Steroid taper continues

Aside from often-daily bouts with headache that require rest and pain meds, Susan continues to do remarkably well on her lowest dose of Decadron in at least the last 18 months. Headache is common as her body adjusts to less of the oral steroid and needs to jump-start its own natural production. But the fact that she’s been free from tumor or other problems for months means we can pursue this effort as far as possible. It also gives her a chance to shed the influence of side effects like bone loss and diabetes. We’ve learned to be ready for setbacks, but become more hopeful with the progress as time goes on. She’ll be back at UCLA before the new year for her next MRI and tumor update – but symptom-wise, things look good.
 

Today’s Brain Tumor News Blast from the Musella Foundation highlights research co-authored by Doctors Leia Nghiemphu and Linda Liau, Susan's UCLA neuro-oncologist and neurosurgeon. Their team’s 2006-2008 clinical trial study of 70 new GBM patients showed improved progression-free survival when treated with a regimen of Avastin (Bevacizumab) and Temodar (Temozolomide) following radiation therapy. Susan was not part of the study, but she's had each of these treatments during her course of treatment at UCLA.
 

Get the story: Journal of Oncology, Dec 2010 

While the clinical trial did not advance overall survival, it nearly doubled progression-free survival from 7-8 months to nearly 14 months. Such gains may seem small – but to me the study reveals the intensity of the battle as specialists try to find better ways to help GBM patients survive this devastating disease. That the study’s overall survival rate was 14 to 21 months makes us all the more grateful for Susan’s survival and good condition at 42 months. We’re also proud of the work her doctors are doing and glad she’s being helped by the best of the best.

Good news for Hank and for Susan

Cris Zaveleta posted on CarePages:

Yes, we are home. AGAIN. and I plan on keeping it that way! Hank is doing well and is continuing to rest. He is having a little trouble with his right leg/foot and walking isn't easy, we have no idea what that is about, but we will figure it out and get him moving again.
I know I've said this a million times, but I just want to THANK everyone for your continued support, love, prayers, visits and yummy food. We feel so Blessed.
Hank will start the dendretic cell vaccine (clinical trial) in two weeks, he will get an injection every other week for a total of 3 injections. He will also start an I.V. medication-Avastin, in 4 weeks. I’m not sure how long they will give that one. He will continue to get MRI's every 6 weeks to keep an eye on things. That's the plan for now. I will keep you posted.  XOXO - Cris

Susan and I were able to visit and pray with Hank and Cris last week after Susan’s oncology visit, and were greatly encouraged to see how well he’s doing and how beautifully they trust God and reflect his peace. Strangely, it’s almost easier to go through an ordeal like GBM yourself than see others suffer with it. That was true for me concerning Hank and Cris until I realized we share the same confidence and hope in God. Ultimately, I know Susan and I are okay, that’s why we have peace – now I know Hank and Cris are okay, too.
 
I love Hank’s heart for the Lord and how he so freely voices his desire that people know Jesus. He shows neither pretense nor embarrassment in sharing his faith. He’s just a guy for whom the important things in life have been brought into focus while other things have been stripped away. He knows whose he is and where he’s going. As I pray for his healing, I’m also praying for the desires of his heart and thank you for doing the same.
 

Meanwhile, we’re encouraged once again with Susan’s latest MRI that shows her tumor is stable. I’d been concerned that more headaches recently were a sign her tumor was growing, but since she wasn’t worsening in other ways, I was cautiously optimistic. I figured we were dealing with her latest effort to get off steroids. The doctor agreed.
 
But the next day she told me the radiologist who viewed her MRI noticed signs of thickening of the lining outside Susan’s brain (the dura), a condition called intracranial hypotension. It usually occurs if there’s a leakage of fluid from the spinal cord from a spinal tap or an accidental puncture, and could have happened when she recently had some electrodes removed from her lower back. If so, perhaps the leak was a small one since she didn’t have the terrible pain that comes with rising to sit or stand. In any case, the condition usually resolves on its own. Susan has been feeling well lately, so we’re okay with not having a complete understanding of what happened.
 
We’re glad to have Susan well and free from tumor progression so we can concentrate on weaning off steroids again and hopefully her gaining strength and function. Her gains are small and incremental while memory and vision are still difficulties for her. Still, we’re aware that God is keeping us in his care as we seek him for healing, strength, and restoration. I’m reminded of God’s word that says, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12:9) We continue to trust him in the mystery.

Steroid-induced diabetes

After three years on Decadron, the steroid commonly used to prevent brain swelling, Susan has been diagnosed with diabetes.  I think this completes her collection of Decadron side effects, following weight gain, moon face, muscle loss, swelling of extremities, and bone disease.  As much as she’s needed it to prevent too much pressure in her brain, she’s needed to be rid of it for obvious reasons. 
 

We’ve tried to taper her from it completely at least half a dozen times only to have a complication occur that requires a full dose again.  She was completely Decadron-free for only about two weeks a couple of years ago before she had some tumor progression and needed 4mg daily again.  She’s had as much as 16mg daily during major events like a hemorrhage, but has spent most of the time in the touchy sub-2mg zone.  Quitting cold-turkey could be deadly since the body’s own steroid production ceases when the manufactured stuff arrives.  A slow taper allows natural chemicals to reappear, but requires weeks at a time at each level.  Susan was down to 0.5mg every other day when the stress of her kidney stone erased several months of progress and bumped her back to 2mg daily.
 

A routine blood test on 6/23 to check her platelet counts revealed her glucose was soaring at 405 mg/dl, about four to five times the normal level of 70-110.  The next day a nurse practitioner at UCLA suggested Susan see a doctor immediately out of concern for ketoacidosis, which can occur above a glucose level of 240 when the body’s inability to absorb sugars leads to the release of ketones that become poisonous.  We went to urgent care for more blood tests – Susan’s glucose had jumped to 435.  I learned the symptoms I’d begun observing unawares were classic ones:  dehydration, cotton mouth, frequent urination, and fatigue.  She’d had to stop five times to catch her breath as we walked to the lab parking lot the day before.  Thankfully, she responded to an insulin injection at urgent care and did not need to be hospitalized. 
 

Catching this new problem on a previously scheduled blood test was divine intervention, since we were preparing for Susan to travel up north for a week with her parents and our family.  The thought of her getting mysteriously and progressively ill while removed from her doctors and me by an eight-hour drive is not a pretty one.  Thanks to God, we caught it early.  We followed up with her primary care physician on Monday after she began an oral med called Metformin, took home a blood sugar monitor, and met yesterday with a nurse and diabetes educator.  We’re told this steroid-induced Type II diabetes may be reversible with lower doses of Decadron (again!), specialized diet, and weight loss.  We’ll do our best.