This is probably only interesting for me and others beginning an anti-pd1 trial. I had dose 16, trial week 56 on May 22. I am on a 30 week extended cycle (due to brain side effects) of either 2 or 10 mg/kg of anti-pd1. The trial is blinded so I am not sure of the dose. I requested a liter of saline along with my dose as it seems to help me avoid the immediate fatigue. Thursday they infused the liter over 90 minutes half before and half after the 30 minute Anti-pd1 infusion. 90 minutes of fluids seemed a little more effective than the previous 60 minutes when I try to get out earlier. I don’t seem to absorb the fluids as well with the shorter infusion. I avoided fatigue and other side effects until the weekend. Sunday (3 days post infusion) the fatigue hit like a truck. On Friday (8 days post infusion) I finally found relief (at least partial, I’ve stayed busy and needed naps.) Today (Sunday June 1, 10 days post infusion) my neck rash has begun. Other contributions to the fatigue may have been travel just before treatment, the first week of summer break for my kids and my first massage on Thursday (7 days post infusion) which caused my typically tight muscles to be quite sore!
On Friday night you are reading ASCO (American Society of Clinical Oncology) melanoma related Abstracts on your laptop
With these books beside it at the ready
•The Tales of Beedle the Bard by JK Rowling (Potter fan)
•Small Steps by Louis Sachar (former teacher geek out)
•Missing Microbes by Martin Blaser (NPR recommendation by hubby and BFF)
•Doctor Jenner and the Speckled Monster- The search for the Smallpox Vaccine by Albert Martin
And you have a small legal pad containing a list of things to do to improve your SEO and blog post ideas.
So, if your Friday night looks like this, you might be a cancer geek. Or just geek in general.
A few weeks ago I was invited to meet with some of the team at GlaxoSmithKline (GSK) about melanoma awareness and how they can better serve the melanoma community. This sounds like a first of it’s kind meeting between a pharmaceutical company and patients. I jumped at the opportunity to travel to Philadelphia (and escape the heat and last week of school mom duties for a few days.) I got to hang out with some of the friends I’ve made through my online support group, rub elbows a bit with GSK employees, and meet representatives for four melanoma non-profits.
Bloggers (L-R): T.J. Sharpe, Anna (our GSK organizer), Steve Martin, Jen Martin, Erin Youngerberg, Rich McDonald and me!
This was my first trip ever flying by my lonesome! I’m a real grown-up now! I arrived in Philly Sunday evening and was picked up at the airport by my sweet friend Ashli. She and her sister took us (and generously allowed some of the melanoma blogger crowd to come along) to the original Tony Luke’s for must-try-while-in-Philly pork sandwiches and cheese steak. Not being a huge meat fan, I was pleasantly surprised that I enjoyed both! I can’t believe we forgot to take photos of ourselves! Boo hiss.
My first cheese steak! (I made it though about a third of this!)
Monday morning, we headed to GlaxoSmithKline for the Melanoma Summit. I walked over with Jen and Steve. Jen is much better at documenting life through photos, so she suggested we take photos outside the beautiful building. Apparently we looked suspicious because a security guard came outside to welcome us with a bit of harassment about why we were taking photos. We are TROUBLE, I tell you!
They knew I was trouble BEFORE I walked in!
Once inside, we had to be checked by security and have badges made with our pretty pixeled faces on them. We met up and had a lovely lunch with some of the GSK staff. It was nice to informally chat and get to know one another before we headed into the more formal meeting.
Hanging out before lunch!
We then went into our more formal meeting time. I was so excited to see an additional couple friends joining us by webcam! I may have made a fool of myself right away waving and yelling hello to them. 🙂 We began with introductions of each person and our relationship with melanoma. We listened to some talks by GSK doctors on their philosophy of oncology research and the newest and exciting area of genetic research and treatments. (I am hoping to post more about this based on my tweets and resources we were given- stay tuned!) Next was a panel discussion about how best to effectively communicate and educate patients and the public about melanoma and sun safety. It was very interesting and encouraging to hear the different perspectives and passions within the melanoma community! It was also amazing to be in a room of people with passion, energy, and HOPE to give back to the melanoma cause and help prevent others from our nightmare!
Caught during the meeting asking Rich to decode an acronym for me!
