January 31, 2025 - I finished my 7th round of high dose Ifosfamide today. My PET scan showed some stability and shrinkage of tumors so I am continuing this chemotherapy. This round was uneventful health wise, but there were plumbing issues in my hospital room and I spent an extra night in the hospital because a nurse accidentally turned off the chemo infusion. I am back at school full-time now and looking forward to graduating in June!

On December 1, 2024 I finished my 6th round of high dose Ifosfamide which is also my 12th round of chemo. I also finished my first college class in over a year. The chemo has been shrinking the tumors and I only have mild pain here and there. I will have a PET scan in January. My next treatment options are more chemo or a protein kinase inhibitor.

October 28, 2024 - I started my 5th round of chemo today and I was able to stop and cast my vote on the way to the hospital. Although I never like going into chemo, I do feel like I am stronger and healthier and that this round should go better. I have found that as soon as I start to feel bad I can slow the chemo down and this makes a huge difference in how I get through the week.

September 22, 2024 - I’m starting my 4th round of chemo today. I’m feeling pretty good. I still feel anxious about treatment and being in the hospital for 7 days, but I’ve put on weight and I’m getting stronger every day. My head is clearer and I’m able to recall what I read now that I’m off pain killers.

August 22 - 28, 2024 - I got called into my 3rd round of chemo a day early. I wasn’t really ready, but I will be getting out of the hospital on my 23rd birthday. This round went even better than the last. I didn’t have any health issues, so it was a matter of doing my time while trying to keep my physical and mental health strong by walking and meditating a lot.

August 12-18, 2024 - I went to the Joe Dispenza meditation retreat in Grapevine, Texas. This trip was a wish granted to me by the Nik’s Wish organization who grants wishes to young adults, ages 18-24, who are suffering from life threatening or life changing illnesses. Their goal is to bring joy, but I have received so much more than joy. I received a lot of greatly needed love and support from so many caring people. It was a difficult, but truly life changing experience.

End of July 2024 - I know the chemo and radiation are working because I’m not in pain like I’ve been the last 9 months. So, I went to San Francisco for 10 days to see my girlfriend. It was rough because I was still detoxing and still really weak, but it was great to spend time with her. Most of my hair fell out within 3 days. It’s not quite completely gone and I can see new hair sprouting already. I think it will grow back a lot faster with this chemo.

July 8-17, 2024 - I had 3 days of hyperthermia on the tumor in my back just before I started the 7 days of high dose Ifosfamide chemo. This round went better, but I forgot that chemo remains in the body for about 72 hours after taking it. You have to remain on anti-nausea meds or you can have a bad reaction. I was so sick I couldn’t take my pain medication and I detoxed involuntarily. I had a mobile nurse come give me fluids and anti-nausea meds and had extra infusions throughout the week to help. This was a very very difficult experience to go through, but I’m off all pain killers which is a relief. Now I’m trying to manage the anxiety, PTSD and sleepless nights which are side effects of detoxing.

We would like to honor a beautiful young spirit named Teresa Belluco from Italy. Teresa was 15 years old when she passed of synovial sarcoma this last June. She had great hopes of surmounting this disease and went to MD Anderson in Texas where she courageously participated as one of the first patients in a new immunotherapy clinical trial. Teresa also donated tumor tissue to the synovial sarcoma tissue bank at CHOP for further research and her family has donated, at Teresa’s request, $108,000 to the Following Seth to Cure Synovial Sarcoma Fund and $65,000 to the Spence Family Sarcoma Fund - Tumor Glow. We are truly grateful to the Belluco Family for these donations and we pray for peace and love to be with them.

June 19, 2024 - I had a fever less than 24 hours after getting out of chemo. When a cancer patient gets a fever they are told to go straight to the emergency room. What you should know is, they will keep you for 72 hours while they run cultures from your blood, nose and throat. So I spent 3 more days in misery in the hospital and I was perfectly fine. I had just gotten a little dehydrated. We learned that we don’t have to rush to the hospital every time I have a low fever.

June 11, 2024 - I started high dose ifosfamide for 7 days straight in hospital. Within days I started having severe pain and paralysis in my throat from the radiation last week. I couldn’t eat anything and I was on constant pain killers trying to manage the pain. I’ve lost a lot of weight which is making me weak and causing more pain issues. It’s a vicious cycle.

