 at 6pm. I was on my way to receiving all 14 infusions. Which I fully intended to do.
 
The first cycle went pretty well. I had what I guess are typical reactions. I'll list them in the order they occurred; redness, itchiness, elevated heart rate, low blood pressure, generalized discomfort, nausea, loss of appetite,  capillary leak leading to weight gain, fluid in my lungs, peeling skin, confusion, and hallucinations. A good day was one in which I was able to shower, that made me happy. I stopped eating after about the second day. We had started an online blog soon after my diagnosis so that we could keep friends and family up to date. I was able to post on it up until about day 5. By this time I couldn't see straight, couldn't make my fingers hit the right keys or make a coherent statement, this is when Kelly started blogging for me. My most significant reaction during the first cycle was low blood pressure, mostly because it could have kept me from receiving infusions of IL-2. The nurses, nurse practitioners and doctors were all so awesome on 8NE. The medications and combinations of medicines to help alleviate the adverse reactions made my stay and treatment bearable. Without them, and the support of my husband, I would not have made it. We stayed in the hospital for 7 days. I received all 14 doses. I gained 45 pounds. My skin was peeling off in multiple areas.
 
We spent a week at home. I was tired, itchy and my skin was peeling. I lost the 45 pounds, or most of it. Then we checked back into the hospital on 11/3.
 
My reactions to IL-2 started sooner during the second cycle. By day three I was pretty out of it. My blood pressure got very low very quickly. My skin was terribly fragile, especially my bicep of my arm without the PICC. This is where the BP cuff was. My BP was taken I think, every 30 minutes. Towards the end of my 2nd cycle, taking my blood pressure was so painful that I would cry. My skin was abraded, cracked and oozing. I missed my 8th and 12th doses due to low blood pressure. Then I developed a high heart rate(190) and missed my 13th and 14th doses. My heart rate was brought down with medication. We weren't sure what caused my heart rate to get that high. I ended the 2nd cycle with some flair when I pulled my PICC line out in the middle of the night. That caused more than a little excitement for me, Kelly and the nursing staff. We spent 8 days in the hospital for the 2nd course. I had 10 infusions of IL-2, I gained 50 pounds, my skin was in bad shape. The day is November 12th.
 
During this period I was very tired, my skin was peeling, my skin would itch terribly.
I had my first PET scan after treatment in December. Only 2 lesions detectable on PET, everything was shrinking. Great news it was working. I had another scan in January, nothing showing on PET, 2 lesions still visible on CT portion, but still shrinking.  IL-2 is still working. Dr. Margolin called and recommended another course of IL-2. I felt great. I had been working, exercising and enjoying my life. I was so happy and excited that my treatment was working. I we as ready and willing for more IL-2.
 
We scheduled an admit day of 1/30. This cycle started much last the first cycle of the first course. Same reactions. I received 5 doses then I missed the 6th dose due to low BP. I received 5 more doses and then my heart had been through enough. It ramped up to 230 bpm while laying in bed. Way too fast! It was also irregular. Everyone got involved on this day, it was pretty exciting. Or so I have been told. First I got 2 doses of adenosine, which is a short lived drug that temporarily stops the heart with the hope that it will restart in a normal rhythm. That didn't work. Next, The doctors attempted electric cardio version, twice. That didn't work. So I was given amiodorone, an anti arrhythmic drug. This worked, it took a while, but it worked. No more IL-2 for me this visit to 8NE. I had 11 of 14 infusions. We went home Sunday 2/5. Dr. Margolin called Tuesday and explained that she didn't advise another cycle of IL-2 due to my cardiac reaction. This was expected but distressing. I wanted to get all the IL-2 I could because it seemed to be working. 
 
In mid February, I had a cardiac work up including echocardiogram and cardiac MRI to evaluate my cardiac function and try to explain the arrhythmia I developed during treatment. The imaging studies showed a healthy functioning heart BUT there were 3 small lesions in my heart that could have been metastasis or inflammation. Most likely, the lining of my heart was as irritated as my skin and the electrical function was affected and/or impaired by this inflammation.
 
 At this time I was feeling pretty down. My Il-2 treatment, that was working, had come to a end. I found this depressing. I became reclusive and withdrawn. I was very tired, my hair was falling out, I would cry over anything, and everything.
 