I did have one moment when I was “called on” during our discussion time where I blanked and fumbled for words, but overall, I felt that I communicated and kept up well. I still struggle with some aphasia and memory issues after brain radiation and meningitis. I’d been quite worried about following the discussion, live tweeting AND participating in this panel without my head exploding, but I ended up being pleased and proud at my ability to keep up. Thank God for answered prayers and thank you to those who were praying for my neurons and nerves! After the meeting, we went on a tour of the AMAZING GSK facility. The inside of the building was far-out. Glass interior walls, all open-concept work areas and large colorful cubbies for people to store their personal things. It was all clean and shiny and beautiful. It’s designed to be eco-friendly and was just an amazing space to experience.
Group photo of all involved with the Summit!
After the tour, a few of us headed to dinner together! So fun! I can’t tell you how nice it is to finally meet some of these people I have shared my heart and life with through the highs and lows of melanoma. Together we have celebrated good scans and mourned side effects and bad news. We’ve added new warriors and lost friends. It was SO good to talk in person and acknowledge the kindredship we have online is a real thing.
Dinner with now “real life” friends!
On Tuesday, we took our time getting out of the hotel. Jen, Steve and I had build a day into our trip for touristing! We headed to Redding Terminal Market for lunch and exploration. We then went and explored the Independence Hall area. I geeked out about the sites and shared WAY too much with Jen and Steve about the musical 1776, a yearly movie tradition, nay obsession, in the Douglas family. We got photos of the Liberty Bell, poked around Carpenter’s Hall, visited Ben Franklin’s grave and found touristy shops to grab some souvenirs for our kiddos. And of course some fabulous selfies of Jen, the selfie queen! We then headed to the airport for a bittersweet goodbye. I was ready to be home with my family, but I realized the importance and authenticity of the relationships I have built in my online support group. It was SO good to meet in person and realize that connection. Special thanks to the Martin’s for allowing me to tag along and never making me feel like the third wheel on the trip! Jen, thanks for letting me steal all your photos! I miss you all already and can’t wait until we meet again.
Sad Jen and I parting ways headed home to Texas and Arizona!
*GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines. This post is voluntary, represents my own views and I was not paid to write it.
Anti-pd1 Dose 16, Trial Week 56 (I wrote this on the way home from my appointment last week, but didn’t get it posted. I’m much too lazy to go back and change the tenses, so pretend you are reading this last week!)
Great appointment today at the cancer center. Started with requesting my favorite nurse to check my port placement. It had caused some issues at my last appointment, but it was confirmed as caused by an inexperienced nurse, not port issues! Phew!
My labs looked good. My LDH (a tumor marker in blood) has officially been in the normal range for two months now! It continues to steadily go down which feels incredibly victorious!
I saw my nurse practitioner and discussed upping my SSRI (Lexapro) as expected (the dose usually needs upping after 4-6 weeks.) This fits my normal pattern. I’ve been on SSRIs for post partum depression, again for interferon (my first melanoma treatment) side effects, after I was diagnosed stage 4 and now again. It probably now something I will stay on forever. I am very comfortable that I need this due to brain chemistry issues and not some moral or spiritual failing on my part. {Soapbox} I feel it is important to bring mental illness discussion into the light and out of a place of fear and condemnation. {/Soapbox}
I also was having some left flank pain which worried me because it felt so similar to flank pain I’d had with subq (under the skin) tumors on my right side. No worries though, it’s just a muscle spasm. I am scheduled for massage next week if I can’t get in before that.
Infusion went fine. Got to catch up with a friend and his caregiver I’d met in our local support group. Requested IV fluids since they seem to help with my fatigue. I just can’t seem to drink enough ever to keep myself hydrated.
My only other anti-pd1 side effects are a slight rash around my neck and on the back of my hands.
Not a bad morning at the cancer center! Now to go celebrate my new 3rd and 4th graders since today was their last day of school! Yippee!!!
Melanoma and Skin Cancer Awareness Month is winding down with the end of May and today is the last day of school for my kiddos! This summer break we plan to do lots of swimming, playing soccer in our backyard, and geocaching. It will involve lots of time enjoying the outdoors in our beautiful desert home.
When I was first diagnosed with melanoma, I was afraid to be outside in the sun. With time and practice I have learned with a little thought and planning I can enjoy outdoor activities and still protect my skin! This is also the time of year I am purchasing new sunscreens for the summer.
Today, the Friday before Memorial Day weekend, is designated as “No Fry Friday.” A good time to do a little sunscreen and a sun safety reminder. So, if you are doing your summer sunscreen purchasing right now like I am, here are a few things to keep in mind as you consider what to buy.
SPF 30+ Sunscreen needs to be SPF 30 or higher to be effective
Broad spectrum Make sure your sunscreen protects you from both UVA (aging) and UVB (burning) radiation from the sun
Reapplication Make sure to apply generously and reapply according to the directions on the bottle
UPF clothing and hats as well as sunglasses provide additional and necessary protection when outside!