June 2024 - We stayed in a hotel for 5 days while I had radiation on my cervical spine. Then I had ultrasound on tumors to hopefully break them up a bit in order for chemo to work better on them. Then on to high dose ifosfamide for 7 days straight in hospital

June 3, 2024 - I had mapping done in preparation for radiation in two days. I will stay in Santa Monica instead of traveling back and forth because travel has become too hard on my body. I stretch throughout the day to help lessen pain.

June 1, 2024 - My sister got married and it wasn’t easy getting through all the festivities. Luckily my girlfriend came down from school and helped me through it all.

May 28-30, 2024 - After recovering from the pneumothorax my scans showed growth and spread of tumors. I am off Stivarga and will have radiation and high dose Ifosfamide chemotherapy starting soon. I will lose my hair again, but I’m actually looking forward to the treatment in hopes that it will get me out of pain. I was admitted to the UCLA ER to get an MRI with sedation because it’s too painful for me to lie down in the MRI machine. I ended up being transferred by ambulance to UCLA Santa Monica. I saw all my old nurses on the oncology ward. They made me feel as good as one possibly can in this situation.

May 6-13, 2024 - I had a new pain and difficulty breathing and I realized it felt similar to when I had a collapsed lung last November. We went to the emergency room and sure enough, I had a pneumothorax. I spent 7 days in hospital first using oxygen to see if the lung would heal on its own and then I had to have surgery for talc pleurodesis to close the lung. I had a much better experience with the doctors and hospital this time around.

April 2024 - I’ve spent the month continuing physical therapy 3-4 times per week. I have acupuncture 3 times per week. I have psychotherapy twice a week and I stretch and exercise throughout the day everyday. The constant pain has not abated.

March 30, 2024 - I have really been on a rollercoaster ride of pain and withdrawals for some time now. With the help of my new pain specialist and my long time physical therapist (Caleb Guevara) I’ve gotten off Oxy (cold turkey) and I’m trying to go back to doing as many normal activities as possible. I’m still in pain, but I feel like I’m getting better control of my health and life. I go back to school in a couple of days.

February 27, 2024 - I have been in constant pain since September. I had an MRI on my spine and the bone lesions do not appear to be pressing on any nerves. We do not know why my muscles are cramping, but it’s probably due to trauma from radiation and surgery. Doctors can only offer pain medication and muscle relaxers. I wake up during the night with painful muscle spasms that I try to manage with massage and stretching and, of course, pain medication. I’m seeking more alternative treatments.

February 7, 2024 - I’m still in pretty bad pain since having radiation and surgery. Deep tissue massage helps the most, but I’ve been trying chiropractics, acupuncture, Reiki, and trying to stay mindful of my health constantly. I’m having a hard time weaning off pain killers and muscle relaxers.

February 1, 2024 - I’ve been on Stivarga for one month now. I had scans last week which showed shrinkage of lung tumors, but there might be a couple of other tumors which have grown slightly. I will have another scan in a couple of weeks to confirm. I’m on a half dose of Stivarga since I suffered severe foot pain, a known side effect, when the dose was increased.

December 25, 2023 - We did it! We raised $100,000 to begin research on synovial sarcoma in two labs at UPENN! A big thank you to Richie Sambora, Bobby Mandal of the Mandal Family Foundation, Ali Landes of Wendy Walk, Layna Friedman of Friedman Jewelers and my aunt, Denise Smith-Salazar, for all their hard work and support of the Following Seth to Cure Synovial Sarcoma Fund. By reaching this goal research dedicated to finding a cure will begin at CHOP. Thank you to all my family, friends and everyone who donated!

December 18, 2023 - I’ve been recovering at home after lung surgery. The muscles in my back are really tight and spasm causing intense pain. I’ve been getting deep tissue massage and acupuncture and I’ve been using heat, ice and a TENS unit to help relieve the pain. I also do light exercises throughout the day. My back is getting better, but it’s slow going.

Our goal was to raise $100,000 by December 1st, 2023 to start additional research in two labs at UPENN in conjunction with CHOP. So far we have raised $66,263 and we have approximately $34,000 in pledges. Once we receive the pledges we will have met our goal! Thank you to Richie Sambora, Dave Amaro, Luke Ebbin and Curt Schneider for giving an awesome performance and supporting the Following Seth to Cure Synovial Sarcoma Fund! And a special thanks to Denise Smith-Salazar and Layna Friedman for making this event happen!

Finally leaving the hospital. I got my discharge at almost 9pm, but after 18 days I’m ready to get out of here. I was told I was exposed to Covid-19 by a staff member and would need to take a Covid test. They said if I tested positive that I would have to stay in the hospital. I refused the test and went home instead. If I’m sick I’ll isolate at home. I’m fine, just in pain.

