BENEFITING: MELANOMA RESEARCH ALLIANCE FOUNDATION
Maria Marin; a beautiful happy girl who was diagnosed with melanoma in January of 2013. The origin was a mole on her lower back which she noticed but ignored for a couple of years at least. A brief summary and some points she would want to share to perhaps help someone else in the same situation and get her story across. January 24th 2013 - surgery to remove the mole as well as the sentinel inguinal lymph nodes; the right was positive for Melanoma February 28th 2013 - it was strongly recommended she undergo lymph node removal in the right leg/groin. She agonized over this decision before and after the surgery. She finally agreed to have 9 lymph nodes removed from the site (less than suggested) She often said it was the cause of what came later. She said it made her immune system weaker....no way to really know, but she really struggled with the issue and was adamant that if given the chance she would not have undergone this surgery. All removed were negative for melanoma but as a precaution she was advised to go on Interferon and chose not to considering the low benefit % and high toxicity and also because at least apparently, she didn't think there was anything to worry about; though any doctor who saw her original biopsy diagnosis (classified as stage 3C), apparently knew better and feared worse. Memorial Day Weekend 2013 - she was hospitalized with what seemed like an infection (it had happened twice before after the surgeries). This time though she was diagnosed with "in-transit" melanoma near the original site; the beginning of the real nightmare. July-August 2013 - she was hospitalized twice for 5 days at a time to undergo Interleukin-2 treatments (14 bags each time). The first round she completed 13 out of 14 doses and 10 out of 14 during the 2nd session...a true champion; most adult men don't go past 8 bags. I witnessed the trying side effects and she muscled through them and I can honestly say it was impressive; unfortunately no improvement after these sessions. September 2013 - March 2014 - She was able to enroll in a trial study in Tampa (Moffit Cancer Center) and received Yervoy and PD-1 Yervoy consisted of a total of 4 treatments every 3 weeks, while PD-1 would follow with 6 treatments every 2 weeks. The treatments themselves consisted of a lot of blood drawing for tests and then about a 2 hour injection...per-se fairly simple. But, as things progressed the trips soon became a sad challenging ordeal themselves; she was very thin and weak and the huge amounts of blood-draw really bothered her and rightfully so. Apparently for the sake of these trials, they will compromise overall health as she would then often undergo transfusions before the treatments....so blood out, then blood in then treatments....not really logical. In November-December she did undergo radiation treatments for a few weeks, and though she had asked Tampa for permission, the disorganized/careless or at best inconsiderate nurse/oncologist there made her go up on the date of the 4th treatment of Yervoy and refused to administer it saying they couldn't since she had undergone radiation; again, never mentioning this when she asked for permission. I reiterate the trip alone was a 4.5hr drive each way which was beyond taxing on her in her condition. The attitude of the nurse and the oncologist in charge of the study were rude and inconsiderate beyond reason from the very first meeting; I witnessed this first hand and Maria was truly upset by them. I will stand by the fact that those two individuals don't possess the sensitivity to serve fast food to healthy individuals, thus making them utterly inept to deal with the responsibility they are given. Maria dealt with many health care professionals during the 15 months this ordeal lasted; she never encountered two individuals like that and they compounded the stress she was undergoing tremendously and it's a true shame to see two "professionals" act that way for absolutely no reason. One of the most ridiculous things in this story ? The same trial/treatment was being administered at Mount Sinai Hospital, literally less than half a mile from Maria's house; she could literally walk there, and even in her latter condition this would have been easier than enduring the trips to Tampa. Yet because of the bureaucracies involved, she had to endure some 20 odd trips to Tampa which in her condition were absolute torture; all for basically a two hour treatment. Hopefully one of the powers that be will become aware of this and make sure that it never happens to anyone in that condition again and exceptions are made to accommodate such a situation. March 12th 2014 was her last trip to Tampa for evaluation after the PD-1 treatments; they were deemed ineffective and the Melanoma