MF2C’s First Patient Sponsor – Zachary Spishock

MF2C’s First Patient Sponsor – Zachary Spishock

For seven years, I was living with a mass in the center of my right hand that I believed came about after playing baseball and other sports for many years prior. That all changed on March 30th, 2023, when I finally made the wise decision to call an orthopedic surgeon and get their opinion.

Weeks later, I met with Dr. Ryan Coyle, a board-certified orthopaedic surgeon, who specializes in hands and upper extremities. His findings started concerning me. The mass in my hand lit up significantly. After doing an ultrasound and an x-ray, Dr. Coyle suggested that I get an MRI to further explore the mass. The results were shocking, and I was informed that I needed to get a biopsy from Memorial Sloan Kettering Cancer Center in New York City to confirm the findings. I was sent away with my x-ray and MRI in hand, as well as the names of two doctors to which Dr. Coyle recommended I see.

Dr. Edward Athanasian

May 18th, 2023 was the first time I met Dr. Edward Athanasian, a 30-year veteran and specialist in orthopedic hand surgery. We spoke about the best and worst outcomes for my situation, leaving nothing off the table. The possibility of the mass in my hand being malignant was less than 1%, so everyone told me not to worry as I was going to be fine.

 A week later my family and I returned to New York City for my follow-up appointment, hoping to hear good news about my biopsy. “It’s malignant,” Dr. A explained. I could feel the emotions coursing through my body, but I stayed strong. With my mother and father both devastated, Dr. A asked, “Are you alright? How are you taking it?” and I told him, “I’m fine, let’s do this.” He could tell right then and there how strong I was going to be through all of this, and he knew he had a fighter in the ring. My diagnosis was Stage 3 Monophasic Synovial Sarcoma – a rare type of cancer that has only been reported in a few hundred people ever in the hand/wrist area.

Stage 3 Monophasic Synovial Sarcoma
Stage 3 Monophasic Synovial Sarcoma

The next steps were clear, and Dr. A presented a strong case about how to handle the cancer. Radiation and chemotherapy alone wouldn’t be able to shrink the mass enough to avoid having to amputate fingers or worse, my hand. I would need a different procedure, but the catch was that this procedure couldn’t be performed in the United States due to the FDA not approving it along with “Big Pharma,” and I’d be required to get this treatment uninsured. Therefore, I’d have to travel to Prague, Czech Republic to get a treatment called Isolated Limb Perfusion (ILP). I agreed to go forth with his plan.

During one of my appointments, Dr. A’s nurse, Roe, offered to give me the phone number of a man by the name of Trent Twaddle. Little did I know, this man would be the rock throughout my entire journey. After the long train ride back home, I sat in my room puzzled for some time while my parents waited outside. It was then that I decided to make the first phone call to Trent. After an hour or so, I decided to share the details of my conversation with my upset parents. After telling them how much Trent and MF2C were willing to contribute to my case, it brought tears to our eyes. Without MF2C, I would have never been able to travel abroad to receive treatment I needed to not only save my hand, but also my life.

Photo of Trent Twaddle, Zachary Spishock, Jake Meek.

Fast forward to June 20th, 2023 where my mother and I were now in Prague at VFN hospital to meet with Dr. Jan Lesensky, who is the surgical chief for orthopedic oncology (similar to Dr. A in title) and Dr. Miroslav Spacek, my cardiac surgeon responsible for the ILP procedure. After doing blood work and other tests, we discussed the procedure I was going to have. They explained how this procedure actually worked, as well as possible issues that could occur during the procedure – one of which could involve amputation of my limb. We spoke about studies involving my diagnosis, but data was so limited on soft tissue sarcomas that my data would be used to help doctors build a case to help treat future patients with Synovial Sarcoma. I was told that I was the third American to receive ILP in Prague since they began treatment in 2009. The biggest challenge they would face was that I was going to be the first patient ever treated with ILP that included abnormal anatomy, as I had high bifurcation of the brachial artery in my shoulder. Even though this presented challenges with possible blowout and collapsing of my arteries during surgery, Dr. Spacek still committed to do the best he could to treat me either way. 10 days later we boarded a plane to return home from a successful surgery with no complications.