December 4, 2023 - Day 18 UCLA - I had to have the chest tube removed before I could go home. It feels exactly like having 8-10” of plastic tube yanked out of your chest.

December 2, 2023 - Day 16 - Being in the hospital 16 days and having lung surgery is pretty shocking to me. I did not expect to go through what I’ve gone through the last two weeks. I’ve had a very painful difficult experience and a lot of it was due to doctors making mistakes or “miscommunicating” information. It has caused me a lot of anxiety and I feel some anger about how I’ve been treated. I spoke with the doctor about it and she really listened to me. I didn’t expect that. She treated me much better afterwards and it’s helped me deal with some of my anger.

December 1, 2023 - Day 15 UCLA - I had VATS (Video Assisted Thorcic Surgery) today and the surgeon found TWO holes in my lung. They removed adhesions from my last lung surgery, they did two wedge resections to close the holes, cleaned my chest cavity of the blood from the blood patches and finally did a talc pleurodesis to hopefully keep my lung from collapsing again. I’ve been doing well, but it takes non-stop effort to manage the pain and the constant invasive assessments by medical staff. I was even given an x-ray at 1:30am and found out it was meant for another patient.

November 28, 2023 - My second blood patch was a big effort. I tried to get the blood to coat my chest cavity by rotating my position every 10-15 min. The blood patch still failed. My lung is not staying sufficiently inflated to make the patch work. I now have to have a full lung surgery. On Friday I will have video assisted thoracic surgery (VATS) to find the hole and then seal it with talc pleurodesis.

November 27, 2023 - 11th day at UCLA - As I wait for my next blood patch I am trying to stay healthy. I am doing very lite exercises to keep my blood flowing and to prevent blood clots. Keeping active means that I can skip the blood thinner shots to my gut, which are painful and cause bruising. I also made a video for an upcoming charity event.

November 24, 2023 I had the first blood patch or blood pleurodesis. 100cc of my blood was taken through my port and then reinserted into my chest cavity through the chest tube. This was done to try to patch the hole in my lung. It didn’t hurt, but it also didn’t work. We will try another blood patch in a couple of days.

November 24, 2023 - 8 days in the UCLA ER and I finally got a room in the hospital. Today I’m having a blood patch to try to seal the leak in my lung. The doctors were pressuring me to have a talc pleurodesis, but I opted for the blood pleurodesis instead. It is less painful and less damaging to lung tissue, but it doesn’t always work on the first try. Hopefully it works, but if it doesn’t we will try again until it does.

I had Thanksgiving in my room with my parents at UCLA. I also had a few visitors; my sister and my future brother-in-law brought pumpkin pie and made my day!

November 17, 2023 - I’m being admitted to UCLA ER. I have a large portion of my right lung collapsed. A student doctor put in a chest tube and I’ve been in horrible pain. The ER is packed and no hospital rooms are available. I’m one of many who need emergency treatment. This is not a good place to be. Hopefully I will be home in a couple of days.

November 17, 2023 - I returned to SLO last week to stay in my apartment and see my girlfriend and roommates. Unfortunately, I had to come back home early to get a CT scan today to see if I have inflammation in my lungs from the radiation treatment. I’ve had a persistent dry cough since I finished radiation and it’s hard to speak. I have pain throughout my back and in my chest. I was put on a low dose steroid and cough medicine. I’m continuing to take tramadol for pain relief. I’m struggling emotionally.

November 9, 2023 - Fundraising - Back in April 2023, we met our first goal of raising $1,000,000 for The Spence Family Synovial Sarcoma Fund which created the tumor bank and national tumor board at CHOP. Now we are urgently focusing our fundraising efforts for dedicated lab time at UPENN to study synovial sarcoma in hopes that we can bring a new drug to clinical trial within one year!

As for my treatment, I started taking Stivarga or Regorafenib, a multikinase inhibitor. Stivarga is made to treat colon cancer, liver cancer and stomach cancer, but I am taking it because there isn’t a specific treatment for synovial sarcoma at this time. Hopefully there will be minimal side effects and tumor reduction in the coming months.

November 2023 - This week I learned that C4 Therapeutics pharmaceutical company has discontinued the drug CFT8634 which is the experimental drug I was on for the last 5 months. We put a lot of hope into a clinical trial and it’s tough to learn that I went through so much treatment, pain and difficulty and now the trial has failed. It’s very disappointing.

