My story is quite long. We've kept a journal of everything on our personal blog at: https://www.harvster.com/cancer-sucks-metastatic-melanoma
I will try to summarize here the best I can... In late 2009 my husband noticed a mole on the back of my left arm that he said looked a little funny. I went to the Dermatologist. He looked at the mole and decided to cut it off and send it in for biopsy. The biopsy returned that it was Melanoma and the Dermatologist gave me a referral to a Plastic Surgeon saying I needed to have a large area around the site cut out. This was all very devastating news.
At the time we had a 3 year old and 6 year old. I had just celebrated my 30th birthday. It really felt like the whole world got turned upside down. Within a week I had the surgery and they also did the dye injection test to check the lymph nodes in my armpit. The biopsy on my lymph nodes came back positive with metastatic melanoma in three of them. So the Plastic Surgeon referred me to a Surgical Oncologist to perform a complete lymph node dissection to remove all the lymph nodes in my left armpit and chest.
After the complete lymph node removal the biopsy showed no additional cancer in any of them. I was then referred to a Medical Oncologist to discuss any further treatment to deter potential spreading. The local Medical Oncologist was pretty persistent about starting me on interferon. That was just what they did as a standard course of action. He said interferon had shown it helped my chances of not having Melanoma spread internally by about 10%. That didn't sound like a very good deal to me.
We ended up contacting MD Anderson Cancer Center in Houston. They set an appointment for the following week to see a Surgical Oncologist and a Medical Oncologist in the their Melanoma and Skin Clinic. At the Surgical Oncologist appointment he informed me that he didn't feel confident with the lymph node dissection procedure I had prior. He said that most Surgical Oncologist have a very routine process for lymph node removal that is more geared towards breast cancer patients. Which made sense due to the fact that a typical surgeon will see hundreds, if not thousands, of breast cancer patients to one Melanoma patient. He proposed undergoing another procedure to let him ensure every lymph node possible, and all tissue, was cleaned very extensively. I elected to go forward with the additional surgery and he did remove two additional lymph nodes and quite a bit more tissue. Luckily the two additional lymph nodes showed no sign of cancer. In the Medical Oncologist appointment at MD Anderson the primary topic was interferon.
I ultimately elected to decline receiving the interferon and just follow the observation routine very closely. The idea of taking a drug that pretty well promised to make me sick for a year and had such slim odds of benefiting me wasn't appealing at all. I completed all of my scans and follow up appointments at MD Anderson Cancer Center in Houston, Those appointments started with every two months and then expanded to once a year.
Fast forward 8 years... I was having severe abdominal pains. I was seeing my local general doctor and she was trying to determine if I had a stomach ulcer. She ended up not finding any evidence of an ulcer and gave a referral to get a colonoscopy and a scope of my upper GI. The next day the stomach pain was so terrible that my husband ended up making me stay home from work to take me to the emergency room. During a sonogram of my stomach the ER Doctor saw something and decided to do a CT Scan. The CT Scan showed too many tumors to count on my liver. We had always known the day might come, but you can never be prepared to hear something like that. This was on 4/17/18. The ER Doctor prescribed some pain medication and we headed home.
We were both in total shock. We took a nap and my husband woke me up a couple of hours later saying he was going to check our two sons out of school and we were heading to MD Anderson Cancer Center in Houston. It's about a four and half hour drive from our house. When the kids got home we all cried together and we explained everything the best we could. About an hour later we were on the road to Houston. We entered through the ER and about four hours later I was admitted to the hospital. Another CT Scan and and an MRI revealed I had lesions (tumors) on my liver, lungs, brain, and in abdominal tissue. I spent a total of about three weeks in the hospital among two separate stays.
During the first hospital stay I was started on ipilimumab and nivolumab. I did end up in the ER a couple of times in the month following, mostly because of pain and fear. I ended up only being able to stay on the ipilimumab for 3 doses because my liver started acting up and I had to be put on a steroid. I took a break from the nivolumab too and was able to resume it by itself after about 45 days.
The first follow up appointment revealed that some tumors were shrinking and all others looked stable! A month later the brain tumors were only showing remnants and everything was still shrinking with no new disease detected!!! That has been the trend for right at 12 months now. I am still on monthly infusion of nivolumab and my scan intervals are every 90 days.
I'm a school teacher and I returned to work the end of August 2018. It wasn't very long ago that someone with my diagnosis saying they would return to work in about 4 months would have been humorous, to say the least!