My experience undergoing Gamma Knife Radiosurgery for Metastatic Melanoma Brain Tumor at MD Anderson Cancer Center

Luckily the original five brain lesions I had, when diagnosed with Stage IV Metastatic Melanoma in April 2018, were eliminated with the help of the intravenous treatment of ipilimumab and nivolumab combination immunotherapy.  There was originally conversation about proceeding with Gamma Knife Radiosurgery on those five brain lesions.

That was the most effective response to the initial immunotherapy treatment.  The other lesions, or tumors, in my lungs and liver were shrinking, but not eliminated the way the ones in my brain had responded.  So it was a good call by my Medical Oncologist to hold off on the Gamma Knife and see how the brain tumors responded to the immunotherapy.

Unfortunately a scan months later showed a new tumor in my brain.  This time Gamma Knife Radiosurgery was being called for right away to use radiation on the tumor.  My Medical Oncologist didn't seem very concerned, stating he thought the Gamma Knife procedure would zap it right away and that would be that.  It was comforting to think of it as such a definite solution.  So my husband Harvey and I set off for the next journey in all of this.

It's always unsettling when you are posed with new information and procedural details related to a new diagnosis or treatment.  Of course we immediately turned to the internet to do our own research about the procedure.  With a wealth of information online we were able to understand that the procedure involved placing a frame on the head that allows a specialized bowl looking device to be attached to the frame.

With the frame mounted to the skull with four pins, there would be another MRI done so that the alignment of the exact location of the tumor could be calculated.  They could then customize the bowl looking device so that only certain pin point locations on it would have radiation pass through aimed at the exact location of the tumor.  There are roughly two hundred beams of low dose radiation that can be used.  When each of the beams of radiation come together in the exact location of a tumor it provides a high dose of radiation in that exact pin pointed location.

So we started the appointments to prepare and the first step was having a consultation with the Radiation Oncologist.  She reviewed the prior MRI and discussed the details of the Gamma Knife Radiosurgery procedure, including just about everything we had already learned online.  It was pretty straight forward, we would arrive very early the morning of and after completion of the procedure there would be a couple hours of observation before being released.  The main concern to be watched for after the procedure is bleeding in the brain around the tumor site.  There are other potential side effects, but based on the location of my tumor she didn't seem to think I would experience any of them.

The next consultation appointment was with the Neurosurgeon.  The Neurosurgeon is who places the frame around the head and tightens the four pins to the skull to hold it in place.  We were told that because the pins go through the muscle, tension headaches and a feeling of tightness around the skull was the most common thing to deal with post procedure.  They also talked about the potential for what looks like bruising around the eyes within a few days following.  We felt that we understood the Neurosurgeons part and that was that.

Midnight before the procedure day was the cut off for eating or drinking anything other than water.  We arrived at the MD Anderson Cancer Center main building at 6:15 am to begin preparation.  They had given me a medical scrubs outfit prior so I arrived wearing that.

The very first step in the process was having the frame installed on the skull.  They injected a numbing agent in the four areas that the pins were to be screwed in.  The installation wasn't painful, more of a sensation from the pressure being applied to my skull.  It was scary having something screwed to my skull.  A Xanax taken prior helped a little with the anxiety of it all. 

Straight from there we headed to get the new MRI of the head so that the frame positioning could be calculated.  Apparently they take a specialized approach to the views captured in this MRI, since it's used for programming and setup of the Gamma Knife machine.  It took a little longer than a typical MRI of the head.

Now it was on to get as comfortable as possible in a bed with this metal apparatus around my head.  This was also where they said I would return after the procedure.  I had previously placed an order for food that arrived once I was laying down, so I was happy to have some breakfast while I waited.  Within about an hour it was time to head to the area where the Gamma Knife procedure is done.  I waited about thirty minutes for my turn and then they had me come in for an initial double check of everything.  After that it wasn't long before it was my turn for the procedure.  If I remember correctly there were six patients in rotation for that days Gamma Knife procedures.  They said that was a pretty low number and that they often have as many as a dozen.