Horray for UPF swimsuits and sunglasses!
I am often asked my opinions and recommendations on sunscreen products for children and adults. Whole Foods is a good place to locate mineral based sunscreens free of nano particles and potentially dangerous chemicals like oxybenzone. I wrote about my concerns about oxybenzone in my post FAQ2: How to Evaluate a Sunscreen.
Whole Foods Market Sun and Skin Care Section
Beginning tomorrow, Whole Foods is offering 30% off Sun Care Products from May 23rd thru 26th. The family and I went to Whole Foods on Speedway to check out their selection for you.
Abby models the smooth texture of Devita sunscreen.
DeVita sunscreen rubbed in quickly with no white residue!
For my very local friends, the Whole Foods Market Oracle store remodel is due to finish and reopen at the end of August. Yay! You can follow all Tucson locations on Twitter for updates! Stay tuned for upcoming reviews of other sunscreens we tested out today. We found a few great new brands and one we’d skip! Enjoy your Memorial Day and don’t forget your sunscreen!
Thanks to Whole Foods for offering my tired children a sample without even knowing I was writing a review!
Not an ad. I purchased this product on my own dime. The link above is an Amazon affiliate link. If you buy with the link, I get a very small percentage of what you pay to help offset my review costs. I only review sunscreens which I would use on my family and myself based on basic requirements such as broad spectrum and a minimum SPF of 30.
Reading messages from other melanoma warriors during the Pass the Parasol campaign.
A guest post by my sweet daughter, Abigail Bishop, age 7. I didn’t edit her writing. She refers to “mela-no-mas” because of our melanoma walk team name. We just don’t have the heart to correct her because it’s so stinking cute! I also love that I asked her to tell me “what it’s like when your mom has melanoma.” She came up with the term “my experience” all on her own!
My experience with having a mom with mela-no-mas is very scary because i think she will always have mela-no-mas. I really hope my mom stops having skin cancer. My mom has skin cancer because she had a mole that changed on here back. To avoid skin cancer you have to get skin checks once a year and if you see a mole that changed tell your doctor.
Art Abby made for me after the melanoma walk. Nov 2013
When Mom has melanoma your friends will come walk with Team Mela-no-mas!
I am always sunsafe on safari!
Even if your mom has melanoma, she still might take you on your first trip to Tiffany and Co to try on jewelry!
May is melanoma and skin cancer awareness and prevention month. The melanoma community is working to do some wonderful things for education and awareness. Last year I was blessed to have many people honor me by wearing black on melanoma Monday and it felt so good. This November at the annual local melanoma walk I had a large team of family, friends and co-workers supporting Team Mela-NO-mas. I feel like after almost five years of this journey, people are understanding melanoma better. They know it’s not “just” skin cancer. It first invaded a mole, then my lymph nodes, then my lungs and even my brain.
At this point, I am healthier than I have been in years and have real hope that I have a long future dealing with melanoma in more of a chronic disease relationship than a fatal disease. BUT that does not mean that I haven’t narrowly avoided a death sentence and may very well end up fighting for my life again. This fight has changed me in ways I never thought it would. I’m not sure if I will ever be able to communicate them. Daniel and I joke that I am “past my expiration date.” And boy am I thankful for that!
But this journey has left me restless. I am still frustrated that people close to me don’t “get it.” I see friends who have walked this journey at my side not wear sunscreen or complain to me about tan lines. It’s pretty obvious when I go to the park with them and they put sunscreen on their kids (just because I’m there) none of them are in the habit of applying it daily. Celebrating tans or complaining about tan lines developed on vacation is like rubbing salt in my wounds. And while I try to find peace with their choice, to be honest, it feels belittling to my journey. There ARE things they can do to protect themselves and their children from this disease and when they don’t take those steps, it’s tough not to take it personally.
For all my frustrations, there are people getting the message. I do have friends who diligently slather sunscreen on their kids and themselves daily. I have friends who have stopped tanning because of my story. I have friends who have had skin checks and avoided a late stage diagnosis like mine.
This month there are some wonderful campaigns going on. There are clever slogans and moving videos. I will be sharing many of those. Many of my fellow warriors are sharing their own stories. But this year, I’m not asking you to wear black for me. I’m asking you to learn from my journey to hell and back. Change your habits. Protect yourself from the sun. Check your skin. Check your kids. Make a derm appointment. Work to change your perception of a healthy glow to undamaged and protected skin. Try a new sunscreen to make it easier to wear. Do one thing for YOU and your family. I’ll wear black for me. If you wear black, do it for you, but don’t make that the only thing you do.