Zachary Spishock

As soon as we landed in the United States, I saw Dr. A in New York so he could examine the surgical treatment and advise of any possible side effects. He explained how his next course of treatment would usually be radiation, but given the size and location of my tumor, we needed to consult an additional oncologist to consider chemotherapy as an option as well. When asked if a Synovial Sarcoma patient had ever received chemotherapy following ILP, Dr. A informed me that I would be the first. After further discussion with Oncologists regarding chemo, they ultimately decided that the chemo wouldn’t be done in efforts to shrink the tumor, but to give me the possibility of a longer and healthier life. Synovial Sarcoma has a proven track record for not responding to any types of chemo. However, there was one option I was offered – AIMs, which is typically referred to as the “red devil chemo” because of its distinctive color and because it can cause serious side effects, including potential heart damage.

The doctors explained all the potential side effects, including blood related cancers from this chemo, as well as long-term life effects that included infertility and possible heart failure. Ultimately, my oncologist and I both agreed that it would be safer to do this now with hopes of preventing the possibility of the cancer spreading, or to kill it if it did spread at all, rather than regretting the choice years later from recurrence. Synovial Sarcoma is known as a “slow growing, fast to spread” cancer, and that is why so many people will go years without noticing the abnormality on their body. Having chemotherapy performed was to give me a longer life If I was able to survive this, and I wasn’t afraid of what came next.

And so it began on July 24th, 2023. The next four months of my life would be utter hell as I received “the devils drug” in an effort to save my life. I received a total of six cycles of AIMs, the lifetime limit of this drug, due to its known potential for causing heart failure issues.

My cycles were as such; treatment for ten hours a day Monday thru Wednesday, followed by hydration for an hour on Thursday and Friday mornings (noted as the worst day of the cycle), with twenty-one days in between cycles (three weeks). This went on for approximately four months, finally concluding my chemo treatments in early November 2023. Some of the side effects I experienced included nausea, vomiting, loss of appetite, hair loss, fatigue, pain, constipation, and much more. The first round I was hospitalized due to trouble breathing and dehydration, with my heart rate reaching 240 beats per minute. We soon realized how important hydration was following chemo, and that made each of the cycles a little easier on me when I would hit my worst days. When the worst was finally behind me, we waited two weeks before we began molding a cast for my hand in preparation for radiation therapy.

That was when I met with Dr. Alektiar, a colleague to Dr. A, and a radiation oncologist known for conducting some of the best research about how to use radiation to shrink tumors before surgery. We were aiming for a home run at this point, as Dr. A knew we needed the tumor to shrink considerably if we had any chance of saving my hand. After mapping out the locations with tattoos and building the mold, I then received twent-five rounds of radiation directly to my hand for five weeks straight. At first, it wasn’t too bad, but then the burns on my skin started to get worse. Thanks to Trent’s suggestion, I started using Biafine Emulsion Cream. A medication that both he and Jake used on their hands to relieve the pain caused by radiation burns.

Jump forward to February 9th, 2024. Sitting with Dr. Athanasian, we reviewed my MRI and determining my surgery procedures. The good news – my tumor had shrunk significantly from radiation therapy, and there was a slight chance that he might be able to save all of my fingers! The bad news – there were four possible surgeries that I would need to receive in order to make saving my fingers a possibility. Iliac bone crest graft, an open reduction tendon graft, an intender fixation nerve graft, and lastly ligament reconstruction were all recommended. Even if we had to do all of these surgeries, Dr. A couldn’t guarantee he could save my hand until he opened me up.

Seven hours later, I opened my eyes and turned my head to look at what was left of my hand. To my surprise, everything was still there and functioning. Dr. A walked in minutes after with the biggest smile on his face and told me that he was able to save everything. In doing so, I lost half of the bone in my ring finger, one-third in my middle finger, as well as a nerve, a ligament, and all the muscle to my ring finger. He installed a metal plate with seven screws to give structure back to my ring finger. He used supplemental nerves and ligaments from my middle finger to supply function to my ring finger, and he took the muscle from my thumb to give strength back to my ring finger. To this day, Dr. A tells me he pushed the limits of what he felt comfortable with when it comes to hand surgeries. But, in all, I know that this decision was made because he knew how hard I fought to keep the hand from the beginning, and we were all in when it came to saving my hand. Three weeks following surgery my biopsy results came back from the tumor sample, and it was found to have negative margins. Dr. A told me that I was in the clear, and I was officially cancer free!

