Lots of updates – I’ve been busy…crying, laughing, throwing stuff at the wall, living my best life and feeling so low and high – seriously all in the same hour some days.
In May – I learned of new tumors in my liver and my current treatment (that I was traveling to Philly for) wasn’t working. Immediately following that crappy news – our family surprised Paul and I as they partnered with the MRF to fund a research grant specifically focusing on HLA negative patients AND our KC community came together and has raised over $150K to kick off a new research grant. ALL IN A MONTH!
The event was amazing and we celebrated and were humbled, wowed, and speechless by the love, support and extreme generosity of so so many!
From our family and friends of many many years, throughout each chapter of our life to friends we met that night we are so grateful. Thank you will never be enough but thank you for being part of my family’s and others battling OM HOPE.
The research grant ‘Options Bring Hope’ will support research for the 50% of the OM patients with metastatic melanoma who are HLA negative, which myself and many of those I have met through my treatment journey fall into. To my OMies with metastatic melanoma and HLA negative – this research grant is for ALL OF US! We need research and we need better options to extend our lives.
‘Options Bring HOPE’ Learn more about the research grant and donate here: https://one.bidpal.net/lindsayzubeck/welcome
In May – I also decided to try to buy some time while I determined my next plan of attack by starting a new treatment – immunotherapy infusions. My hopeful plan was to buy several months until I felt more comfortable with some of my other more aggressive options. The infusion I choose was just FDA approved for metastatic melanoma and toxicity was low so decided to give it ago. I have been very careful to keep toxicity low as overall I am so healthy and feel pretty good – I just have these lesions growing in my liver (JUST, lol).
The end of May, I sat in the infusion chair for the first time. Lots of emotions but Paul was there making my tears turn into smiles. Paul has a hard, crappy role as my cancer husband but so glad it’s him – truly I am the luckiest girl to have him by my side.
The first infusion hit me hard. I went to Caden’s baseball game that night and then couldn’t get out of bed for 48 hours. Flu like symptoms but I welcomed them as my nurse responded to my emails with – that is exactly the response we hoped to get…your immune system revving up to fight. After those 48 hours I felt pretty good and fully resumed life – working, summer travel, cheering on the kiddos, all the things I love to do.
Infusion took place again in June and July – both with less side effects and was feeling hopeful I’d be on these infusions for several more months and how lucky I was for tolerating them so well.
The end of July, I had my next round of scans – MRI of Orbit (checking to make sure my enucleated eye was behaving), PETCT (for mets outside my liver), and Liver MRI (to see the lesions in my liver).
Results came back quickly and celebrated my orbit was behaving, no lesions outside of my liver, no new lesions in my liver BUT the lesions I had in my liver had grown a considerable amount considering I have been doing treatments. Considerable amount to say – no more infusions and I need a new plan asap.
I continued to work and gain expert advice from all my care teams at Columbia U, TJH and UCH. The most amazing thing about my disease and how rare it is – is the collaboration amongst the teams around the country. To truly have amazing docs, nurses and my care team is expanding by the day – I am so blessed.
Right away I had several options and I’ve always said OPTIONS bring HOPE but it’s getting tricky now and very strategic. If I choose some options I am automatically eliminated from other trials so have to constantly be thinking short term and long term and saw it already play out against me. There is a really promising clinical trial going on with the hopes to get it FDA approved – this option went to the top of my list BUT the criteria for the study is to have never been on a ‘like’ drug before. Just my luck – the promising drug combo is drug I tried 5 years ago on a adjuvant clinical trial (at Columbia U) to prevent mets. I had to quickly drop out of that trial after four months due to extreme toxicity to my liver. I think I was the only 1 or maybe one other patient that had to drop out…everyone else handled it well.
So if you could imagine those emotions – there is already 1 FDA approved uveal/ ocular melanoma metastatic treatment (I don’t meet the qualifications for – the reason for the grant and it’s research) and maybe soon to be two (maybe would not qualify for once FDA approved too) LIKE are you kidding me!
But then … My UCH doc recommended I connect asap with UPMC (Pittsburgh) to learn about TIL. That flooded my brain with uncontrollable emotions because I didn’t think I was there ‘yet’ even though I always prayed if needed I could try TIL. A huge inspiration in my life, Katie, had undergone the full process and is now NED – which is unheard of in the OM disease. Katie has been so inspirational along my journey and no way I could have got through some super dark days without her guidance and support. We talked through TIL and before I knew it I was connecting and sending UPMC all my records to hopefully become a patient on their TIL trial.
Concurrently – TJH connected me with MDA I was headed to MD Anderson, Houston to speak with that team there about their TIL trial and another clinical trial I was interested in.
My time at MDA was wonderful. My mom and I enjoyed the city (amazing food, lots of walking and laughs) and met with the OM team and their liver surgeon.
I returned home and then the following week I had more phone calls, virtual meetings and emails with my care teams. Lots of ups and downs but was accepted to go to UPMC to have my largest tumor removed and hopefully start the TIL process with an amazing team and crazy amazing research and science being conducted.
Below is the full TIL process but the game plan now is just to remove part of my liver that holds my largest tumor. I should know in the next few weeks if that tumor was able to grow TIL and if potent enough to use to combat the rest of the cancer in my body. My tumor will also be used to further OM research. The previous biopsies of my liver lesions showed ‘normal OM tendencies’ so the fact that my previous treatments did not buy me anytime and my tumor was completely resistant is concerning – leave it to me to be difficult BUT praying my difficulties leads to more hope.
So off to Pittsburgh and we’ll see how it goes.
Tons of unknowns but here’s to lots of prayers and holding onto so much HOPE.
Thank you to all that have followed along and support my family along our journey.
Love your STAGE IV OM thriver ❤️
#eyesgetdilated #getnaked #FUOM #SeriouslyFUOM
Options Bring Hope Research Grant
TIL Trial – UPMC
Lifetime series with Dr Orloff and I.