The Gamma Knife machine looks kind of like a scanning machine.  The bowl looking device was placed on my head and I was slid into position on the bed that rolls into the machine.  They got my head positioned and everything set to start.  It took about 30 minutes to complete the procedure.  The Radiation Oncologist and the Neurosurgeon were present throughout the procedure along with multiple other technicians.  As soon as I was done in the Gamma Knife machine they took me to another room and the Neurosurgeon removed the frame from my skull.

Back to the bed I had been in previously and to my leftovers from breakfast.  I didn't feel anything during the Gamma Knife procedure.  After the frame was removed I felt a relief of the tension from the four pins.  So I snacked a little more and then fell asleep for a while.

About two hours later they started preparing to release me.  We were staying in a nearby hotel so we only had about a five minute drive.  We typically stay in Airbnb lodging, but for this trip we wanted to stay as close to the hospital as possible since we had to arrive so early.  We made our way back to the hotel about 2:00 pm and went straight to sleep.

When I woke up several hours later I had a pretty severe tension headache.  The best way I can describe it felt like a very tight rubber band around my head.  We tried to sleep some more and about 8:00 pm Harvey woke up and asked if I was hungry.  Unfortunately the day of the procedure fell on his birthday.  We ended up ordering some delivery of good Thai food.  Luckily they also had Harvey's favorite carrot cake, so the day was saved for the birthday boy having his birthday dinner and cake in our hotel room that night.

Because we live about four and a half hours from the hospital, the doctor asked that we stay locally for twenty four hours after the procedure.  The next afternoon we loaded up and headed home.

In the days following the four points that were penetrated on my head were very sore and I continued to have a headache with the sensation of tension, like a rubber band around my head.  That lasted for about ten days.

Roughly a month after the procedure I experienced some very severe headaches and nausea.  I ended up contacting MD Anderson to tell them about the symptoms and they wanted me to get an MRI of my head right away.  Apparently they were most concerned about the status of my pituitary gland in my head.  The MRI returned nothing abnormal related to the pituitary or anywhere else.  They decided to start me on Hydrocortisone, which is a form of steroid, to help with inflammation and also help stimulate the production of cortisol.

Various uncomfortable symptoms occurred in the weeks following.  The most concerning was a feeling of numbness in my right foot and leg.  Almost like the sensation when your body part goes to sleep and has a tingling sensation.  The problem with symptoms, when your going through cancer like this, is you don't know what any particular side effect may be coming from.  Having the effects of ipilimumb, nivolumab, morphine, steroids, and radiation to name a few, it is very difficult to know for sure what side effects could be related to.

We returned to MD Anderson roughly six weeks after the Gamma Knife procedure for follow up scans.  The great news is there was no evidence of new disease and there continued to be some shrinking of various tumors among the rest remaining stable.  Although, in the MRI of the brain they were unable to clearly see the formerly radiated tumor site.  It was surrounded by blood that was making the whole area cloudy in the images.  I already had a follow up appointment scheduled with the Radiation Oncologist a week out, so I had to wait and return to Houston to discuss the brain portion with her at that appointment.

At the appointment with the Radiation Oncologist she reviewed the symptoms I'd been experiencing with headaches, nauseous episodes, and numbness in my right leg and foot.  She determined that she suspected a blood vessel had broken around the tumor that had been radiated.  She felt strongly that the date in December that I had experienced a rapid onset of those symptoms correlated with when the blood vessel had ruptured causing the blood around the site of the tumor that was treated.  The good news was she thought the numb sensation would go away as the brain heals.

I had my Hydrocortisone dosage increased immediately to help my brain clear the excess blood.  The plan was set for me to return for another MRI of brain in about 45 days, in hopes the blood will have cleared for a clear view of the tumor location that received the Gamma Knife Radiosurgery.  Looking forward to hearing that the tumor was destroyed and only scar tissue is left, fingers crossed!

That was my experience undergoing Gamma Knife Radiosurgery for a brain tumor at MD Anderson Cancer Center.  I have to brag on MD Anderson every chance I get.  Although the whole experience of Gamma Knife is quite an ordeal, they made everything straight forward and I felt completely informed.  The process itself was obviously arranged to be as pleasant for the patient as possible.  Every employee and doctor there are so caring.  We are so thankful to have the resources they've provided in this journey fighting Metastatic Melanoma since March 2010.

~Given Lemons - Make Lemonade~
Love to all,
Erica
www.Harvster.com 
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