Liz’ Cancer Fight Club

Hi! My name is Liz and am now on my 8th time with a rare form of cancer (stage 4) called Solitary Fibrous Tumors. They are a form of soft tissue sarcoma that can spread anywhere in my body and are malignant (cancer). Sarcomas are only 1% of all cancers and the type of sarcoma I keep getting occurs in only 0.5% of all sarcomas--in other words it is very rare. 

I've been dealing with these solitary fibrous tumor sarcomas now since 2010. My doctors actually think they started in my teen years and took a long time to grow initially. 

Now, things are different. They have been recurring more frequently in the last seven years or so. Since chemotherapy is only between 5-15% effective at temporarily slowing down Solitary Fibrous Tumors, I've had all kinds of other treatments instead. I've had 4 full open abdominal surgeries, three different kinds of radiation (including 2 million microscopic Y90 radiation beads to treat 12 of 13 tumors that had metastasized to my liver about seven years ago), took part in a clinical trial at Dana-Farber. I had gone on a nationwide hunt for this trial. It involved immunotherapy and a checkpoint inhibitor—which unfortunately did not work with the tumors that I have. I’ve had cryo-ablations, electric ablation and radio frequency ablations. 

Despite the fact that I’ve had I have lots of complications from all of my treatments, I haven't let that stop me. I eat healthy, exercise regularly, meditate, and get acupuncture. 

My husband and I moved back to Massachusetts from Northern California a couple of years ago now where I went to Stanford Medical for my oncology, hematology, and numerous other doctors. 

Luckily I spent some time in nursing school and that has helped me tremendously--both to advocate for myself and to read every medical journal and clinical trial document I can get my hands on in regards to solitary fibrous tumors. I was able to spot a tumor on my scans that was missed by the doctors in California and I came back to Mass General Hospital in Boston, Massachusetts to have my 4th open abdominal surgery and have finally recovered from that. 

Now I have to start my battle once again and I really need your help. Between all of my cancer surgeries, countless trips back and forth to Boston from Western Massachusetts, moving back to Massachusetts from California, having to move again last November to be in an accessible apartment, etc., I need all of your help once again. 

I'm so grateful for everyone who has helped me in the past but I don't know how to do this without help. I'm unable to work due to this constant cancer battle. My husband, Jim, takes such great care of me but still has to work full-time at 77 just so that I can get the best care in the world. 

Now, for the hopeful part! I still have so much life and fight in me--as any of you who know me personally can attest to. I am still working on my giant bucket list--even though it's been slowed down and stopped and started so many times. I was finally able to go back to Westfield State University and at least take piano lessons this semester. I’ve been working on getting a second bachelor’s degree in music and I love it at Westfield State University! 

The biggest issue standing in my way is this poopy cancer! I am scheduled to have an exciting new type of cancer treatment at Johns Hopkins in Baltimore next week, October 14th, 2024. It’s a form of shockwave treatment called “histotripsy.” It’s a form of ultrasound. The doctor has said that in some patients, just treating one tumor in the liver might spur my immune system to kill all the other tumors that I currently have in my liver and abdomen again. I’m praying for that to happen.  If that isn't the case then I'll need more treatments and have a doctor in Dallas, Texas that I have great hope can help me, too.

We have been able to get free flights from an organization that donates free flights to cancer patients, but we will need help with the hotel and food and Ubers. If you're able to help at all, my husband Jim and I would be so grateful for any amount that you could donate. I'd also be so grateful if you would share this with your networks. Thank you and many blessings to you.

~ Liz