Difficult new results

Posted by donnademps @donnademps, 8 hours ago

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.

@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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