Difficult new results: brain metastasis and gammaknife treatment

Posted by donnademps @donnademps, Aug 30 9:27am

After explaining how my cancer has metastasized to both lungs, liver and sleen, I have now learned I have 3 lesions in my brain, the largest 1.3 cm.
When I was accepted into a Clinical Trial aimed at my rare and aggressive HER2 mutation, I was told I would be unable to begin the trial if my cancer had metastasized to my brain.
I have been sent to the Brain Metastases in Princess Margaret. As soon as the results were posted, the main Oncologist of this trial was phoned me and started me on steroids and something for the side effects. These are great meds to stop the bleeding around these lesions. Also meds required to start before radiation, which I am hoping to start next week.
I was just supposed to have a meeting with the Brain Mets team, but due to the length of the drive, they were able to squeeze me into the very busy department that does all the tests required to start the radiation.
That included another brain MRI, brain CT, and the creating of a molded face, head mask required for the radiation. It is such an amazing hospital here in Canada for cancer.
We were devastated after reading the online results of my brain MRI. That was a very depressed, dark day for me and my husband.
Having said that, after getting to understand what the path I am now on, I feel far more positive, being ready for radiation by next week. The radiation is called Gammaknife, a new progressive and successful targeted radiation therapy and requires a special machine. There are only 4 such machines in Ontario at 2 hospitals, both in Toronto.
Sorry for the long chat, I am feeling very good about my upcoming radiation, when I previously I was so afraid of it. I'm encouraged about having a longer life with good "quality of life", as I live with my disease.
The most devasting piece of these brain lesions results, is that I have lost my driver's license for a year. I live in a rural area that has no public transit. I hate losing that piece of my independance. Is that the same rule in the U.S.? Likely depends on the state.
I'm so glad to have this forum to chat with serious, informative folks who have a better understanding about cancer disease and who share their valuable experience.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

As I am 6 days out of Gamma Knife radiation, so I can share my experience. The actual treatment wasn't difficult process, 2 treatments over 2 days. I had a mask made for me that was attached to the unit, so I was unable to move my head. Each treatment was around 1 hr. There was music of my choice which really helped me. I used the time to meditate and I may even had a nap in there.

For most of these past 5-6 days, I felt like I have had "static electricity" going on in my brain, like I felt very "buzzy". These symptoms were worse throughout the morning then slowly subsided in late afternoon.
I also found that my arms and hands were very shaky, but my guess is that those side effects were from the Dexamethasone steroid treatment I am on.
All of these side effects are diminshing as the week goes on.
Open for any questions.

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Here's a great quick explanation of the differences by a cyber knife (LINAC) facility. I would always choose gamma knife if it were an optional. There' is a reason why all NCCN member institutions except two offer it. There's no need to add extra margins to account for latency. 3mm might make all the difference in the world.

Won't add the link but Google
CyberKnife versus Proton Therapy versus Gamma Knife

Cyber knife Miami should be the first result. They a LINAC facility

My original place was to have gamma knife to my 3 Mets but they grew too much and ended up having a craniotomy followed by LINAC to the tumor bed. 1 Year later I developed cerebral radiation necrosis and lost all peripheral vision to the left.

REPLY
Profile picture for donnademps @donnademps

As I am 6 days out of Gamma Knife radiation, so I can share my experience. The actual treatment wasn't difficult process, 2 treatments over 2 days. I had a mask made for me that was attached to the unit, so I was unable to move my head. Each treatment was around 1 hr. There was music of my choice which really helped me. I used the time to meditate and I may even had a nap in there.

For most of these past 5-6 days, I felt like I have had "static electricity" going on in my brain, like I felt very "buzzy". These symptoms were worse throughout the morning then slowly subsided in late afternoon.
I also found that my arms and hands were very shaky, but my guess is that those side effects were from the Dexamethasone steroid treatment I am on.
All of these side effects are diminshing as the week goes on.
Open for any questions.

Jump to this post

Thanks for adding this update @donnademps. I'm glad that you are past the treatments. Now, we are all hoping for good news for you. When will they do a scan to see the results?

REPLY
Profile picture for edivebuddy @edivebuddy

Here's a great quick explanation of the differences by a cyber knife (LINAC) facility. I would always choose gamma knife if it were an optional. There' is a reason why all NCCN member institutions except two offer it. There's no need to add extra margins to account for latency. 3mm might make all the difference in the world.

