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.

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.

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Hello @donnademps
You are an extremely brave woman. I admire your courage that you have shown through all you have experienced.
Thank you for the update on how things have been going for you.
I’m glad you enjoyed some music and even possibly napped during your radiation.
Positive thoughts that the buzzy sensations and hands shaking subsides soon.
Hugs, 🤗 Daisy

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Profile picture for daisydays @daisydays

Hello @donnademps
You are an extremely brave woman. I admire your courage that you have shown through all you have experienced.
Thank you for the update on how things have been going for you.
I’m glad you enjoyed some music and even possibly napped during your radiation.
Positive thoughts that the buzzy sensations and hands shaking subsides soon.
Hugs, 🤗 Daisy

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@daisydays
thanks so much....yes, the buzzy can be annoying, but when I think about radiating my brain, it seems like a small thing to deal with it.

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Profile picture for pinsi @pinsi

@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......

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@pinsi
Thanks so much. I am so very grateful for so much research happening, especially for me with HER2/L775p mutation. Most of the research has been connected to breast cancer folks with this determination. Pharmaceutical companies know where the $ is (my son works as a software engineer for one of the largest companies in the world). I am so glad that Bayer has started this trial for lung cancer mutations and this is a Phase 3 Trial. I'm hoping to get some extra quality of life time with my family.

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Profile picture for donnademps @donnademps

@pinsi
Thanks so much. I am so very grateful for so much research happening, especially for me with HER2/L775p mutation. Most of the research has been connected to breast cancer folks with this determination. Pharmaceutical companies know where the $ is (my son works as a software engineer for one of the largest companies in the world). I am so glad that Bayer has started this trial for lung cancer mutations and this is a Phase 3 Trial. I'm hoping to get some extra quality of life time with my family.

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Donna yes there is always hope on the horizon and I will keep you in my prayers....
On Friday, September 18, 2026 at 06:22:41 PM EDT, Mayo Clinic Connect wrote:

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@pinsi
Thanks so much. I am so very grateful for so much research happening, especially for me with HER2/L775p mutation. Most of the research has been connected to breast cancer folks with this determination. Pharmaceutical companies know where the $ is (my son works as a software engineer for one of the largest companies in the world). I am so glad that Bayer has started this trial for lung cancer mutations and this is a Phase 3 Trial. I'm hoping to get some extra quality of life time with my family.

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