had metastasized all over. Back in Miami she was told by every oncologist she saw that there was nothing they could do, or as a token "some Chemo" was offered...but she was already too weak for that. She was scheduled for a "gamma knife" session to remove the one tumor in her brain but a couple of days before she was hospitalized and deemed too weak for it. Scientifically/rationally, she thinks tanning beds from a place she used to work at when she was younger may have been the root cause; she remembers getting burned in her lower back only during the sessions.....that's where the original mole developed. She had it for a couple of yrs and in passing would say she should get it checked out....she never did until it got ulcerated and grew larger within a couple of weeks at the end of 2012. She would want everyone to know that it's unbelievably foolish to use tanning beds, or to simply "bake" in the sun. Make sure you get your skin checked by a dermatologist at least every 6 months. If you have a lot of moles, "Mole Mapping" is a few hundred dollars IF your insurance doesn't cover it, and it is WELL WORTH IT as it will help your dermatologist to easily spot mutations and "nip things in the bud" before it's too late. This is not a cliche' recommendation; if you ever get a glimpse of what Melanoma actually is, you will be diligent and paranoid. Trust and don't procrastinate on this! Maria loved life and would want everyone to enjoy it safely and prevent the unbelievable hell she went through. Having been near her, I assure you that Melanoma is not simply "cancer"; it's a monster that will turn into a physical and psychological nightmare and true torture. Ask anyone in the medical field and they will clearly tell you that there's no worse disease, or at least cancer....any other diagnosis is pretty much welcome news compared to a Stage 4 melanoma diagnosis. Melanoma becomes cancer of the bones/brain/liver/lung/skin etc...therefore it's almost all cancers into one....not "simply skin cancer" that you can remove in an doctor's office. Once the storm began, day to day events made it very confusing/scary/blurry to make decisions outside of the norm/western tradition. Maria began to seriously practice Soka Gakkai Buddhism; people in that Discipline who knew her for mere months helped her out day to day more than people she'd known her whole life and that was truly touching and she was so grateful for that. We talked about hardcore nutrition changes and even the holistic/natural clinics in Mexico etc. who get mixed reviews; in hindsight should have pushed for that a bit harder. Maria was always very healthy; amazing physical shape with rock hard abs and ate very little/no meat and did get stricter with her nutrition but probably not as much as she would have liked in hindsight. If you're ever in that situation, aside from pursuing Western methods, do give a hardcore change in nutrition a try and stick with it; it can't hurt and I know Maria believed in it though again with everything happening and the uncertainties/fears perhaps some focus was lost and that's one thing I wish perhaps had been different. Also, hemp oil treatment was started unfortunately in the last few weeks; again it can't hurt and if you're in the situation, I would suggest starting that very early on. Don't let fear or the norm paralyze you; it's overwhelming to read all the potential treatments out there, but aside from medical opinion, also pursue things that make sense even if you're not sick; as a matter of fact Maria would stress to anyone reading this to address your eating/lifestyle behaviors and change them now. If you don't believe the modern food/cosmetic/other industry is careless and actually poisoning you, then you're living in a bubble. It's not more expensive to live/eat healthy so stop making excuses and start making changes; you'll feel better, look better and live longer; again, sounds like bs cliche'....but there's so much truth to it once you experience something terrible...don't wait for a wake up call when you can actually hopefully avoid it. Maria understandably had her moments, but was mostly smiling and positive; she's the strongest person I have ever known and dealt with the most atrocious thing I've ever heard/seen in a way that truly should make all of us think twice about stressing/fighting about our insignificant daily triggers. The last few months she gave everything she had everyday just to make it outside and sit under the open sky. She showed that priorities should be aligned and again, don't allow your life to be ruined by things that shouldn't; it's an easy cliche' to bypass....but she could easily convince you otherwise if you had seen her go through this and her strength will always be beyond impressive. As Maria would say, "peace and love"!