October 25, 2023 - I finished radiation today! What a relief to not have to drive to LA everyday in stop and go traffic for hours. I don’t have to plan when to take pain meds, anti-nausea meds and muscle relaxers. I don’t have to lie down in a MRI machine in the most uncomfortable position until my arms are numb. And most importantly, the pain is receding and I am starting to feel better. I still have pain, but things are getting better.

I was supposed to start radiation on the largest lung tumor October 12th, but when I went in for treatment it was discovered that my tumor shrank by about 30%. I wish it was due to previous treatment, but the radiology oncologist believed that the tumor was bleeding due to my being on blood thinners for a blood clot. The doctor believed the tumor appeared larger than it was and once I was off the blood thinners the bleeding stopped and the blood was reabsorbed by my body. I had to have the tumor remapped and I will start radiation next week.

I’ve been on Tramadol and a muscle relaxant for pain for several weeks now and the pain in my back and chest are still constant. I sleep sitting up and can’t really do anything. I’ve dropped most of my classes at college.

I had mapping of the biopsied tumor and I will start IMRT radiation on Thursday, Oct 12, 2023. I had to take oxycodone to be able to lie down for the MRI and I was sick the whole car ride home. Still in pain though.

October 2023 - I’ve had constant back and chest pain for weeks now. I am unable to take a deep breath without pain. I tried physical therapy and ended up in the ER October 2nd, due to severe pain. My primary care physician is now trying needling in the muscles in my back with lidocaine. Hopefully this will get my muscles to relax and give me pain relief.

September 2023 - Getting my new apartment set up and hoping that I will get back in the water soon. It’s been a tough couple of weeks, but I’m glad to be back at school and with my friends.

The C4 Therapeutics trial drug turned my hair blonde and thinned it out.

September 14th, 2023 I had severe pain in my back and chest and shortness of breath. I ended up in the ER in San Francisco. An angiogram showed a small pulmonary embolism so now I’m taking a blood thinner. I also had a lump under my arm which turned out to be an abscess that had to be drained. I was put on antibiotics for the abscess and sent on my way. Then I had an allergic reaction to the antibiotic and had to go on steroids. School started, so I am at Cal Poly trying to get back into the study groove. It’s hard because at this point I’ve been in constant pain for two weeks.

September 2023 - A lot has happened over the last 2 months. I was in Japan for 5 weeks for a student conference and to travel with my family. When I came home I was sick for a week with Covid 19. I had scans at the City of Hope September 11th and found that one of the tumors grew enough to take me out of the C4 drug trial. I also have one new tumor. Most of the tumors were stable and there was even shrinkage, but I was required to leave the trial due to the biopsied tumor having accelerated growth. My doctor said the drug just wasn’t working for me. I will be having radiation on the biopsied tumor soon.

July 2023 - I had scans at the end of July and it was a mixed bag; some growth, some stability and some spread. However, since the results were within the RECIST guidelines I am remaining on the C4 Therapeutics protein degrader for another 2 months. In the meantime, I am in Japan for 5 weeks for a student conference and I love it here!

In June my friends graduated from college and I moved out of my apartment at Cal Poly. Going through treatment has delayed my college experience some, but I plan to graduate in little over a year.

May 2023 - The clinical trial drug causes severe dehydration and severe fatigue. As a result, I haven’t been as active as usual. On Mother’s Day I ended up in the ER due to bad chest pain and difficulty breathing after I went surfing. We were worried that I was having a heart attack, but it turned out to be an intercostal muscle strain. Probably since I’m a little out of shape.

I drove approximately 400 miles every week from SLO to the City of Hope for 8 weeks during Spring Qtr. The constant driving, all the testing and being away from school really took a toll on my mental and emotional health. I started therapy to help manage things better.

April 2023 - Lung biopsies are more involved than I initially understood. There is pain and there are risks. One risk is that you can suffer a collapsed lung. I had a tiny bit of lung collapse on my first biopsy which made it more painful and took longer to heal than the 2nd biopsy. I had 2 lung biopsies within two weeks for the C4 Therapeutics clinical trial in April.

I spent spring break 2023 getting ready to start the C4 clinical trial. The trial is more involved than I expected, starting with two lung biopsies and many many blood draws and EKGs. In 8 weeks I will get a scan to see if the protein degrader is working. In the meantime, I’m back at college and will have to travel from Cal Poly SLO to the City of Hope for weekly monitoring.

2023 was brought in with big surf and lots of rain. I headed back up to Cal Poly after getting Covid over Thanksgiving. The good news is my immune system seems to be working fine. I have also discovered I have Gilbert’s Syndrome, which is causing liver issues. We are still considering treatment options, in the mean time, I started a low dose (200mg) of Votrient in January 2023. I am continuing to learn how to deal with the stress and anxiety of the treatment process.

