A lot has happened since I last wrote. You'll need to sit down for this update. I'll keep it short but the news isn't sweet. Plus, I'm about to head into surgery...
I was told 3 terrible things on March 22 by the radiation oncologist. We weren't really prepared for any of it.
1. I was not a candidate for radiosurgery to the one sizeable nodule growing in my left lung, in light of some new findings :(.
2. The cancer has spread to my bones (several areas of my spine, pelvis and left femur) :(.
3. Most devastatingly, the cancer has also spread to my brain (numerous tiny intracranial lesions) :( :(.
Shock. Disbelief. Devastation. Tears. I cried. We cried. We certainly never expected the few symptoms that I had (more headaches, knee and back pain), would amount to THIS. I felt like I was given my cancer diagnosis all over again. It was all new territory (bone and brain). What we don't know drives the fear within us...
And here's what happened since then:
1. We decided that we don't like my new radiation oncologist, who told me because of the number of brain lesions, my only option was whole brain radiation, which was going to "detrimentally decrease your quality of life".
2. We consulted Dr. Block (in Illinois) who was glad I didn't jump into whole brain radiation treatment because of its longterm side effects. He referred us to a neurosurgeon who has treated countless brain lesions on countless patients with Gammaknife successfully with few side effects.
3. We got in touch with the neurosurgeon (also in the Chicago area), who is open-minded, positive and friendly. He said Gammaknife would be an option for me when we were ready.
4. We all agreed (my medical oncologist, Dr. Block, the neurosurgeon, and even the radiation oncologist) that the brain lesions were small enough that I could proceed with immunotherapy and rescan the brain shortly after to determine the next course of action.
5. I started immunotherapy with nivolumab on April 1st (4 infusions now completed). I also restarted Iressa (gefitinib) at the same time, with support from my medical oncologist, even though it's not standard of care. I figured Gefitinib would be a good (not great because of past resistance) back up while waiting for nivolumab to "kick in". Iressa is also no longer covered by the province since it is only a "first line" drug so we have been trying to source a supply.
6. Six weeks after my March brain MRI, I underwent another to see the response or lack of to Iressa and/or nivolumab. Neither of them seem to have crossed the blood brain barrier in the 6 weeks since I've started this new treatment :(. The brain lesions have grown in size and number. We were very disappointed... And scared :(.
Within a few days of the news of the brain lesions progressing, my appointment to have Gammaknife surgery was booked. Flights, accommodation and car rental was booked shortly after.
It's May 16th, and here we are waiting for Dr. H (neurosurgeon) to finalize the Gammaknife treatment program. I am drugged up and set up (headgear) for the procedure...
Thank you to all my friends and family who have helped us prepare for this trip, for your words of support, your prayers and positive thoughts. My intuition tells me this is the best treatment option for me right now so we are glad we could arrange this trip so quickly. But this my brain being treated and it's scary, because it's going to get zapped in multiple places and there are potential side effects to consider. Please keep sending prayers, healing vibes, positive thoughts, etc our way:). Much love and gratitude to you all.
