Hello & Talofa!

 

LOUIE THE FISH

I write on behalf of our immediate family as we work together to find an immediate solution to Dad's rare and aggressive cancer. Many of you know him as Louie The Fish (originally Louie Na Ika from the South Pacific), a world traveling artistic hippy - blues harmonica playin' - bone carvin' - legend in his own mind - fly fishing extraordinaire! And to us, a loving, adventurous, bad joke telling, moves to the beat of his own drum, Dad / Grandpa / Great-Grandpa / Husband / Uncle / Brother and more.  In a nutshell, we're hoping to raise funds to cover the cost of a new innovative chemotherapy clinical trial not covered by insurance.  Dad's cancer is spreading rapidly and at 77 years old we're racing against the clock to find a treatment that is not only effective but also does not exacerbate his declining health. In less than a year his cancer spread from a single localized tumor to multiple regional tumors and we fear may metastasize in similar quick fashion.  There is  little to no data for his stage and cancer type so we're hopeful that the outcomes of this study might provide him a definitive efficacious treatment option before things get worse, and maybe even collect data on therapies that may benefit others who contract this rare and aggressive disease.  

More on his story...

LIPOSARCOMA DIAGNOSIS - 2020

At the onset of the pandemic he struggled with significant muscle wasting, fatigue, dizziness and overall weakness and after two long months of multi specialty appointments from Gastroenterology, Cardiology, Endocrinology, Hematology and Oncology, we discovered Dad had a rare and aggressive type of cancer. In September 2020 we had the diagnosis - Dedifferentiated Retroperitoneal Liposarcoma, after imaging revealed a 28 cm tumor growing adjacent to multiple possible compromised organs and his abdominal wall (kidney, bowel, spleen, rib cage). Less than 2 months later, with all the uncertainties of rising COVID cases heading into its first winter, we flew Dad from Hawai'i to California to get immediate surgery at the UCLA Sarcoma Center. He underwent a difficult resection on November 20, 2020 that required a blood transfusion get through it but ultimately successfully removed the tumor and we hoped for no recurrance.

 

LIPOSARCOMA RE-TREATMENT - 2021

Unfortunately within 6 months 2 new tumors appeared in his abdomen. We moved into the next phase of treatment and he spent the next 6 months on two back to back Chemotherapies (Doxil & Halaven) that eventually caused more fatigue and significant hair loss to no avail. At his 1 year check up in November 2021, CT imaging revealed that the tumors continued to grow rapidly and now had multiplied from 2 to 6, with the largest already spanning 11 cm. We chose to act fast, got images to UCLA to be reviewed by the Sarcoma Board in December 2021 and now a month later he will undergo a second regional resection on January 12th, 2022.

 

OUR ASK - 2022

There is little treatment options beyond what we've exhausted for this type of rare and aggressive cancer. We can use Radiation only once at some point but otherwise we take the chance of wasting another year of a variety of Chemotherapies hoping one of them works for his type of aggressive cancer. However, because time is against us, we have the option to remove one of the tumors next week and have it studied in immunocompromised mice through a company named Certis. If we can grow his actual tumor, we can run a simultaneous clinical trial of 4 alternate Chemotherapies (Eribulin, Gemcitabine & Docetaxel, Yondelis) to proactively see which he may respond too. The initial cost of this cutting edge trial is $7500, simply to get the Initiation Kit ready in the surgery room at UCLA and shipped to the lab in San Diego for implantation. Once it's implanted in the mice, it can take another 4-6 months to grow before we do a trial which will be Dad's typical post-surgery recovery time frame anyway before we make any treatment decisions. The 4 drug arms + placebo will cost us $6500 each (4 x $6500), so in total we'll need to raise $26,000 after the initial payment of $7500 for grand total of $33,500. Unfortunately, although having this type of technology available to us is such an advantage given just how fast this tumor keeps recurring, it is not covered by insurance and falls outside of the scope for organizational non-profit funding. So, we humbly ask you all to help us fundraise!

 

What we can promise, is once Dad is on the road to post-surgical recovery here in LA - he'll happily record any requested Blues jingle, maybe even personalizing it a little, as his way of saying THANK YOU for any donation small or medium or large! We couldn't be more grateful to have you all consider our need, and thank you all in advance for your love, prayers and support throughout his journey!

 

With Love,

The Fish Family

 

Louie The Fish - https://louiethefish.com/