I'm in the middle of celebrating my "cancerversary" - the 1 year anniversary of finding out that melanoma had returned and having surgery to remove it, and staying cancer free. I found out on July 26th last year (which happens to be one of my best friends' birthday!) that the cancer had moved on to my lymph nodes, and I had them removed on August 8th. Mid July of this year, I had my routine scans, which came back all clear, so at that point I decided I would go ahead and call it my cancerversary :)
At the same time as my scans, I had my 6th infusion of ipilimumab, and I'm happy to report that I have had no side effects! If I were in a blind trial with a placebo, I would definitely think I was getting the placebo! I have 2 more infusions to go, and I'll be done with that, hopefully never to visit the chemo unit again. I'm not sure how often I'll go for scans at that time, because right now I'm required to have them every 12 weeks at treatment time. I'll do whatever my doctor recommends, but I'm hoping to go a little less frequently by the time I'm finished with the trial; that will be almost a year and a half after my surgery (January 2014 will be my last ipi infusion, if all goes as planned).
Speaking of my doctor, let me brag on Mayo Clinic a little bit. I read a lot of blogs where melanoma patients go to really great cancer centers of excellence - FYI, if you have melanoma, you definitely want to see a melanoma specialist, that's basically melanoma 101. Something I've noticed about a lot of others' experiences is that they have to wait for hours after their scheduled appointment. I know it's worth it to them to see great doctors at great hospitals, but it's something I'm really grateful to not worry about at Mayo! For certain appointments like blood work and scans, I may have to wait a little while. But when it comes to my oncology appointment, I never have to wait long. This is especially great when I'm waiting for scan results, but it's nice any time. It's the same with my appointments for immunotherapy (the ipilimumab), and the dermatologist. On days where I have an appointment and plan to go to work afterwards, it's good to be able to pretty accurately say when I'll be finished and heading into work. They have really made my scheduling so much easier and I'm really appreciative of that. I highly recommend them.
So, all my news is pretty good. Unfortunately, there are plenty of others in "mela-land" who don't have such great news. The most heartbreaking is Addison of Addison's Army Against Melanoma, who is only 2 years old and was diagnosed with melanoma at 3 months old - it was passed through the placenta from her mother, who passed away when little Addison was about a year old. Addison has been doing so well, but as of yesterday, her Facebook page was updated to say that she has a brain bleed and there is nothing more that can be done for her. I've never met Addison or her family, never spoken to them, but my heart is so heavy for all of them. I suppose the blessing is that for Addison, she does not comprehend what is happening, but I cannot imagine how gut-wrenching this is for her family, who have already endured the loss of her young mother (Addison's mother, Briana, was only 33 when she passed away). Certain stories touch my heart more than others, and this is one of them. Please visit their website or their Facebook page to learn more about this family.
Addison is one person, although one extra special case, but there are others who are finding out they have new tumors, that their treatment isn't working, that their insurance won't cover the drugs they need, and the list goes on and on and on. Some of these people have melanoma in their genes (like me), some of these people have melanoma caused by too much sun exposure (probably also me), and some of them don't have any obvious reason to have gotten melanoma. We're closing in on the end of summer (although in Florida, our summer goes well into the fall), but there's still time to practice sun safety. I used to hate to hear this sentence, and I still do, but the truth is, THERE IS NO SUCH THING AS A "SAFE" TAN. (unless it comes from a bottle, and even then there's issues with chemicals, breathing in sprays, etc, but it's definitely better than the sun!). I don't think we should hide from the sun, everyone who knows me knows I love a Sunday Funday out by the pool, but you can wear hats, UV protective clothing (which I think is great for kids to cut down on the amount of sunscreen application they have to endure), and of course, sunscreen. Lots of high SPF sunscreen, applied every 2 hours or so. If your skin gets tanned, it is damaged. If it gets burned, it's REALLY damaged. Please, protect the skin you're in, and protect your kids' skin too. A few sunburns doubles your chances of getting melanoma. And if you're a woman, and have babies in your future, it could not only be your health in question, but your baby's as well.
Of course, you can't guarantee that you won't get melanoma or other skin cancers just by being safe in the sun, so the really important part is to visit your dermatologist for a full body skin check once a year, and keep an eye on your freckles and moles, watching for changes and immediately have any suspicious spots biopsied (with a punch biopsy, no shaves!) and sent to pathology. I can't even stress how important that is, so many doctors have dismissed a funky mole, only later to find out it was skin cancer. If it bugs you, get rid of it. If your doctor won't listen, find a new one.
Alright people, I've rambled on long enough! Thank you for reading this far :)