Hi everyone! Today I'm happy to present the story of lady who is a friend of our page - her name is Rae. Rae has undergone Cyber-Knife treatment for her Schwannoma, and she was kind enough to jot down her notes as the treatments progressed. Since Cyber-Knife is a kind of treatment that people commonly ask about, we thought it may be useful to share Rae's thoughts in the form of a blog. Cyber-Knife is a kind of targeted radiotherapy. It is used to try to shrink tumors, and it is also used to prevent the further growth of partially removed tumors. We encourage you to consult with you neurologist or neurosurgeon about any possible treatment with Cyber Knife - and we hope you find this firsthand experience helpful. Thanks! - Neil
Click here for a description of Cyber-Knife:
http://med.stanford.edu/neurosurgery/patient_care/radiosurgery_cyberknife.html
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(Rae has a Schwannoma at C6 - C7 )
Prior to the first treatment, they made the mask which was a little frightening. It felt like a warm wet pillow held tightly on my face. that was left in place as they did a CT scan. This is what they use to put in the cyber knife machine to pin point the radiation beams on the tumor.
Treatment number one started with them giving me a 0.5 mg dose of Ativan when I arrived at the cancer center. I eventually got another 0.5 mg dose prior to being placed on the table. They strapped my arms and legs down and then placed the mask on my face. It was OK until they anchored it down. That was horrible. Long story kinda short..lol...the Ativan did nothing. They gave me Benadryl which was also not affective. I could not tolerate the mask over my face so they cut out the area of my eyes and nose. this made it much better.
After about 10 minutes into the treatmemnt the back of my head was burning. Once they start the treatment they cannot touch you or reposition in any way. Treatment number 2 was better as far as the pain goes...but not much. That brings me to treatment number 3.
Prior to my treatment I had a lot of back, neck, and arm pain and I took one dose of 10/325 hydrocodone. Then took the valium 30 minutes to the treatment. I still had pain in the back of my neck and head but it was bearable.
The treatments of 4 - 6 were not much different then the previous 3. Still very painful however I did take one norco 5/325 tablet on treatment 5 and two tablets on treatment 6. Treatment 6 was tolerable. Now, I am just waiting for the 3 months to re scan to see if the tumor is shrinking. Today the pain, tingling, and numbness in my arm seems to have increased. I was warned of this so I am trying to stay positive.
The doctor has said that they will do scans in 3 month intervals. The doctor at the cancer center has told me to not be alarmed if within the first 6 mo or so we see the tumor growing and my symptoms increasing ( that is really discouraging) but after that we should see the tumor shrink. They are hoping it will shrink and symptoms are relieved or it is possible the tumor will shrink but I still have symptoms. If that is the case I may then have surgery which will be less invasive.
Since i have finished my cyberknife treatments I continue to have pain and numbness. Some days are worse then others. I dont have a follow up MRI until May as the doctors say that in the first 3 months they generally see growth in the tumor.
Update from Rae, 6 months after
Hello...just thought I would give you an update. It has been 6 months post cyberknife. I had another MRI on the 31st. The tumor has not changed. Remains the same size. My neuro surgeon says that we will MRI again in 6 months. It may take a full year to see change. I continue to have pain and numbness.
