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!
Five years ago today I was diagnosed with melanoma. The phone rang while I was sitting at the kitchen table creating picture labels for dresser drawers with Joey and Abby. I had NO idea what was coming or what the diagnosis meant. Joey was 5 and Abby was 3. I had Danny come home that day at lunch to cry on his shoulder in fear. I knew melanoma was “the bad skin cancer” but not much else.
It’s been five years, seven surgeries, six biopsies, ten treatment approaches, nine chemotherapy and immunotherapy drugs, tumors come and gone through treatment and surgery and two years of dealing with brain tumors and their aftermath. We’ve come a long way, baby! And I know a lot more about melanoma and its treatment now.
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.
I felt so great after my infusion of anti-pd1 therapy on Thursday! Came home and enjoyed the family and got some chores done. On Friday I stayed busy and had a girls night out with some of my besties. This morning, three days post infusion, I felt I’d been hit with a ton of bricks. I saw the signs coming last night, drinking tons of water but it wasn’t absorbing. Then at one point while out with friends, I felt fatigue and a bit of light headedness wash over me. I also didn’t finish my gelato from Frost- a sure sign of impending doom! Once in bed, I realized my leg that swells with lymphedema was very swollen.
So, I shouldn’t have been surprised when I woke up swollen, sore and exhausted! I slept most of the morning and more this afternoon. I’m so glad Daniel is home to carry the load. He takes such good care of us. The family is out on a walk and I am still resting. This is the new normal and I wonder if it will ever really feel normal. I am so thankful that most days now are good days so the bad ones stand out!
It’s been a month and today I’m back for anti-pd1 cycle 18, week 64! No stripping today, sorry folks.
I’m currently shivering under my blankets in infusion room. Brr! The liter of saline makes me chilly! Of course, there is a “popsicle patient” across from me (TH-302 trial) with ice packs in his armpits and groin. He’s also sucking on ice chips. I’m going to keep my mouth shut about being cold! It’s all about perspective!
“Welcome to$uhe University of Arizona Sancer Center N Campus”
I had to laugh at my pager this morning. I doubt this is the message the cancer center wants to send about their competency! Good thing I am an experienced patient and know this is not a reflection of the care!
I had a brain MRI yesterday and it looked good! My trial nurse went out of her way to call me with results yesterday so I didn’t have to face the anxiety waiting for my appointment today. I’m thankful for her understanding heart.
Assimilated. Resistance was futile.
Today’s labs included another to-do about how tiny my dual port-a-cath access is and how deep the bottom section is to access… it needs a longer needle… blah blah blah. It’s interesting how much nurses vary in their assessment of my port. I am learning which hills to die on with port access, but when to let the nurse’s instincts and concerns lead the way. A longer needle has never really been necessary, but if they feel more comfortable with it, I’m not going to argue. It does seem to cause trouble if I lie back and they try to access the port. I believe this is because of tissue moving when I’m reclined which interferes with the port access. So, I request to be upright when it’s accessed!
It did eventually get accessed, the seven tubes of blood drawn and after giving a urine sample-which prompted a tweet to the cancer center about needing a hook on the bathroom door, I was on my way! (Imagine me, laptop bag, coffee and urine sample cup in a room with no shelves nor hooks. Wait. Don’t.)
I saw my nurse practitioner for a straightforward visit. Discussed allergy meds and she said my nose is a little inflamed with the new dog. Doh! She recommended an over the counter nose spray. Allergy meds will not interrupt my immune system. She explained the histamines they treat are not part of the cellular immune process which fights cancer. Oh college Martha, you should have taken cellular biology!
I’m now finishing up my liter of fluid and about to get my lovely anti-pd1 (MK-3475) Then I’ll be out of here! Dose 18 done! Hi-yah! Take that melanoma!
Ready to have my port accessed, labs drawn, doctor check in, and infusion! Watch out cancer, here I come!
