In September of 2009 when I was diagnosed with melanoma, Daniel and I met with a sun safety educator after my first doctor visit. I’ve lived in sun safety land for a long time, but this weekend when I was speaking with a group of girl scouts I was reminded that not everyone has the privilege of meeting personally with a sun safety educator. So, here is a quick reminder of the basics of sunscreen that I teach when I am asked to speak to groups.
Make sure it’s labelled “broad-spectrum” and at minimum SPF 30
Read the directions!
Apply 15 minutes before sun exposure
Use a lot, don’t miss a spot! Don’t forget the scalp, ears, neck and lips!
Sprays- Spray until you see it, then rub it in
Cover with clothing whenever possible! (Especially UPF clothing)
Technically I’m getting fluids here… but close enough!
Last Thursday (June 19th) I had dose 17, week 60 of the Merck MK-3475 trial drug. (AKA Pembrolizumab, formerly known as Lambrolizumab, anti-pd1, melanoma immuno-therapy, my miracle drug)
I had a CT scan and saw Dr. Cranmer last week for scan results, which looked fabulous. Everything continues to shrink! We spent most of the visit geeking out and comparing notes about ASCO (American Society of Clinical Oncology) Annual Conference and the melanoma conference I’d attended in May. Nice to just chat about shared frustrations in the need for patients to see melanoma specialists and not being given treatments in an order that seems logical (at least to us….)
This appointment, since we knew things were looking good, Daniel stayed home with the kids while I went to my appointment alone. Labs look great! My LDH has dropped again! I am well within the normal zone for this tumor marker in blood.
LDH Levels while on Anti-pd1 Trial. You can see when my immune system activated and a spike while on drug holiday.
I saw my nurse practitioner and the trial nurse coordinator. This was a quick visit since everything had been reviewed last week.
I headed upstairs for my liter of fluids and infusion. It was a quiet day in the research room. I did freeze sitting under an AC vent with the cold IV drip so I got my first heated blanket wrap in a while. Feels a little odd when it’s 103 degrees outside!
I went home and slept all afternoon which is unusual for me. Usually when I have fluids with treatment, I am not as wiped out. Perhaps the heat just wiped me out. Getting into a 130 degree car is probably enough to suck most of that liter of fluid right back out of me! The weekend was tolerable, although the post infusion thirst is insane. I also am fighting my usual rash and a slight headache. My one new symptom this month is dry eye and some slight redness since the infusion. It’s always an adventure, but SO worth it for amazing results!
“You should never apply a product labeled as flammable while you are near a source of flame. In the five incidents reported to FDA, however, the burns occurred after the sunscreen spray had been applied. The ignition sources were varied and involved lighting a cigarette, standing too close to a lit citronella candle, approaching a grill, and in one case, doing some welding. These incidents suggest that there is a possibility of catching fire if you are near an open flame or a spark after spraying on a flammable sunscreen—even if you believe you have waited a sufficient time for the sunscreen to dry and your skin feels dry.”
“For sunscreen spray products, the agency requested additional data to establish effectiveness and to determine whether they present a safety concern if inhaled unintentionally. These requests arose because sprays are applied differently from other sunscreen dosage forms, such as lotions and sticks.”
Perhaps we should avoid these products? I have used sunscreen spray a few times in the past couple months and I feel flammable for hours afterward and can’t get the alcohol smell out of my nose! Yuck!
I do think the lotion forms of sunscreen spray seem to avoid most of these issues. And in ANY case, any sunscreen is better than none. Don’t forget to read the directions and wait 15 minutes after application to give the sunscreen time to work! It also helps to spray until you see your skin is wet, rub it in and then reapply and rub again! If you are taking the time to apply, take the time to make it work for you!
I have been beyond blessed in my blogging journey to have been befriended (perhaps I just declared myself her friend? Shh… details aren’t important) by Becca Ludlum who documents her own life, tech love, and journey as a parent to tweens!
Becca is a mentor to me as a parent and a blogger. I especially admire and attempt to emulate her parenting approach of actively teaching her sons to use technology with supervision and parental guidance. Instead of shielding them until they are older as I am tempted to do!
I wrote the following review on Amazon after tearing through this book in less than a day. Now I just need to go back and carry out Becca’s tips!
I’ve been dabbling in blogging and reading blogs for almost 10 years. I’ve only recently become serious about my own blogging journey. “Everything But the Posts” is the perfect springboard for the next step in my journey. Becca Ludlum’s book is perfect for a blogging newbie, dabbler, or experienced blogger looking into the next phase of for their blog. Becca has great advice on setting up your blog, improving SEO, and developing a readership and community in the social media world. She even walks you through the process of monetizing your blog and provides examples of how she did this herself! I had to refrain from highlighting almost every paragraph. The book is FULL of easy to read and implement advice and I look forward to making over my own blog with it in mind.
I am lucky enough to call Becca a friend and cheerleader/mentor in my own life and am so glad she took the time to share her wisdom and experience with the world. If you have or want to start a blog, don’t skip “Everything But the Posts!”
Abby as a writer/blogger on career day. Note the book and pencil over her ear.
I bought this book because I couldn’t wait to read it, devoured it on Kindle and then after reading it, wanted a paper copy which Becca surprised me with in a gift of mailbox love. It arrived just in time for Abby to go to career day as a writer/blogger and take it as her prop. She’d just written her own post on my blog and was inspired!
Becca has also been an advocate for sun safety and melanoma awareness. She’s been a part of Team Mela-NO-MAS in the Tucson Melanoma Walk and shared my story on her blog in 2012. Check it out here!
Becca did not ask me to review her book here or on Amazon. I just love and wanted to share it!
Bloggers and GSK Staff at GSK Philadephia Headquarters
There has been interest expressed in some of the more specific information given at the GlaxoSmithKline Melanoma Blogger Summit. I will be the first to tell you, I have a horrible memory. I also missed much of a key component of the genetic testing portion of the presentation. This was the part I was most looking forward to, but I may have needed to run to the bathroom desperately at that moment and I may have gotten a little lost on the way there. The GSK employee who told me to turn right, then right again… well, he was NOT right.
SO, no guarantees that I will have the most eloquent synopsis nor the greatest grasp of what was presented, but with a little prayer and the notes GSK provided, I will do my best to pass on what we were told!
First, that this was more of a discussion format than a formal presentation of information about up and coming advances in the melanoma world. GSK genuinely wanted to hear from patients.
At one point in the discussion, they actually mentioned a clinical trial I failed out of back in 2010 (DERMA MAGE3) I got to look at one of their research leads and thank him in person for the rare opportunity to be in a trial as a stage 3 melanoma patient. That may have been the most poignant moment of the day for me, outside of meeting a few of my online support group friends “in real life.”
The bloggers
You can find info for the people who were involved in this meeting listed below in a PDF list and live links. Please note that Donna’s link within the PDF is incorrect. You can find her writing here!
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.
