The Latest News: A Trip to MD Anderson, Florida and More

stephanieriordan23
May 10, 2024
3 min read

We found out I do not have the ESR1 mutation but I do have several other mutations which are PTEN, FGFR1, NF1, NBN NSD3, and ZNF703 and none of them have a targeted treatment for them yet. Therefore, I will be starting the chemo pill called Xeloda and stop taking Letrozole and Kisqali. I started Xeloda on May 7th. The biggest side effects are hand and foot syndrome which can cause redness, swelling and blistering on my palms and soles of my feet as well as fatigue, nausea and vomiting- fun times. I will take it for two weeks and be off of it for a week to allow my body some time to heal. The pharmacy told me it will be $150 every 3 weeks and there isn’t anything to help assist with the cost. However, my first pickup while in Florida they didn’t charge me for it, so lets keep that going.

My MD Anderson appointment was moved up to April 22nd, we really liked the oncologist. He had me do a bone scan, CT scan and xray of my right femur. Scans continue to show only mets to my bones and my femur did not look like there was a concern for a possible fracture at this time. He did the xray due to it being a weight bearing bone and he was going to send me to an ortho oncologist if it looked like it may be close to fracturing but its not, yay! I also met with a clinical trial physician who presented my case in the grand rounds and determined a clinical trial that they would recommend me to start on if Xeloda does not do well for me. My understanding is that my next scans will be in July/every 3 months.

My cancer marker numbers and signatera numbers are the highest they have ever been which is scary to look at but for the most part I still feel good. I am having some low back pain with too much activity or lifting. I am stepping back from working inpatient rehab for a bit due to it being more physical and causing some back pain. I will continue to work a couple of days a week in outpatient pelvic PT.

I completed the initial labs and paperwork for the holistic team and will be meeting with them on May 16th to go over next steps with them. One of the suggestions they have mentioned and I have read about is the benefits of an infrared sauna which yall have helped raise enough money so that we will be able to purchase one for the house. Thank you!

We left for Florida for out Manda Strong trip on April 28th and have had the best time. I will do another post on our amazing trip with more pictures soon.

I have been overwhelmed with all yalls help and support, it has helped us not feel so anxious with finances as I have not been working as much as well as all the expenses to fight this disease. I believe there are a couple spots left in my friends, Jennifer Kirk’s photoshoot to help raise money to help with the expense with my holistic team. She has also organized other vendors to be there at Lemondrop studios in downtown Mckinney from 1-4 this Saturday, May 11th, would love to see yall! Below is the link to sign up for the photoshoot and to continue to help with raising funds for the holistic team and offset living cost while not working as much.

You can go to Jennifer’s website to book a time slot if you’d like to reserve a mini session!

https://jenniferlkirkphotography.com/mini-sessions

As well as a place to donate, that my coworker set up in January while I was going through radiation. http://spot.fund/w4njqsc

God’s Hand in my Journey

We were blessed with an amazing trip to Disney World by the Manda Strong Foundation. They are having a golf tournament on May 20th to continue to raise money to send mom’s with cancer to make memories with their children. https://mandastrong.com/upcoming-events/
While in Florida we spent time with Tom’s grandpa Dewey, who we haven’t seen in we think 10 years and my family- many who hadn’t met our kiddos before.
MD Anderson appointment being moved up by several weeks
God’s perfect timing in all of this

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