Review: Anne has been dealing with the ongoing side effect of pleural effusion (fluid around her lungs). After her second admission to the hospital, the doctors decided to give Anne a chemo break through the holidays. Two admissions later, a more long-term solution is needed to manage the fluid.
I braved another car ride with the “Jersey Driver” (aka Anne’s husband, Ray) to join Anne at the Seattle Cancer Care Alliance (SCCA). As Anne’s doctor will be retiring soon, she needs second opinions and to find a new care team she trusts.
Anne seemed to have more energy as we made our way to the specialty clinic, talked about Christmas plans and her son’s upcoming senior year, though the walk from the waiting room to the exam room left her heart rate elevated. Listening to her lungs, the doctor could not hear any fluid. (She had it drained days before.) He said the fluid could be a residual side effect of the chemo or it could be coming off of the tumors. He reviewed her latest CT scan (some growth and some shrinkage in the tumors). The results from her DNA test came back. No gene mutations they have treatment for. His recommendation is to change Anne’s treatment plan.
She has two choices: the third line of FDA approved chemotherapy for leiomyosarcoma (LMS), Yondelis, or clinical trials. Yondelis is administered outpatient via a pump over 24 hours. The trial requires approval into the program. New EKG, ECG, scans, and bloodwork and review of her medical history must be submitted. If approved, all treatment would be done at SCCA, a full day’s trip from Anne’s home. She would either receive Anlotinibus or Dacarbazine. If it is ineffective, she would be switched to the other.
As Ray drove home, they discussed each option and determined there really was no bad choice. They could fall back on the other if necessary. Travel time, convenience, and co-pays would all be taken into consideration. Because of the chemo break, Anne can take her time researching before committing to the next line of treatment.
While weighing her options over the next couple days, Anne had a dental appointment, eye exam, the pleural drain placed, found support from fellow LMS cancer warriors, and…. Got her tattoo! She has been working with artists since June on its design. A phoenix rising to symbolize her strength over cancer. Feathers made to look like sunflower petals because she likes their vibrant colors. Wrapped in a purple ribbon- the color of LMS. Anne says it was important to her to get this tattoo because “It reminds me to continue to fight the battle. Cancer is not easy to get through, and the Phoenix reminds me that I’m not alone in this journey. I need to power through this for my family.”
Anne decided to apply for the clinical trial. Since her diagnosis, her goal has been to use the hand she has been dealt to help others. If participating in the study will help, she wants to try. Applying is different than being accepted. She began scheduling her new scans and tests to get the process started.
Then came another day Anne has been planning since June: Christmas. Anne has always loved a great gathering of family and friends for Christmas. It is a time to spend catching up on everything that gets away from you during the year and reminds her of what’s important. Her family flew in from all over the U.S. to spend the holidays near her. Christmas day they all gathered at Anne’s house for a potluck brunch. Cinnamon rolls and biscuits and gravy are always a must-have dish at this gathering.
The New Year is a time to reflect on the past 365 days and look to the future. 2018 was not a year Anne would have imagined: surgery, two chemo regimens, hospitalizations, becoming reliant on others, scheduling life around appointments, and managing side effects. I truly believe in collateral beauty: there is beauty in the hardship. She has been overwhelmed by the outpouring of love, support, and gifts from friends near and far. She has met amazing doctors, nurses, and cancer warriors along the way. She was able to talk to Will Bruin! She was reminded she was a glow stick as she inspired everyone she met with her attitude and courage on this journey.
Follow Anne’s Journey with LMS
Review: Anne did not qualify for clinical trials and started the third line of FDA approved chemotherapy for leiomyosarcoma. March 2019 I took Anne out to lunch. Moving around took great effort and focus. At the restaurant, Anne barely touched her food and...
Review: Anne’ chemo treatment was no longer working and the side effect pleural effusion had become unmanageable resulting in a pleural drain being placed in her lung sac. The doctors decided to give Anne a chemo break over the holidays to give her body a rest and to...
Review: After repeated hospitalizations for pleural effusion (fluid around the lungs), Anne’s doctors have agreed to a chemo break. This will give her body a much needed rest and give her a chance to enjoy the holidays as much as possible. November 28 Despite not...