Help Michelle fight Stage 4 ocular melanoma

Hi everyone! My name is Michelle and in March 2018 I was diagnosed with a rare form of eye cancer called Ocular Melanoma (OM). This occurs in only 5 out of 1 million people. I like to joke that I won the unluckiest lottery! My diagnosis was a result of a routine eye exam and it took everyone by surprise - my doctors, my family, and me.

The prognosis of OM isn't too rosy - metastasis (mets) occurs in 50% of patients and if that happens, it's most likely fatal within 18-24 months. If it does spread, it travels by bloodstream and goes to liver 90% of time, followed by the lungs, bones and brain.

Due to those odds, I have been getting a liver MRI every 6 months and a chest X-ray every year. Scan day is always difficult and scanxiety is very real! I know the purpose is to see if my cancer has spread anywhere, which would drastically change my life. But as the years went on, I felt more and more confident that I was going to be okay; that I wasn't going to have mets. I also learned that from the genetics of the tumor in my eye, my risk of developing mets was only 20-30%. That's great! I felt very fortunate and maybe a little less "unlucky".

On February 6, 2024, I had my normal scans in preparation for upcoming visits with my doctors. I had remained NED (no evidence of disease, which is similar to being in remission) for almost 6 years. I was feeling great and was actually in one of the healthiest places I've been in several years. However, the report of that X-ray stated: small bilateral nodules, recommend chest CT. What?!?!

That led to a chest CT the following afternoon. And the summary said there were "pulmonary nodules consistent with metastatic disease". They identified at least 6 nodules, in both lungs, with the largest 1.7cm in size. This has now become my worst fear brought to life!

This led to more MRIs, a PET scan and eventually a lung biopsy. We were hoping to get the biopsy done along with my regular eye checkup. This is where having a rare disease gets complicated. My ocular and medical oncologists are located in Philadelphia, PA, which is a minimum 4 hour drive from our home in Culpeper, VA. Due to that, we have to drive up the day before my appointments, stay the night and then drive home after a long day of waiting around and tests. However, we are very grateful since I'm able to have some of the best experts in OM on my team.

Fortunately, I was able to have a robotic-assisted bronchoscopy while in Philly. They took samples from 2 of my nodules to biopsy. This was done on a Wednesday and I was told I should receive the results the following Thursday or Friday.

Being in a limbo state is some of the hardest and strangest times to be in. I tried to keep a normal schedule, with work, but soon discovered that I needed to bow out of various community and business endeavors. I was hoping that the nodules would just turn out to be benign. I thought of how my life would change if they weren't. I was worried I may lose my business. Our house. So many things. Would I live to see 50?

On the evening of Monday, February 26, 2024, my life drastically changed yet again. The pathology report confirmed it my OM had spread to my lungs.

The good news was my liver was clear and this gives me a somewhat better prognosis. The lungs seems to be more amenable to treatment and tumors tend to be slower growing. The PET scan that did not show tumors anywhere else in my body. However, I'm even more rare in that less than 10% of patients only have mets in the lungs. Yay for being more of a unicorn!

Like most rare diseases, there aren't a lot of treatments available. Hell, not many people even know about it, let alone have funding to research it! There are only 2 FDA-approved treatments for metastatic OM and I am not eligible for either of them. One is due to my liver being clear of lesions (which is great!) and the other is I don't have a specific genetic marker. Due to this, my only hope is clinical trials.

My oncologist recommended a specific clinical trial and after another trip to Philly for additional screening, I was officially a candidate in the trial. The next hurdle was finding out what I would be receiving. It is a randomized trial which means I would be assigned to receive the experimental drugs or the "standard of care" treatment. It would not be a placebo. The new drugs are showing great promise with shrinking tumors and prohibiting growth. The standard of care drugs are mainly used for cutaneous/skin melanoma and OM doesn't respond as well. This was another agonizing waiting game!

Fortunately, I was randomized to receive the experimental study drugs! Woo hoo! We went to Philly and I had my first dose on 3/27. It was a long, 7 hour day with blood work, ECG and vitals taken throughout the day, both before and at various intervals after taking the drugs. The drugs are in pill form and I take them twice a day. I have to keep a diary of the times I take them and there are rules, such as at least 10 hours apart from doses and more. We will go back to Philly just a week later for another long day and they will introduce the second drug that I will take along with the first one. Yet another trip to Philly two weeks later and then on a regular schedule of trips every 3 weeks. Most of these visits, we only have to stay one night, but on days when I will have imaging done, that will require us to stay 2 nights. I could be on this trial up to 2 years, so I'm in it for the long haul!

All of the extra trips to Philly, as well as all the imaging I've had done up until this point, have already taken a toll on my business and our ability to pay bills. We do get some reimbursement from the trial sponsor for lodging, however, that has been slow-going and doesn't cover everything (staying and eating in a big city isn't cheap!). I will not receive other compensation for being in the trial or for lost wages. Plus, our health insurance does not cover anything related to a clinical trial.

I am self-employed and have had my small business for 14 years. I'm a Licensed Massage Therapist, Certified BodyMind Coach, Reiki Master and CranioSacral Therapist. It's only me at my studio so if I'm not working, there isn't any money coming in. I've been struggling to pay both my business expenses and my personal bills (utilities, groceries, mortgage, etc). I have had to borrow money from family and pay bills late. I have had to reschedule clients due to all of the extra doctor appointments in Philly or not feeling well. Side effects from the drugs are beginning to appear and they will determine how much I will be able to work. Honestly, I don't know how much I will be able to tolerate the side effects as I'm just starting - it could be relatively manageable or very debilitating. I have been looking into grants and help for cancer patients.

This is all very scary! I have hesitated to ask for help up until this point. However, I'm putting my pride and stubbornness aside and asking now. Could you please help me? ANY amount would be greatly appreciated! If you have other ideas of resources, please let me know.

My plan is throw everything I can at this horrible, aggressive disease. I want to be around for a long time to keep telling bad eye puns and pirate jokes, and to keep dressing up in vintage clothes or as a pirate. I have the best possible medical team. My husband is my caregiver and he is fantastic (and misses work too with all of the trips required). I now just need more help to keep fighting as best I can. If you’d rather donate directly, my Venmo is @Michelle-Felux-1

Thank you so very much!