More Than a Bump in the Road

 I've been very lucky to be able to share so many positive posts and updates through the years.

It seems like I need to give a warning with this update. 

I took a chance switching my lung cancer treatment to immunotherapy. After several months, my cancer is progressing. I was concerned about quitting Osimertinib/Tagrisso, the targeted therapy that broke the blood brain barrier. It was necessary to quit because it doesn't work well in combination with nivolumab/Opdivo, my immunotherapy.

I now have a brain met. This is the first time in eight years to have cancer activity in the brain. 

I also requested a biopsy of my CSF (cerebrospinal fluid) when I had my shunt surgery.

A lot of my symptoms sounded like hydrocephalus symptoms. But at the same time they sounded like symptoms of leptomeningeal disease. This is when cancer spreads to the CSF.

CSF  is cerebrospinal fluid.

It flows in and around the brain and spinal cord. It's difficult to treat because it is not like a tumor or nodule you can zap with radiation.

The biopsy results showed atypical cells that are suspicious for malignancy.

I was going to have my immunotherapy infusion yesterday. I reported some new numbness in my glutes and discussed how much I sleep in a 24 hour period. 

My oncologist canceled the infusion and strongly suggested I be admitted to the hospital to get a full spine MRI and a chest CT scan. 

I wasn't able to be admitted yesterday before making arrangements for my dog.

I arrived this morning. Here's a new Brutus pic from today. It's the first time for me to "meet" the ER Brutus.

I should be getting my tests in the next couple days and then will be discharged. I don't know how soon I will get results from the tests. I'm guessing I'll be gone and home before I know if they found anything that is causing the numbness. 

I've already met with the radiation oncologist about the brain met. I had a choice of Gamma knife surgery or stereotactic radiation. I will need to have a radiation mask fitted for either procedure. I picked Gamma Knife because I can have the mask fitted the same day of the procedure. That would eliminate another trip to Ohio State to complete radiation. My fingers are crossed to be able to get brain radiation during this hospitalization. 

At this point,  it sounds like I'm done with immunotherapy and there is no other options for cancer treatment. 

My oncologist also suggested for me to look into and speak to someone about hospice care.

I'm okay with the thought of hospice. If I'm out of treatment options and I'm going to live a period of time without treatment,  I'd rather be comfortable and have extra help instead of living in pain and struggling.

I've been basically sleeping and resting for the last 3 years. I'm sick of being sick. I'm sick of sleeping about 16 hours of  of my life away every day. 

I'm not giving up. I'm being forced to give in to the lack of needed treatments. Research and development isn't happening fast enough for me. 

I will keep you posted with any more updates and my final choices and decisions.