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Other experiences with whole brain radiation and stereotactic radiosurgery

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Barbara’s stereotactic radiosurgery (SRS):  

I tend to be very anxious before a plan is in place, then seem to be able to follow through with treatment choices reasonably calmly. When I was given the consent form for SRS, and the nurse started handwriting in further complications, I almost backed out of the whole thing, however.  It was a very scary list of potential problems.

Not a pleasant day, but manageable. The Gamma Knife procedure requires wearing a head frame, which is heavy and needed to stay on for several hours while planning took place.   Once treatment was done, the frame was removed and I walked out to the parking garage and was driven home.  Rested for the rest of the day, took it easy the next, back to full schedule after that. There were no side-effects that I was aware of, except fatigue the day of the procedure.  

Three more brain mets were found 8 months later.  Again, they treated with SRS.  Follow up brain scans have been clear for the last 27 months.

Mary’s stereotactic radiosurgery:

CyberKnife treatments are a piece of cake. The mold for the face mask in preparation for the treatments is mildly unpleasant. I had both my sister and partner present in the waiting room along with my medical directives at the time of the first treatment. The CyberKnife facility is very feng shui, dimmed lights and very soothing decor. The staff was very kind and reassuring.

I was introduced to "Lenore," the CyberKnife which is similar in appearance to the gooseneck scope that the dentist uses when taking jaw x-rays. I was apprehensive about the face mask being too tight, my nose itching, and coughing which might cause the CyberKnife to damage some of my remaining healthy brain tissue. I was advised that it was okay to cough since they are taking scans throughout the procedure. Much to my amazement, there were large cutouts in the mask around the eye locations. This made it much more comfy.

I was told how many tumors would be treated, the area of the brain to be treated, and how long it would take (about an hour). I was advised that the CyberKnife would move to numerous locations around my head but would remain some distance from my face, I would not feel anything but some people have reported seeing a blue light during the treatment but not to worry if I saw such a light (just an excited nerve ending or something). 

I was offered a choice of music and again reassured that I would be fine. It was far more pleasant than a scan, no contrast IVs, no loud annoying noises, no insertion of the body into a small tube. My biggest concern during treatment was my head movements and the possibility that "Lenore" would be aiming her beams at the wrong spot.

It has been about five months since brain mets diagnosis. I still have brain mets according to first follow-up scan. They appear to be stable or smaller. No new mets were detected, untreated mets were stable, and there was some indication of reduction in size and tumor cell death in treated tumors. I have not had the second two-month follow-up yet.

Deanna’s stereotactic radiosurgery: 

It was a piece of cake.  I was out of bed the next morning and in the shower when my doctor came to see me.  He was just beaming to see me moving around and feeling so well. 

The worst part was putting the frame on my head.  I was given Versed, but didn't feel a thing.  They started to numb my head and that was painful, but not too awful.  The frame was uncomfortable, but doable.  After another MRI, I was given a room while the docs planned my treatment.  I was taken down to the Gamma Knife procedure room and it was a little scary.  There were large metal helmets with holes in them and I would be attached to one of them.  They would slide me into the machine and with attached headphones I kept falling asleep.  There was no noise so it was easy to relax, especially with a little help from Ativan. The whole treatment lasted about an hour and half and the frame was removed and I went back to my room and went to sleep.  My head stayed numb for a couple of days and that felt odd.

After 8 months, some (lesions) are gone, some are stable.  I am doing very well.

Barb’s whole brain radiation:

The whole brain radiation itself was no problem. Several weeks later I lost the hair on my head and was really tired all the time.  I had no appetite for about 2 months.

Since it was a clinical trial, there were 2 follow-up MRIs. The response to whole brain radiation was very good, all the smallest tumors disappeared and the larger ones shrank a very good amount

After 17 months some new ones have just shown up on a 'routine' scan (no symptoms).  I'm going to meet a neurosurgeon  and a gamma knife doctor tomorrow…

Elizabeth’s whole brain radiation (WBR), followed by stereotactic radiosurgery:

I found WBR the most exhausting treatment I've ever had compared to any chemo regimen. I needed to nap daily and my thoughts weren't very clear. I was also less talkative. However, I returned to my normal self within a few months. WBR was scary and exhausting but not painful. I didn't like feeling so mentally dull. Stereotactic radiosurgery to the brain was a little scary because of the halo to immobilize my head. However, the procedure was much easier than WBR.

I have had recurrent lesions. I started on the Lapatinib/Xeloda expanded access trial in Sept. 2006. At 3 months I had global improvement but at 6 months, I had progression of lesions.  Brain met diagnosis was about a year and a half ago. I do still have some small brain mets--stable as far as I know--but I'm due for a scan. I was doing fine until about 2 months ago when the spinal cord tumor, growing unchecked, started causing pain. I had fatigue, hair loss and memory problems, all of which resolved in time. 

Currently, brain and spinal cord are still my only sites of metastases. I am getting weekly low dose cisplatin, continuing lapatinib, taking Lupron shots and Femara. I'm also on Decadron and pain meds for my spinal cord lesions. I am having pain issues related to the spinal cord tumor and awaiting a pain management consult. Also, I get 5 mg of Decadron a day, which interferes with the effectiveness of the lapatinib.  My doctor will be titrating the lapatinib dose up and pain management will have the goal to get me weaned off of the Decadron. 

Christina’s whole brain radiation:

Treatment itself was just fine.  It was painless and non-eventful. Hubby drove me to daily treatments.  Fatigue didn't "hit" until about two weeks after last WBR and hair fell out week after I finished WBR. I do sleep better now 4 months post WBR, but my writing is labored, balance affected and it feels like I had a mild stroke.  Hubby won't let me drive any length of time because of it (worries too much). 

Hair is just now (4 mo's post WBR) growing in, and in patches.  Memory has not been affected at all except that I forget things more often which I attribute to old age anyway and had before WBR!

I just did follow up MRI couple weeks ago and both radiological and regular oncologist said that it was "clear".  Some small expected residue of the spots, but nothing to be concerned about.