New FDA-approved melanoma drug tested at UA Cancer Center | University of Arizona Cancer Center.
I had the opportunity to speak with the woman who wrote this piece today. I feel so blessed to have cutting edge care in my backyard! At the hospital where I was delivered, no less!
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.
For more information about Keytruda, see Merck’s Press Release.
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!
Today was my six month follow up with the neurologist about my seizure meds. I had two things I wanted to discuss with her today. One is my daymares which are vivid and I often can’t wake from despite repeated false awakenings in my dreams. This may be caused by the Keppra I am on due to focal seizures. Although it would be unusual for it to cause new symptoms after a year. So, after some discussion about my variety of medications which may be the root of these symptoms, we came up with two plans.
Plan A is for me to reduce my Ambien dose to the new FDA recommendations for woman (5mg rather than my prescribed 10mg.) And go back on brand name Keppra just to be safe. Generic meds have the same primary ingredient as the name brand, but filler ingredients don’t have to be exactly the same. So with medications which affect brain chemistry, my neurologist is more comfortable sticking with brand name when insurance cooperates!
Plan B is to reduce my Keppra (seizure med) dose from 1000mg XR to 750mg XR daily if plan A doesn’t work.
My other question for her was about my frustrations with expressing myself. I tend to be a grammar stickler, but despite repeated rereadings, I am overlooking simple misspellings and misused words in my writing. It is embarrassing and frustrating! I have noticed that in the past year my verbal aphasia has improved significantly, so we are hopeful that my brain will continue rewiring around my necrotic (dead) tumor sites. Speech therapy could help or playing some of the brain games online. We do know that my seizures affected my communication and reading so it makes sense that these areas are the slowest to recover. In the meantime, I shall consider blogging therapy and continue begging forgiveness for my grammar mistakes. It’s all a part of the journey. Isn’t cancer grand?
I have one super happy family! Check out Daniel’s story of the adoption!
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!
My infusion chair had a lovely mountain view
The group infusion rooms at Arizona Cancer Center hold four chemo La-Z-Boys, one in each corner. I was sitting on my side of the room during a recent visit and overheard the husband of a new patient asking the chemo nurse about a port-a-cath for his wife.. He was asking where they were placed and for details about surgery to have it placed. (For some reason my inclination is always to say my port was “installed” rather than placed. We are Borg, prepare to be assimilated!) He asked about the benefits and care for the port.
The chemo nurse kindly gave him great information, but sometimes it’s good to hear from another patient. (And sometimes I like to hear myself talk!) So, as this sweet couple in their late 60’s get up to leave her first infusion, I pipe up and get the husband’s attention. I told him that from my perspective, a port-a-cath can really make treatment easier and it’s saved my veins, which were building up scar tissue before I was even diagnosed with cancer. I asked if he wanted to see what it looked like. He was grateful for the input and said sure, he would be interested.
The wife is in the bathroom now, so I am only interacting with this gentleman. At this point, I look down and realize I am going to have to unbutton my henley and pull it down. I know I won’t be exposed, but it won’t appear that way to this man. I look over at Daniel, he raises his eyebrows at me, then I carefully unbutton, and show off my port! Anything in the name of advocacy!
It was worth it. I remained clothed (somewhat) modestly and the man and his wife thanked me for the perspective. Cancer is scary! We have to share our stories!
Here’s another post I’ve shared about my adventures with my Port-a-cath!
“Play is often talked about as if it were a relief from serious learning. But for children play is serious learning. Play is really the work of childhood.” – Fred Rogers
Not pictured in our summer school curriculum: swim, Mr. Roger’s Neighborhood marathons, weekly movies, lunch with Daddy, making jello, crafting, and going on playdates. We love summer!
Chemotherapy shown to affect memory in young cancer patients
Well, I could have told them that!
I submit, as evidence, my Facebook status from July 2.
Oh. My. Word. Today I realized I forgot an important errand yesterday so rushed to do it this morning, forgot I’d invited my brother and girlfriend over for dinner until 45 minutes prior, locked the kids and myself out of the house on the way to the pool and left the back gate unlatched while dog sitting so the dogs got out of the yard. Thankful for the end of the day and grace from family. If anyone sees my brain, let me know!