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Brain Mets


Olivia

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As some of you know, my dads MRI revealed 5 Mets in his brain. Weeks before, we received great news that his chest/abdomen scan was clear of any evidence of disease. Tomorrow is his last day of WBRT...it’s been an interesting road over these last few weeks. Upon starting treatment, he was just so confused...what day of the week it was, what meds he needed to take/when, and overall confusion. After a handful of days of radiation treatments and his steroids, he was pretty much back to normal. Short term memory was SOO much better and he was just back to himself again. Well this weekend, he started getting confused again and just seems like a shell of himself. He’s frustrated because he recognizes his confusion and knows when he’s not making sense, but can’t correct it. I spoke with  his rad onc’s nurse and she assured me that this is normal. For him to have those super good, clear days last week was almost abnormal in her opinion. Of course I was worried that this meant radiation isn’t working, which she debunked right away. Can anyone provide any insight on their experience with brain Mets and how you got through the bad days? Can I expect this back and forth progress for a while? 

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Olivia,

I wish I could provide first hand experience with brain mets. The best I can offer is my daughter's meningioma brain tumor that required two surgeries and a course of Image Guided Radiation Therapy (IGRT) to treat. Her radiation blasted the tumor, and she did have vision problems for a couple months. But now her vision is restored and she is back to her "crazy" normal-self! Radiation to the brain can be effective but can cause side effects like my daughter had and your dad is experiencing. 

How does one get through the bad days of lung cancer treatment? That is a great question. Our disease is deadly and persistent; to conquer it, one must be more persistent. Treatment is like a marathon race during a hurricane but running into the wind with every step. I think you should expect the "back and forth" behaviors for a while. I think you should hope WBRT finally clears his cancer so he can escape the mayhem of treatment.

My life after treatment was vastly different in terms of things I was capable of doing. I had chronic pain, reduced pulmonary capability, muscle cramps and other associated problems. I had to make a new "normal" life and you might anticipate helping your dad create his new normal life.

Stay the course.

Tom

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Olivia,

  I had one brain tumor at the onset of my diagnosis, it's what actually lead to my diagnosis.  I never had any signs of symptoms of Lung Cancer, but then had sudden neuro changes, which at first seemed like a severe type of Vertigo?  I had an urgent head CT Scan and they found the brain tumor and then another week in the hospital and many more tests I learned I had Stage IV NSCLC, a Brain met and Pulmonary Embolism.

   I was immediatley put on Dexamethasone (Steroid) and Keppra (Anti Seizure med), both of which really helped.  I did actually lose my speech and use of my right arm and hand for a time, due to severe edema.  Once the Dex alleviated that, I regained full function.  I later moved onto SRS (Stereotactic Radiation) which was a one time high dose and it was 100% successful.  I had no further side effects and no problems with the procedure.  I stayed on Dex and Keppra for many months (I think about six) but it's hard to remember exactly now and I've been met free every since (over 5 years now).

 I do know the WBRT can be a bit more challenging, but I also know others who've been through it and are doing well.  I do think it takes longer to rebound from the treatment and regain function, but I know it does happen and I do WISH the very best for your Dad and hope he'll soon be on the road to healing and moving forward in treating the lung cancer.  Keep on sharing his experience with his team and they'll do whatever they can to get him though it.  If they told you this is very common, then I think that's positive news.    None of this is easy, it's quite an overwhelming thing to go through.   I was so shocked with my diagnosis and it was really difficult in the early days when I could not speak to my sons, especially since one live across the country.  He came home a few weeks later and actually took me to my SRS treatment and was a huge inspiration.  He is also very upbeat and determined and gave me hope and courage.    I'm sure you are doing the same for your Dad.

 Fondly,

  Lisa

 

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