One year ago today, on January 23, 2013, Danny took me for an MRI which we thought was going to be a breeze. I needed it to qualify for a new clinical trial testing Merck’s Anti-pd1 drug which was showing VERY promising results. I was set to be the first patient at my cancer center on this trial. Emotionally, we were feeling very positive at the possibilities offered with this new trial although we were a bit nervous about ending up in the chemo arm of the trial. I felt good after the MRI, so my sweet husband took me to Jerry Bob’s for breakfast.
One year ago today, just as we were finishing eating, my cell phone rang and it was my trial nurse coordinator asking if we were free to come in to sign some paperwork she had just figured out we needed to fill out. (Liar, liar, pants on fire! We won’t fall for that trick again!)
One year ago today we were ushered into an education room where my nurse practioner (my oncologist was out of town this day), trial nurse and oncologist’s nurse sat us down to tell us the MRI had shown two tumors in my brain. I needed to treat these and would not be eligible to begin the trial.
One year ago today I had a meeting that afternoon with Dr. Stea, the head of radiation oncology at UAMC to plan the Steriotactic Radiosurgery I would have within the week which would use seemingly Star Trek lasers to kill my tumors from the inside out with just one treatment. We also planned for me to also began two chemotherapies (oral Temedor and Avastin) the very next day.
One year ago plus a few days, I responded beautifully to the treatments and got into the trial I originally hoped for just a few months later than we planned. And although my immune system attacked the dead tissue in my brain this September and 2013 seemed to be the year of brain trouble, I have not had any new tumors, brain or body, since January 23, 2013! One Whole Year! The anti-pd1 trial has stabalized and is shrinking my tumors. I have been on this treatment longer than any other I’ve attempted (excluding the year long interferon treatment I did when first diagnosed.) We have so much hope that this stability will continue.
One year ago today was probably the scariest day of my melanoma journey so far. And although the emotions of this journey continue to be a roller coaster, I am a walking miracle today with stable disease. God has been good to us. God would still be good if I had died 6 months or even 3 years ago. He would still carry our family; but we are very thankful for our sweet family of four being able to hike this weekend and enjoy the beautiful 80 degree Tucson weather in January! Thank you for those who have stood with us in prayer and friendship.
“Everyone hates steroids and you just have to tough them out.” seems to be the theme I hear from doctors and other patients these days. Perhaps I have been whining too much! Oops!
Today was my every 3 week appointment for my clinical trial. I started by being called back to have labs drawn within 2 minutes of checking in! This NEVER happens! I have a port-a-cath in my chest into which they put a needle to draw labs and give me IV treatments. The needle stays in for my appointment and I have it removed after I am finished with all my appointments and treatments for the day. It saves my arm veins from multiple sticks as well as prevents damage and pain to my veins with some of the tougher medications. So, I see a RN rather than a phlebotomist for labs which takes some time with steralization of the site, removing the numbing cream, figuring out which of the two ports is being accessed (my port is a dual lumen and both sections need to be regularly flushed.) And… I had a point to talking about my lab visit today, but I seriously can’t remember it now. See? Steroids suck. Oh well, here’s a photo of a port-a-cath to go along with my pointless rambling.
Next I was seen at the cancer center today by Lois, the wonder NP. I really like her. She is smart, kind, practical and didn’t palpatate my swollen belly out of mercy! I alternate seeing her and my oncologist. Lois watches me medically, but she also is a great help with helping me have the best quality of life possible. I have gained a significant amount of water weight (10lbs) in the past two weeks, plus an additional 15 lbs added from the two months I’ve had a ravenous appetite. Thanks for that, steroids! I think Lois knew palpitating my belly was a bad idea when she saw I had pulled out the ol’ pregnancy “rubber band the pants instead of buttoning them closed” trick for the day! Keeping it real here, folks!
The great news I got today from Lois is that over the next 10 days, I am changing to a lower dose steroid (I’ve been on Dexamethasone and am switching to Prednisone.) AND reducing my dosage until I am finished with steroids entirely!
I have not been allowed to take Anti-pd1 (the clinical trial drug that has been WORKING!) since the brain symptoms began in September and I have been on the steroid. The anti-pd1 revs up my immune system and the steroids work to calm it down, so they are counter-indicated. We WANT my immune system working on my tumors, just not going crazy on dead tissue in my brain. (insert joke about dead brain tissue and intellect here.) Assuming all goes well with weaning off the steroids, I should be able to have my 9th infusion of anti-pd1 on December 2nd! I am SO excited to get back on track with the trial and kicking melanoma’s ass! SO SO SO happy to have this plan in place and a light at the end of this brain mess tunnel!
