Many of my melanoma friends (aka “mela-homies” if you tend to the dorkwad side like I do) reach a place where they take a photo of themselves holding a sign that says “NED” to celebrate scan results which show “No Evidence of Disease.” NED is the best it gets in late stage melanoma. There isn’t remission status because melanoma is too sneaky in returning.
Perhaps one day I will be NED, but I had a lot of tumors and they leave scar tissue and shadows on scans so it may be difficult for me ever to be declared “NED.” My scars just may be too numerous and deep.
But, I had a CT scan yesterday and got a call from my nurse today that my results were STABLE! This is the best we could have hoped for and worth celebrating! So here is to stable scans! My first stable scans were on Jan 27, 2014 so yesterday was my one year anniversary of stability. It is time to celebrate a year of stability!!! Hurrah!
Once upon a September and October, I began having a few strange symptoms with my Keytruda doses including weight gain that didn’t match my calorie intake, loss of pubic hair, some hot flashes. I mentioned them after discussing them with a nurse practitioner here. I had my estrogen levels tested and menopause was ruled out. Yay!
At my November appointment, my oncologist had taken a look at my symptoms and labs and diagnosed me with metabolic disorder. I certainly have a family history of these symptoms, although I don’t know if anyone in my family has actually discussed the overarching diagnosis of metabolic disorder with a doctor in the past.
My oncologist believes these symptoms are probably something that eventually would have been diagnosed with age, but the clinical trial medications or perhaps just the stress of this cancer journey have brought on the symptoms on a good 20 years early. Thankfully they are treatable and may not need medication but sweat therapy (aka exercise!)
It was after I finished with the doctor that my triglyceride levels came back from the lab and were high enough to rate a grade 3 adverse affect which meant I couldn’t get treatment that day. I came back the next day for fasting blood work which reduced my levels from 400 to 300, but not low enough to get me off the hook for a medication. I began meds and had beautiful blood work and dose 21 two weeks late on November 21st. It went without a hitch, thank God! Now I wait to see an endocrinologist to treat medication induced metabolic syndrome.
Yesterday, I was speaking with a counselor who is working with our family. As I explained some of our back story to her, I told her that when I was diagnosed with melanoma in 2009, my kids were 3 and 5 years old. I was 29. When I progressed to stage 4 a year later, my goal and focus was being here to get Abby through kindergarten. When I reached that goal my focus became to see the kids finish elementary school. After some big bumps in the road (brain tumors are BIG bumps) I began the clinical trial I am currently in. One day about a year ago after repeated good scans, I remember looking at Daniel and saying, “I’m going to see them graduate high school!” Today my hope is to see them married and rock my grandbabies.
Today, the FDA approved the drug that is saving my life. I am so excited and thankful for this medication and that is will now be available for my melanoma friends. The trade name announced today is Keytruda. The medication name is Pembrolizumab.
There are more anti-pd1 drugs being developed for multiple cancers which are literally changing cancer treatment and outcomes. What an amazing day to sit and take a deep breath and know that my friends now have access to this drug. History was made today.
It’s bittersweet as I remember MANY friends whom I have loved and lost along this road. From my diagnosis in 2009 to today, 5 new drugs have been approved for stage 4 melanoma. In 2009, the offerings and success rates were dismal. But, I also feel such hope for the future. For my friends currently struggling, for my friends who will be diagnosed in the future, and especially for my children. Today brings hope and joy!
Thank you God for the doctors, researchers, trial patients, nurses and financial donors who allowed this to happen. We have not yet won the war against cancer, but today was a big step as a new arsenal was made available to those on the frontlines.
This post was written on Aug 14th during my infusion. I didn’t get it polished to post at the time. That night was Parent Information Night at school. Joey ended up in the PICU the next day! Add recovery from that, some time the site was down and life in general and Anti-pd1 dose 20 is only 3 days away! I am on every 12 week scans now, which is a welcome break, so this post includes the results of those scans.
Today was my appointment for scan results and my next dose of anti-pd1. It was a long morning of waiting. I was quite nervous about my scans this go round. Lots of my friends are encountering major potholes and detours on their melanoma journeys and it caused me some fear that my lately smooth road might get bumpy. I am thankful for my success on this trial but heartbroken for those who I love who are struggling. Cancer is a horrid disease. Thankfully my oncologist told me I was his only patient who received good news morning. That certainly put the wait time into perspective.
So, things are good in Marthaville! My tumors continue shrinking and remain stable. So I continue pressing on! We had a fantastic storm while I was at the cancer center including some loud thunder claps and a good power brown out.
Stable! Shrinking! Storming!
My post infusion 30cc flush. (Other trial folks and I have noticed that this is delivered differently depending on our center. This syringe is added to my medication bag to make sure I get every drop!