Leptomeningeal Disease

Today is a month since I was admitted to the hospital due to finding the 3 small metastatic lesions in my brain. Originally the plan was to do 15 rounds of whole brain radiation but my medical oncologist wanted me to get a second opinion which made me feel better because the thought of whole brain radiation for 3 little tumors seemed a lot to me. Looking back now I thought my brain was so sensitive in catching those small lesions with my symptoms of a bad headache, nausea and vomiting but those symptoms turned into a whole new diagnosis. Turns out I actually have leptomeningeal disease (LMD) which is a rare complication of cancer where the cancer spreads to the membranes surrounding the brain and spinal cord. About ten days after being discharged from the hospital I started having vision issues. At first I just felt out of my body, the feeling was hard to explain. I thought it may be that I had been on steroids consistently for 2 weeks and that was making me feel off, especially with the lack of sleep it was causing. However, the more I paid attention I found I was having double vision. My right eye was not moving past midline and I was having to compensate to focus when looking to the left. Thankfully that same day the vision symptoms happened I was getting scheduled to meet with the brain metastatic team at MD Anderson the following week.

On March 26th we went down to Houston to have another brain MRI and PET scan completed. On March 27th we met with the brain metastatic team at MD Anderson which consisted of a neurosurgeon, radiation oncologist and medical oncologist. We were with them for over 2 hours as they each came in and saw me and then discussed my case. The neurosurgeon was great at going through my imaging and tracing my third cranial nerve which was clearly not working now. However, based on the imaging you couldn’t see a reason why it wasn’t working. He also explained that my brain tumors were so small and would not expect to be causing the symptoms of my headache, nausea and vomiting. Therefore, they wanted to do a full spine MRI to rule out some differential diagnosis. So we got to stay another day in Houston for imaging the next morning. They called us within 30 minutes of leaving the scan to tell me that there was a spot on my T11 concerning for LMD. In order to officially confirm LMD they do a lumbar puncture to see if metastatic cells are in the cerebral spinal fluid. However, there is a high false negative for this and they will do up to 3 LPs to try and confirm the diagnosis as the gold standard. During these LPs I also met with the neuro medical oncologist at MDA who was great at explaining LMD, expectations of symptoms and treatment planning. I ended up having to do 3 LPs but no metastatic cells showed up in any of them. However, based on my spine MRI and my neurological symptoms progressing over the past two weeks they still believe I have LMD. She told me since I am “so functional” still it is best to start treatment as soon as possible due to the nature of this disease progressing quickly. My vision is getting worse, my hearing is slightly muffled on my right side, I am having some numbness on my face, some midback pain and just feeling generally weak and fatigued. The MD Anderson medical oncologist officially told me I could not drive because of how bad my vision has become. But we now have a diagnosis and a plan in place, praise the Lord!

MD Anderson doctors were able to talk to UTSW brain and spine radiation oncologist and I will be able to be treated at UTSW for everything. The first part of treatment will be whole brain and spine radiation. I will be getting 10 rounds of radiation which will start on Monday, April 14th. I will go Monday-Friday for two weeks. The biggest side effects will be fatigue and nausea during treatment. Then he said the fatigue will last for a bit after treatment as well as having some short-term memory loss for 4-6 weeks after treatment, hair loss will happen 1-2 weeks after treatment and possible low appetite. It is a lot to take in but I feel good with the plan. I have been able to talk to two other women who have been living with LMD for 16 months and 3 years which gives me so much hope. They each did the same thing starting with the 10 rounds of radiation. After I heal from the radiation I will start chemo in my cerebral spinal fluid. I will get a port that will go directly to the CSF and have infusion two times a week for the first 8 weeks than 1 time a week for the foreseeable future.

The other part of the news we received while at MD Anderson is that my bone and liver mets are continuing to progress so I will be having to change systemic chemotherapy as well. I will be meeting with a medical oncologist on Friday at UTSW that focuses on just metastatic breast cancer. I won’t be able to do any systemic chemo until at least 10 days after I finish radiation to make sure I am healing well from radiation.

It has been a whirlwind of a couple of weeks but through it all I have felt so loved and cared for by so many people. I have the best family, friends and community surrounding us with so much love and support. In the young cancer community people talk about friends “ghosting” them because they don’t know how to handle a friend going through cancer but I have had the complete opposite. I started going to a moms of preschooler group in Melissa back in August and these women have been the hands and feet of Jesus. We have dinner for the rest of the month because of them and our church family. Our church family gathered for a night of prayer over our family while I had to go back down to Houston. I have my work family at Baylor Scott and White supporting us many ways. The best oncology PT came over today to work on my neck since I have been compensating so much for my vision. I did officially give up my last few patients I was still treating which is one more normalcy taken away from me but obviously necessary at this point. My work family at Medical City McKinney praying for me at work and sending the sweetest cards throughout this season even though I have not actually worked there since May due to it being too much on me physically.

Then there is the sweet blessing of having my family close by. I was down in Houston for 7 days out of 9 for all the tests and appointments I had to do. We decided to have Tom stay with the kids to keep everything as normal as possible. I was able to have sweet one on one time with my mom, Stephanie and Bryan to take me to all my appointments. Our lives are always busy with our kids but having this time together while we are all worried about my future was such a sweet blessing. Then lets talk about our sweet children. They have been incredible over the past couple of weeks. They are playing so well together, rarely fighting with each other and just being so sweet and lovey to me. Tom has been doing an incredible job still working even though he has this huge burden he is carrying and doing so much with the kids. It has been so nice being with all the grandparents, aunts, uncles and cousins that we are so blessed to live close to us in order to lighten the burden, I just love my family and friends so much and feel extraordinarily blessed.

Big Praise

• The timing of getting to this diagnosis, a lot of time it takes a long time to figure it out since it is rare and appointments were perfectly set in place so treatment can start soon.

Prayer Request

• Praying big for minimal side effects as I start radiation next week

• That neuro symptoms do not continue to progress too quickly as we wait treatment

• For the village of doctors that are now on my care team. Help guide their wisdom in taking care of me and coordinating care together.

• For this treatment to work, reverse my neurological symptoms and halt the growth of cancer in my bones, liver, brain and spine

• For my husband, kids, family and friends to not fear my future but have an overwhelming sense of peace that we are being held so tightly by our maker who continues to perform miracles.