Another example of my absent mindedness of late at the end of my appointment, it wasn’t until I got into the car and felt the port still accessed when I put on my seatbest that I realized I’d left the cancer center without returning to the lab to have the needle removed! Thankfully we hadn’t left the parking lot! Things like this have been happening a lot. I had a friend remind me I’d left a Facebook conversation mid-chat a few days ago and completely forgotten about it among other silly mistakes due to not being able to think super clearly. I cried this morning because I couldn’t find a medication and my bra. I am tired of being absent minded! SO, if I have not responded to something I should have or forgotten to do something or forgotten your last name at the melanoma walk, PLEASE forgive me. It is not because I don’t care. My brain just seems to have fallen out. If you see it, send it home!
All in all it was a really good appointment and day. Steroids suck, but I can see a finish line!!!
A couple prayer requests if God leads you to pray for me.
First, that my brain and body will cooperate with the steroid wean. Steroids are tough on the body and I’ve been on a fairly high dose for a good amount of time. Of course, I am hoping to get off these darn things ASAP, so prayers for a smooth transition are SO appeciated.
Second, that the Anti PD1 will kick back in and continue to work to reduce my existing tumors and prevent any new ones! I have seen some signs as the steroid had been reduced that the Anti-pd1 may already be kicking back in which would be incredible and not unlikely based on how it seems to work in other patients. Yay for Anti-pd1!
Third, that this brain swelling stuff will NOT return! We need my immune system working hard from my neck down on tumors in my body, but my brain needs to stay calm, remaining tumor free is good, but attacking tumors that are already dead and attacking with a vengance is something we’d like to avoid!
Fourth, that God would provide an excellent melanoma specialist for my cancer center. My oncologist is overworked and needs help! I’ve heard rumors they may be hiring someone soon so please pray for the perfect person to treat the many Arizonans who face melanoma and are treated at AZCC.
Thursday, October 31 was a wonderful, lengthy appointment with my oncologist. We discussed a LOT of things but what stuck out the most, and then my trial nurse repeated after he left was that I am currently “phenomenal.” This is somewhat paraphrases, but essentially my oncologist told me, “Two years ago, things weren’t looking too good for you and the median life expectancy at that point is 7 months (thankfully he didn’t mention that then!) but today you are doing phenomenally and I expect you to be my patient for a long long time.”
The next focus and goal for my treatment is continuing to step down the steroids and get back to infusions of the trial drug toward the end of November. In the meantime, I skipped a second infusion #10 because the trial drug would ramp up my immune system and the purpose of the steroid treatment is to calm down my immune overreaction in my brain (see auto immune meningitis post.) We also discussed a variety of options I have if I cannot successfully get off the steroid and have to leave the trial, but for now things look really great that I will be off steroids and back on anti-pd1 at the end of November. Happy birthday to me! I am honestly SO excited to get back to it! I was the first appointment of the day and it felt great to walk out of that building with good news.
Danny and I then had a lunch date and went paint color choosing for the outside of the house. I think we’ve decided so now we just need to write the check. Ugh! Our little house is going to look so nice, though!
I am in a wonderful group on Facebook made up of moms from the kids’ school. There was discussion about when the annual costume parade would be so I asked if someone would be willing to cheer as my kids passed and snap some photos because I knew I’d be at this appointment and miss. The kids came home full of excitement and both mentioned that a couple of the moms took pictures of them. I think they felt like celebrities! So sweet and such a blessing for my heart to know my kids were loved on after both expressed disappointment that I couldn’t attend their class parties. It’s tough to ask things like this sometimes because I worry that I might come across a) as an attention whore who is bringing up the cancer thing AGAIN or b) the conversation killer who is bringing up cancer again ruins the conversation about the times of parties and parades. I don’t mean to do either and my hope is that my friends know me well enough to keep moving in conversation and planning (while also doing what bossy pants me requested, of course!)
Danny and the kids carved pumpkins that night and went trick or treating. I was pretty tired and ended up having a focal seizure. I wasn’t on a therapeutic dose of anti-seizure meds, so I knew this wa s a risk. I was reading and all of the sudden the words turned to greek letters. I had no idea what they said. I was aware enough to call Danny over and verbally describe to him what was happening. It was odd but intriguing. Put a bit of a damper on the Halloween celebrations, but I think I will just up my seizure meds to a therapeutic dose and be fine. Call in to my neurologist and waiting for a call back.
