We are being visited this week by Kelly, Lechelle and Boston. Boston is a lovely and precious child and very well tempered. His adoption was finalized last Friday, November 19th. It is great to have them with us.
A common occurrence with lung and brain cancer is metastasis of the tumors to the brain. The mechanism by which primary tumors produce brain metastases is thought to be the spread from primary or secondary sites in the lung. Since the brain has no lymphatic system, all tumors metastasizing to the brain do so by spreading through the bloodstream.
Brain metastases carry an ominous prognosis regardless of primary status or treatment given. The median survival of untreated patients, or those treated with corticosteroids alone to reduce brain edema, is about one month. Whole brain radiation therapy (WBRT) is the most widely used method of treating brain metastasis, despite the fact that patients treated this way have an expected survival of only three to four months. Death from recurrent or persistent tumors occurs in about 50% of the patients.
Immediate side effects of WBRT can include memory loss, particularly verbal memory (remembering what someone said to you), extreme fatigue, temporary baldness, skin rash, inflammation of the outer ear, and hearing loss. Longer term toxicities which can occur within six months to two years after WBRT, include memory loss, confusion, lack of urinary control, and lack of coordination.
The effect of WBRT is swelling or edema of the brain. Dexamethasone (Decadron) is a steroid that is given to reduce the swelling. I take it in pill form twice a day. It starts working within several hours.
Steroids may be continued for weeks or even longer. However, the longer they are used, the worse the side effects become. Side effects from steroids can be very serious, but the brain swelling they counteract can be even more serious and possibly life-threatening. Common side effects from long-term use include weight gain, muscle weakness (myopathy), insomnia, moodiness, acne, osteoporosis, hypertension, swelling of the face, cataracts, osteonecrosis (death of bone cells), impaired wound healing, muscle weakness, pneumonia, and diabetes.
Given these side effects it makes sense to quit taking the steroid as soon as possible. So we decreased my dosage from 4 mg to 2 mg for a few days, then to a half a pill and finally to none. However, over this same time period I experienced extreme fatigue. It is as if I had hit a wall. I could do nothing more than lie in bed or sit on the couch. I would think about getting up but couldn’t muster the energy to go beyond that. The condition was severe.
On Tuesday we returned to the radiation Doctor to discuss this new development. While reviewing my medication list he discovered that I had ceased taking the steroid and suggested that I immediately return to my initial schedule with plans on weaning off the drug by Christmas. I am now back on the medication and doing better.
I again have the usual side effects of insomnia (I can sleep only 4 hours at a time), some weight gain, muscle weakness and impaired wound healing. My left ear has hearing loss which I believe is from the hardening of ear wax which can be treated without pills. But having cancer is a constant trade-off between medications and symptoms.
I suppose as time progresses we will learn better how to better manage the medications but this is not an exact science and much more of an art. I am just grateful that I have a loving caregiver with my best interests at heart.
2 comments:
You do. YOu have the best woman in the world.
I love the picture of you and Boston. Isn't he an adorable kid?
Keep up the good work trying to balance things right, it's no small task I'm sure. Stay strong. Can't wait to see you soon.
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