Hey everyone! So I know it’s been a while since I have posted and that's because nothing has really been going on until this past week. Aside from a few days of fevers, I have been feeling pretty good. Still tired, fatigued, and sore but that just comes with having cancer.
However, this past Wednesday I had an MRI and follow up appointment with the neurosurgeon that did the gamma knife procedure. Unfortunately, the results showed between 15-20 new spots of tumor scattered throughout my brain. Each spot was less than a centimeter and I have no neurological symptoms yet. But this means that the BRAF meds that I have been taking are not as effective or are not working as they were before. The tumor on the back of my head has doubled in size since the last MRI was done in December, causing my head to feel very tight and sore and preventing me from sleeping well over the past week or so. It is probable that some of my other tumors have grown but I'm not entirely sure. As a side effect of the BRAF meds, I have also noticed that my hair has started to fall out.
At this point, no firm plans have been made for the next step in treatment. I am meeting with my oncologist on Tuesday to go over the implications of this new development and discuss our next attack strategy. After talking to the neurosurgeon and radiation specialist, it is looking like I will have some sort of further radiation treatment on my head. The two treatments that are being discussed are radiating my whole head or doing another gamma knife procedure. Each one has its pros and cons. Radiating my whole head would be able to treat all of the cancer spots that showed up on the MRI as well as any cancer cells that are too small to be detected by the scan. However, radiation to the whole brain would also be radiating the healthy brain tissue and is associated with significant side effects like short term memory loss and some cognitive impairment. Because it is such a large amount of radiation exposure, whole head radiation is only normally done once to prevent further toxicity to the brain. Gamma knife, on the other hand, is a very focused beam of radiation that can be targeted to specific areas of the brain that are cancerous while limiting the exposure of healthy tissue. However, the means that it is limited in the size and number of areas it can address at one time and can only target what is seen on the scans. So there is no guaranty that there will not be more tumors in a matter of months treatment.
The other issue is that since the BRAF (targeting the mutation) meds are not doing their job anymore, so we are asking, “What is the next step for treating cancer systemically?” Most likely I will be returning to some form of immunotherapy with the hope that it will be more effective than the last time. That will be discussed in the appointment on Tuesday with my oncologist. If we do end up starting the immunotherapy again, I already have an infusion appointment scheduled for that afternoon. I had been hoping that I would get a little more use out of the BRAF meds before they became ineffective but the fight will go on. This feels like a setback but thankfully, there are still treatment options out there.
So going forward a few prayer requests.
Wisdom - as we are trying to make decisions about the road ahead.
Healing - That the treatment will work
Peace - as we all come to grips with the implications of this turn of events
Health - sleep at night and energy in the day
Well-being - more of an appetite and less depression symptoms
We continue to pray for you. It must be hard to realize that the drugs aren't being effective as you had hoped. There are so many decisions which require your reliance on the Lord. May He continue to be your strength, your joy, and your focus. You speak of depression and I pray that you will not lapse into it. We will agree with you for the prayer requests above. Continue to remain strong! We love you and pray for you!
Thanks for the update, Dear Emily! I'm praying for healing...for God's continued presence; which is your peace. You are truly loved and your testimony is inspiring...hang in there and please keep us posted!
Oh, Emily, what a difficult turn of events. I am so sorry you are having to deal with all this. It is a heavy cross to bear! You are always in my heart, my thoughts, and my prayers. Be kind to yourself...rest even during the day and allow yourself the freedom to feel disappointed, sad, and even depressed. It is normal. God still holds you in the palm of His hand. Luv you!
Nancy
Wow that had to be tough news. You've been doing so well. We will continue to pray. As you requested we will pray for wisdom, healing, peace, health and well being. I think we'll add a miracle. Thank you for keeping us up to date. My heart hurts for you. It is a tough journey and faith aside, we are human. Love you.