Six weeks post-op, I now had complete feeling in all of my fingers again – something the doctors told me I wasn’t going to get back entirely. The surgical wound had healed incredibly, and thanks to physical therapy (three days a week), I’d regained some strength and functional ability in my hand, which was faster than we thought possible. My original diagnosis in May of 2023 was that I was going to lose one to two fingers, and possibly the complete dexterity and function of my right hand due to the need for a double ray amputation. I believe that the ILP started the process of killing the tumor in my hand, the chemotherapy prevented any of the cancer cells from spreading, killed off cancer cells in my entire of body, and the targeted radiation managed to shrink the tumor enough to consider the possibility of saving my entire hand in surgery.

Thanks to Dr. Athanasian’s surgical touch, we were able to accomplish something unimaginable. But, truth be told, I would have never been able to accomplish any of this if it weren’t for Trent and Middle Finger To Cancer’s support. My decision to call a random stranger, who I knew nothing about, the day I was diagnosed was the uplifting energy and encouragement I needed when I was at the lowest point of my life. Trent guided me through the path that he once walked and gave me the strength and courage to go through this battle, no matter the outcome.

I’m truly blessed to be MF2C’s first sponsored patient. It has meant the world to me. Since the beginning of my battle, I’ve looked forward to helping the next person the same way MF2C has helped me. The ultimate goal is to get ILP approved in the United States, and for the FDA to approve the use of this anticancer drug so that doctors can perform the same, or similar, lifesaving surgeries without having to other countries. The obstacles that Trent and I had to overcome could all be eliminated if this treatment were available in the United States – making it easier for patients to afford the treatment, but more importantly, give them the option to save their limbs.

The simple fact that this treatment saved my hand when it wasn’t even a possibility speaks volumes. 185,000 people lose their limb every year in the United States. 3,700 of those are due to cancer. That’s 10 people per day who never had the opportunity to save their limb due to the lack of treatment options available in the United States. How would you feel if this were you or someone you loved? I didn’t have to give my middle finger to cancer, so I give two middle fingers to cancer!

Help us by joining the fight and give the Middle Finger to Cancer!

MF2C Donates $50,000 To Memorial Sloan Kettering Cancer Center’s Social Work Fund

MF2C Donates $50,000 To Memorial Sloan Kettering Cancer Center’s Social Work Fund

Middle Finger to Cancer would like to announce that with all of our supporters and their generosity we have donated $50,000 to the Memorial Sloan Kettering Cancer Center’s Social Work Fund. The fund helps patients with the ancillary costs of care: transportation, child care, parking, out of town lodging, etc. These types of expenses can keep patients from seeking care at specialty sarcoma centers far from home. Further, those with a cancer diagnosis are 2.5 times more likely to file bankruptcy and the Social Work Fund helps ease that burden.

 We were lucky enough to present this donation with Dr. Athanasian. Dr. Athanasian is one of the few specialists in sarcomas of the upper extremities in the world. It was his knowledge and dedication to his patients that saved Trent and Jake’s entire hand. Dr. Athanasian exemplifies the type of limb and life saving care often only available at sarcoma centers. It is this dedication, and that of other specialists like him, that inspired Middle Finger to Cancer’s mission to make sure all sarcoma patients have access to the best care available.

Another Middle Finger Given

Another Middle Finger Given

On December 28th, 2018, I rubbed my hands in preparation to blow out the candles on my 27th birthday cake when I noticed a hard bump at the base of my right middle finger. It was so hard I thought it was my knuckle and that my finger was dislocated. After a couple failed attempts to pull it back into place, I realized it already was and that this was indeed a bump. This was the start of my Sarcoma journey.

Undifferentiated Pleomorphic Sarcoma

I saw my general practitioner when I returned home who referred me to a hand surgeon. Both believed the bump was a ganglion cyst. They even joked that a short while ago the common treatment would be to smash this with a Bible, which happily we did not attempt. We did unsuccessfully attempt to drain it with a needle. Still not alarmed, the doctor allowed some time to see if it would pop naturally during physical activity. That too was unsuccessful, so the surgeon elected to remove the mass without any further testing.

I had surgery to remove the cyst on June 4th, 2019, coincidentally my girlfriend’s birthday (I did not win boyfriend of the year this year). I would later learn this initial surgery is a common mistake in the Sarcoma journey and one with potentially devastating consequences. Referred to as a “oops surgery”, this occurs when they remove the mass without testing it beforehand, thus performing the surgery without the benefit of knowing its malignant nature. Without this knowledge, the surgery almost assuredly does not remove all cancerous cells and instead often spreads the cancerous cells further. The consequences of this I dealt with later.