I had a PET scan in March 2012. NED. I was one of the responders, a complete responder!!
 
I was happy but not elated, and I should have been. Within days I was diagnosed with hypothyroidism. Collateral damage from IL-2? Or amiodorone? Or was I genetically predisposed? Maybe/probably a combination of all 3? No matter the cause, a diagnosis of hypothyroidism explained why a person who survived cancer felt so terrible. Fortunately, hypothyroidism is easily treatable.
 
It was an absolutely crazy 6 months. At first it's unbelievable, devastating. Then, you see a glimpse of hope. A treatment that might work, if you're really 'lucky'. Then the tx starts working. Then it continues to work and then all the cancer is gone! For how long? Well, we're not sure, maybe a long time? Maybe forever?
 
I feel so fortunate to have had such a short, albeit painful and difficult, successful treatment.
 
I have come out relatively unscathed. I am surviving metastatic melanoma.
 
July 2012 I developed an ovarian cyst on my remaining right ovary. With my history, we couldn't rule out melanoma. So it came out. Fortunately, it was not malignant. However, now I enter iatrogenic menopause. Collateral damage from cancer. Now I'm on hormone replacement therapy.
 
It has been 2 years, I still have no evidence of disease.
 
My diagnosis was terrifying, my treatment was brutal! But survival has been by far the most challenging. Initially I felt almost paralyzed, absolutely preoccupied with fear of recurrence. I felt so happy to be disease free but equally afraid of my cancer coming back. Every pain, every headache every lump, or bump.  Is it back. After 2 years I don't think the thoughts are any different or happen any less, I just simply think I am better able to deal with them.
 
I am so fortunate. Without the love, care and support from my husband; who really was my personal nurse for about 6 months. I'm not sure I would have made it. Without SCCA and the UWMC the care I received, the treatments I had, the medications available to me, the dedicated, compassionate, and knowledgable providers, my specific treatment would not be available and would not have been delivered to me in such an excellent and effective way. We were so much more at ease knowing we were in the best healthcare situation possible. If there was something that I needed or treatment I should be getting, we got it at SCCA and UWMC. 
Thu, 2014-04-10

Comments

Jayjame - (5/9/2014 - 2:11am)

My dad just found out he has stage 4 melanoma. Doctor said the disease already spread to his liver and I saw a lot of spots in his liver that doctor can't do the surgery. I'm so worry. He went to seattle cancer too. He has only one option for treatment is ipilimumab. Doctor said that medicine only 10%-15% response. If the medicine respone, he can live 6-7 years. Any idea?

hdevlin - (5/21/2014 - 10:37pm)

I'm so sorry to hear of your Dad's  recent diagnosis. I don't know a lot about Ipilimamab. IL 2 was the first treatment option for me to be followed by Ipilimamab if needed. As you probably know, the response rate to IL2 is not high, around 5-20%. However complete responders can have durable, long term response (over 10 years).  My advice would be, listen to what the providers recommend at SCCA, make a decision that makes sense and go for it with everything you have with the intention of being that 10-15%. Hope that helps:)

Be Brave

evleye - (5/19/2014 - 9:53am)

Your story is so similar to mine!  Stage I survivor from 2006 to Stage IV patient in January 2014 when my troublesome ovary was removed--metastatic melanoma.  They also found thyroid cancer and I am starting IL-2 in a couple weeks.  I am hoping I have the same sucess you did.

hdevlin - (5/21/2014 - 10:45pm)

Wow! That is a similar experience. I'm so sorry to hear what you are going through.  Did you know your ovary was cancerous before removal? Do you have any other mets? Is there a separate treatment plan for your thyroid? I would be happy to talk more with you about my  IL2 experience and any other similarities we may share. This can be quite an overwhelming time. Are you being treated at SCCA? Sorry for all the questions. Our bodies and spirits are powerful and there are also some pretty awesome medications and healthcare providers to help us along this journey. If I can help or answer questions I would be so happy to try.

Be Brave

shanemcdonald99 - (5/30/2014 - 9:22am)

thanks for this inspirational story and I am glad that you are still doing well. You are very courageous to go through all of that ! It must have been very hard.

 

thank you

 

Shane