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Difficult new results: brain metastasis and gammaknife treatment
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.
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@donnademps I'm sorry to hear you have more progression and need additional treatments. I appreciate you sharing your story because for me the unknowns are the hardest part, too. having a plan for what you are going to do always feels better than the helplessness of just knowing something is wrong. having to give up your driver's license is a big loss. hugs!
since you have such a long drive, does your cancer center have any subsidized lodging available? that's something my cancer center offers. it's a like a family style hotel and it has shuttle service to the center, which is also really helpful. please keep us updated on how you're doing. 🙏🏻❤️
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5 ReactionsHello@donnademps,
I’m so very sorry to hear your new results, you are experiencing so very much, I can only imagine the range of emotions you and your husband have been experiencing.
Good for you for feeling more positive as well now, that is not always so easy to do….. And you are !
It sounds like you have an excellent care team, that makes such a huge difference.
Sorry about your license ! Ugh !
All the best next week as you begin radiation, let us know how you are doing please.
Sending positive thoughts and huge hugs 🤗 Daisy
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4 ReactionsI can tell from reading your post that you're a strong and courageous person. Your description of the new Gammaknife radiation is interesting. At a cancer conference I was told that every year we have amazing new treatments being discovered. You'll be in my thoughts and prayers.
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1 ReactionOh @donnademps, we were all hoping for better news for you. It sounds like you have a great team, and I'm glad they are moving forward with treatments so quickly. Many people mention having gamma knife, and it seems to be well tolerated, but it's not something that I have personal experience with. Sorry about the driving too. Hopefully you are able to work that out with your husband or other friends. My husband hovers when I shop, so if we go somewhere together I try to find stores nearby that he can go to, and we meet up when I'm done. 🙂
Thinking of you and sending hugs. How will they be treating the non-brain lesions? Are you no longer eligible for the trial?
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1 Reaction@lls8000
Many thanks Lisa. I am happy to share how I tolerate this new gammaknife treatment. We have a large B&B booked for Thanksgiving (early October,) to accomodate everyone in my direct family. I love watching my 2 adult kids and their children. Even if I'm not at my best, I'm hoping I can still enjoy being together. I joked with my adult kids and told them if I couldn't come, they HAD to go bc we likely will not get our $ back. lol
I have also used the same technique with my hubby regarding shopping. Today I told myself it was time for me to go pick out new glasses. Then I remembered...dope....have to check with hubby first.
Thanks for the hugs, will keep you posted.
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5 Reactions@donnademps, you might appreciate the posts in this related discussion:
- Have you had Gamma knife surgery? What can I expect?https://connect.mayoclinic.org/discussion/gamma-knife-surgery-have-you-had-it/
Have you started gamma knife radiosurgery now? How are you doing?
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1 ReactionI just went through something similar. In 2022 I was diagnosed with stage 1 adenocarcinoma in my right middle lobe, which they took out successfully. Since it was stage 1 I did need chemo or radiation. All my follow up scans of my lungs have been clear for the last four years, so I thought I was clear. About two years ago I started experiencing issues with my left foot. It felt like I had a compression sock around it affecting my walking stride . At first I thought it may just be neuropathy but after seeing several doctors and having multiple scans it was determined that my lung adenocarcinoma had spread to my brain causing my motor issues. This week, I went into University of Miami and had a radiation therapy called LINAC, which is very similar to the gamma knife radiation, but it only took 15 minutes versus almost two hours with the gamma radiation and it has the same effectiveness. They create a personalized mask that they use for the procedure. They said that because my lesion was not that big that I only need one session. I will attach a photo of it, it looks scary but it was no problem, didn’t feel anything during the process. So now I’m hopefully on the road to recovery and will start physical therapy next week to try to get my motor issues back to normal. So fingers crossed that you will soon be on your way as well, keep living and enjoying your life.
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11 Reactions@colleenyoung
Thanks for this link.
Just looking at it now. I'll share about more about the Gamma knife experience in a couple of days.
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2 Reactions@panda2ac thank you for sharing your experience. I hadn't heard of LINAC, but I'm glad it was an option for you and that you only needed 1 session. best of luck with your physical therapy! ❤️
@mamajite Yes, the LINAC procedure is very similar to the gamma knife but a lot better because it has it's own frame so they don't need to put the frame on your head and it is a lot faster and just as efficient. If anyone is offered the gamma knife option you can ask about this one and see if it is an available option for your area.
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3 Reactions