Hand Surgery

A week later I got the call that changed my life. Sitting in my office on a sunny Friday afternoon beginning to think about what I was going to do that weekend, my hand surgeon called trying to delicately break the news to me. The biopsy returned with the diagnosis of Undifferentiated Pleomorphic Sarcoma (“UPS”). UPS is an extremely rare form of cancer, less than 1% of all cancers, but it is an aggressive cancer that has the tendency to spread from its original location (often the limbs) to the lungs. My sunny Friday quickly turned dark and gloomy.

After a second opinion confirmed the diagnosis, I had to tell my family and friends. I grew up in Rochester, NY but now live in Atlanta, GA. My parents are still back in Upstate NY, so I had to deliver the news via FaceTime. They both answered the phone with the cheeriness of an everyday conversation completely ignorant to the news I had to share. Watching and hearing their devastation from hundreds of miles away was one of the hardest parts of this journey. It didn’t get any easier having to break the news to my loving girlfriend and close friends.

With my support behind me, defeating cancer became the only goal in my life. We met with several doctors, called for second, third and fourth opinions, researched the latest and greatest treatments, prayed often, and even looked for nutrition and lifestyle changes to give me the best odds of defeating this. The unfortunate part of this is that Sarcoma, and Undifferentiated Pleomorphic Sarcoma specifically, is so rare that there isn’t much definitive research to rely on. There are not very many, if any, clear carcinogens or known risk factors.  Something I hope to help fix.

Luckily, our efforts led us to Dr. Edward Athanasian (“Dr. A”) at Memorial Sloan Kettering Cancer Center in New York, NY. Dr. A is the only physician in the United States specializing in both hand surgery and Sarcoma. Dr. A quickly gained our trust with his high degree of knowledge and extensive experience treating Sarcomas of the limb; a combination we needed to accept his treatment plan. He instructed with profound certainty that a ray resection of my right middle finger is the only acceptable course of treatment. I had an extremely hard time grasping this. The majority of it was gone, why wouldn’t radiation work? Why not surgically remove more tissue of the area? All naïve questions in hindsight that don’t consider how aggressive this form of cancer is.

For all that don’t know me, I’m a very active person and sports have been my life. I played a variety of sports growing up and all the way through college, where I played football at the University at Albany. I’m right hand dominant and the thought of losing a finger on my right hand scared the hell out of me. I thought I would be losing the ability to do the things that make me the happiest. Getting myself on that surgery bed was also one of the hardest things I ever had to do in my life. At the end of the day, losing a finger was a small price to pay to beat cancer and I was fortunate to even have this option. I had my right middle finger removed August 7th, 2019. The surgery was a success!

Photo of a hand post sarcoma surgery.

Dr. A had clear margins, but they were close margins. This means that all the cancerous cells were found within the removed mass, but close to the edge (2mm to be exact). Normally this would have been enough, and no further treatment would have been needed, but because I had the “oops surgery” Dr. A recommended radiation treatment post-surgery. It was a judgement call because although radiation is an effective treatment, it can lead to other forms of cancer later in life and impair the hand’s function. Real tragic irony that the cure can also be the cause of another cancer. It goes to show how much further we must go in effectively treating all cancers.

For eight weeks beginning in October 2019, I underwent radiation treatment at Emory Hospital in Atlanta, GA. Think of the worst sunburn you’ve ever had in your life, and that would be about what it was halfway through. It was pretty gnarly by the end of it, but again, this was all a small price to pay to defeat cancer.

Picture of a hand after radiation treatment following sarcoma surgery.

On the day before Thanksgiving 2019, I rang the bell at Emory concluding my cancer treatment. I still return to Dr. A for frequent check-ups, but I couldn’t be happier to say I have been cancer free since August 2019!

Along with my girlfriend, family, and friends, Trent was someone who really supported me during this time. I messaged Trent after Dr. A mentioned MF2C and their mission. Trent was extremely generous with his time and willing to share his experience with me at each step along the way. Having Trent share his experience along the way was like being given a flashlight while lost in the woods at night – it provides guidance, clarity, and comfort during an uncertain journey. This is ultimately why you’re reading my story now. I know how impactful it was for Trent to share his story with me and I hope I help support others the same way.