Won't add the link but Google
CyberKnife versus Proton Therapy versus Gamma Knife

Cyber knife Miami should be the first result. They a LINAC facility

My original place was to have gamma knife to my 3 Mets but they grew too much and ended up having a craniotomy followed by LINAC to the tumor bed. 1 Year later I developed cerebral radiation necrosis and lost all peripheral vision to the left.

Jump to this post

@edivebuddy, Sorry to hear that you experienced that vision loss. The side effects can be scary. Has this impacted your daily life? Are you still driving, or doing other things that you are able to enjoy?

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I still enjoy life. Don't drive because it's too scary and I run into things often. I've had 5 year to adjust now and if I stay out of crowds you wouldn't know. It's actually a tiny bit better today than when it first happened. Then I could see only to the right. If I looked at you only the left side of your face was visible. Now I can see whole faces but still nothing left of the face. It's way less unnerving now.

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Profile picture for edivebuddy @edivebuddy

I still enjoy life. Don't drive because it's too scary and I run into things often. I've had 5 year to adjust now and if I stay out of crowds you wouldn't know. It's actually a tiny bit better today than when it first happened. Then I could see only to the right. If I looked at you only the left side of your face was visible. Now I can see whole faces but still nothing left of the face. It's way less unnerving now.

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@edivebuddy , it's amazing what our bodies and/or minds can adjust to. It sounds like you are safer letting someone else drive. You made me laugh. 🙂

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Profile picture for Lisa, Volunteer Mentor @lls8000

Thanks for adding this update @donnademps. I'm glad that you are past the treatments. Now, we are all hoping for good news for you. When will they do a scan to see the results?

Jump to this post

@lls8000
As far as I can see, I have stacked appt's including an echocardiogram, ECK, extensive blood work, an MRI and CTs (on 2 dfferent parts of my body) coming up at mid of next week. Starts on Wed the 23rd-Fri the 25th. If all goes well, seems like the Trial could choose my randomized treatment on Fri. At this point I don't "assume" this could happen, just hoping it will happen. I'll keep you posted.

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I checked the clinical trials page and Princess Margaret has teo clinical trials going on for her2 lung cancer and One is designed for patients with brain Mets the other needs the Mets to be stable. Do you have even More options

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Profile picture for donnademps @donnademps

As I am 6 days out of Gamma Knife radiation, so I can share my experience. The actual treatment wasn't difficult process, 2 treatments over 2 days. I had a mask made for me that was attached to the unit, so I was unable to move my head. Each treatment was around 1 hr. There was music of my choice which really helped me. I used the time to meditate and I may even had a nap in there.

For most of these past 5-6 days, I felt like I have had "static electricity" going on in my brain, like I felt very "buzzy". These symptoms were worse throughout the morning then slowly subsided in late afternoon.
I also found that my arms and hands were very shaky, but my guess is that those side effects were from the Dexamethasone steroid treatment I am on.
All of these side effects are diminshing as the week goes on.
Open for any questions.

Jump to this post

@donnademps will keep you in my prayers and God bless you...We fight this cancer any way we can and thank God they come out with new effective treatments ...You sound very brave and courageous along with being positive.....Im on my second lung cancer 31 years later so there is so much hope......

REPLY
Profile picture for edivebuddy @edivebuddy

Here's a great quick explanation of the differences by a cyber knife (LINAC) facility. I would always choose gamma knife if it were an optional. There' is a reason why all NCCN member institutions except two offer it. There's no need to add extra margins to account for latency. 3mm might make all the difference in the world.

Won't add the link but Google
CyberKnife versus Proton Therapy versus Gamma Knife

Cyber knife Miami should be the first result. They a LINAC facility

My original place was to have gamma knife to my 3 Mets but they grew too much and ended up having a craniotomy followed by LINAC to the tumor bed. 1 Year later I developed cerebral radiation necrosis and lost all peripheral vision to the left.

Jump to this post

@edivebuddy
Thanks so much for this extra information about radiation treatments.
I did google your suggestions and now understand much better the differences for each diagnosis.
For me, I can never have "enough' information and/or explanations regarding my cancer and the metastasis. I appreciate your explanations.

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