I started Cal Poly in September 2022 and have had no treatment since going off Votrient in July. My subsequent scans showed minimal growth of the lung tumors and we are evaluating my next treatment options. I have had genetic testing of the tumor tissue and based on this information will choose the next treatment.

I started taking Votrient, a targeted therapy, in July 2022 and my hair grew back blonde and wavy. I was on Votrient for less than 2 months due to my bilirubin level being elevated. I continued surfing and taking college classes and prepared to transfer to Cal Poly in September.

I was so happy to be done with chemo. I continued taking natural supplements prescribed by a naturopathic oncologist. I also started the Care Oncology Clinic’s protocol of taking off label drugs, also under the supervision of a doctor. Within weeks my liver enzymes were out of control and I had to stop taking the off label drugs.

6th Round - Finishing chemo makes you feel good, but also uncomfortable. You can’t wait to get out of there, but it is also the only place where people truly understand what you went through. It’s a bit unnerving to go back into your regular life because life is not the same. Chemo might be over, for now, but I will still have to go through more treatment.

5th Round - I walked more and more as I managed chemo better, literally walking miles everyday. Taking an actual shower with a shower guard over my port instead of a sponge bath made me feel more normal.

4th Round - I felt I had more of a handle on the treatment. I was confident that this round would be better than the previous rounds because we had figured out how to deal with the difficulties so far.

3rd Round - This round was a turning point because we discovered that an anti-nausea med was making me sick. Once we changed the medication my rounds went much better. I started to manage my treatment and I made sure that I was getting the right meds at the right time and this made all the difference.

2nd Round - I had a lot of fear and anxiety going into the 2nd round. I found mental and emotional visualizations extremely helpful. Meditation, listening to podcasts and walking laps around the ward helped to pass time and gave me peace of mind.

The first round of chemo I didn’t know what to expect. There is a lot you can do or not do that will affect how you feel and how you experience chemo. The treatment makes you uncomfortable and sick and you spend most of your time trying to figure out how to be okay. Wearing my own clothes and bringing food from home were things I did to try to feel better.

I started chemotherapy on January 14, 2022. My family and I were anxious and we tried to prepare as best we could, but we really didn’t know what to expect. I continued a full load of college classes during all 6 rounds.

I had six rounds of AIM chemo for 5 days in hospital every month from January - June 2022. During this time, I had two scans that showed a reduction in tumor size.

Things happened fast after my lung surgery. It was decided that I would begin AIM chemotherapy one month after surgery to treat the cancer systemically. I had to bank sperm, get my port put in and cut my hair. I also met with a naturopathic oncologist who prescribed supplements to help protect my body against the chemo and to fight the cancer.

Exactly 1 year after my first diagnosis the CT scan showed micro nodules growing in my lungs. I had lung surgery in December 2021 when I was 20 years old. The biopsy showed the tumor was Synovial Sarcoma. I had one 9mm and two 5mm nodules and several micro nodules. The 9mm nodule was removed.

For the next year I lived a normal life. I hung out with friends and family, attended college and surfed. I had scans of my leg and lungs every 3 months.

My leg took a couple of months to heal. The healing process felt slow, but I was still able to continue my college classes and spend time with friends and family.

In December 2020, I had surgery to remove the 3.2 x 2.5 cm cancer tumor and a vascular malformation that sat beside the tumor. The surgery was successful and there were negative margins. I had scans every 3 months, which included watching micro-nodules in my lungs.

I was disagnosed with Synovial Sarcoma after a biopsy in November 2020. I participated in a clinical study on radiation treatment and had 5 days of radiation at 6 rems per day for a total of 30 rems prior to surgery for removal of the primary tumor behind my knee.

It was 2 more years before the pain was so bad I could hardly walk. I noticed a protrusion in my knee area and went back to UCLA for more testing in October - November 2020 when I was 19 years old.

September 2018 The second embolization on my knee at UCLA Medical Center. The doctors did not believe I had cancer at that time.

I had the first embolization on the vascular malformation behind my knee in June 2018 when I was 16 years old. Doctors hoped this would ease my knee pain.

March 2018, when I was 16 years old, I had the 1st MRI that showed a formation behind my knee. I was given a tentative Synovial Sarcoma diagnosis, but doctors changed the diagnosis to a vascular malformation. After years of pain I was relieved to know this was not all in my head.