With my treatments behind me, and haven gotten to better know Trent and his mission with MF2C, I wanted to get involved and help others battling cancers of the limb. MF2C is a non-profit dedicated to raising awareness for Sarcoma, supporting advanced, less evasive treatments, and helping others battling this disease. Please join us in giving the middle finger to cancer!­­­

Picture of a hand after radiation treatment following sarcoma surgery.

Why The Middle Finger?

Why The Middle Finger?

In the summer of 2015 Middle Finger To Cancer’s founder, Trent Twaddle, was a seemingly healthy thirty-two-year-old financial analyst living with his new wife in Houston, Texas. Following his wedding in May, Trent was seen by an orthopedic surgeon to evaluate a small lump in the palm of his right hand. The lump was first thought to be a common fibroma – a non-cancerous mass. After several weeks of physical therapy with no improvement, an MRI indicated suspicion of cancer.

A core needle biopsy was performed at the MD Anderson Cancer Center. The Division of Pathology studied the tissue specimen and results were returned soon after. Trent was informed that the lump in his hand was a sarcoma. More specifically, a Myxoinflammatory Fibroblastic Sarcoma.

The doctors informed Trent that surgery to remove the sarcoma would likely destroy his hand and almost all of its function.

After the initial shock, thoughts turned towards getting a second opinion. Soon after, Trent saw Dr. Edward Athanasian, MD at Memorial Sloan Kettering in New York. Dr. Athanasian confirmed the diagnosis, but suggested a possible alternative to immediate amputation – Isolated Limb Perfusion (ILP) with Tumor Necrosis Factor-Alpha (TNF-a), a cancer treatment that is not available in the United States.

By this time Trent had lost most of the normal function of his right hand.

Since the preferred treatment was not approved in the United States, Trent’s next stop was Paris, France where he was hospitalized at Gustave Roussy Cancer Campus. He endured a 7-hour procedure, where a mixture of TNF-a and melphalan (Alkeran) was delivered to his tumor via ILP.

 

Trent Twaddle in Paris, France preparing for Isolated Limb Perfusion (ILP) with Tumor Necrosis Factor-Alpha (TNF-a), a cancer treatment that is not available in the United States.

Left, Trent Twaddle in Paris, France preparing for Isolated Limb Perfusion (ILP) with Tumor Necrosis Factor-Alpha (TNF-a), a cancer treatment that is not available in the United States. Right, the last photo of Trent with his right middle finger intact.

Trent then returned to Memorial Sloan Kettering in New York for six weeks of radiation therapy. In the spring, a follow-up MRI revealed remarkable shrinkage of the cancerous tumor. Trent had also regained most of the function and dexterity in his right hand.

On March 16th Dr. Athanasian performed a meticulous surgery to remove what remained of the sarcoma. The life-changing procedure was an overwhelming success, but cost Trent his middle finger. After 9 months of trials and procedures, the worst was behind him.

Trent was finally cancer free! He literally gave the “Middle Finger to Cancer.”

Today Trent continues to monitor his progress with his doctors and will continue to do so for a number of years. All reports to date are positive and promising.

As an avid golfer, and a former athlete on the University of Missouri golf team, Trent was anxious to return to competitive golf. In the summer of 2017, he teed it up in the qualifying round for the United States Mid-Amateur Championship.

“I’m truly grateful for all of the support I have received from friends and family while battling cancer. I realize how much effort everyone put into my journey, and I have made it my goal to help others defeat sarcomas of the limb. This very reason is why The Middle Finger To Cancer began.”

 

From left, Amanda, Trent, Polly and Bruce Twaddle giving the middle finger to cancer. Family and friends were his largest supporters during his battle with limb sarcoma.

From left, Amanda, Trent, Polly and Bruce Twaddle giving the middle finger to cancer. Family and friends were Trent’s largest supporters during his battle and victory over limb sarcoma.

Middle Finger To Cancer stands with patients seeking treatment for sarcomas of the limb, providing benevolent assistance to lessen their burden and help them fight their battle. Additionally, MF2C encourages the pursuit of alternative medical opinions and treatments in order to defeat sarcomas of the limb.

It should be well noted that Tumor Necrosis Factor-alpha in Isolated Limb Profusion has been successfully utilized in Europe for twenty-plus years to treat limb sarcomas. As part of its mission, Middle Finger To Cancer actively encourages the drug manufacturers to submit the treatment to the Food and Drug Administration (FDA) for approval in the United States.

Will you join our efforts to help others, and give the Middle Finger To Cancer?

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