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.

Yet another hospitalization

Thu 11/01/07
Susan was noticeably more fatigued today after her initial high-dose temodar chemotherapy. We're thankful she's had no nausea or vomiting, and she's doing well overall. We anticipate starting her new home-based, multidisciplinary therapies next week once some remaining details are arranged.

Mon 11/05/07
Following approval by our insurance company, we had an initial visit by a case manager from Gentiva / Rehab Without Walls, a home & community based team of physical, occupational and speech therapists, along with a social worker, who will design a course of treatment for Susan based on her goals. We'll start the evaluation appointments this week.

Tue 11/06/07
Susan has had a tough couple of days following her 5-day cycle of higher-dose chemotherapy. She's been more fatigued and nauseous with some vomiting and a bit more confusion. She's also had more headache than usual; I believe due to her transition from one steroid (decadron) to another (prednisone) in order to help her taper off of the decadron that she's been on since June (a really long time). I'm in touch with her oncologist to monitor her symptoms and hope she'll feel better within a few days.
I'll be seeing a surgeon next week to schedule an operation to remove my gall bladder after a long spell of battling painful attacks due to gall stones. A homeopathic remedy I tried last week allowed me to pass a large volume of stones; but also found me in the ER (again) on Sunday because of the ones that remain. I now accept the facts that the organ is inflamed and prone to infection, that I'm one of those people whose body produces stones, and that it's time to have surgery. Don't ask to see my rock collection.

We continue to be amazed at the love of God's people who continue supporting us prayerfully, physically, emotionally, and financially. Every now and then we catch a glimpse that somehow God has inspired or encouraged someone simply by their observing our situation, along with comments like "more than you know" or "bigger than you imagine." Such an idea is hard to comprehend, and is a work better left to the Lord for a lot of reasons. We are grateful for the assurance that He's working good through our circumstances and that more good is yet to come. Meanwhile, Susan and I are content to trust Him while we muddle through the day-to-day. We also pray for our friends who are afflicted with cancer during this bizarre season.

Wed 11/07/07
Susan developed a low-grade fever last night that moved progressively higher to as much as 100.9 at 3am. With tylenol, her temp was normal in the morning. She also needed vicodin for pain.
When the fever returned this afternoon, neuro-oncologist Dr Nghiemphu and I discussed the possibility of fungal meningitis emerging again. She recommended I take her to UCLA for evaluation. We arrived at ER at 9pm, where they were full. She went from a bed in the hallway to a single room over night, to an ICU by 8am.

Thu 11/08/07
When Susan's spinal tap was positive for meningitis, they began giving her IV anti-fungal meds. A CT scan also revealed enlarged ventricles or brain cavities, a condition known as hydrocephalus that occurs when the body is unable to properly drain & absorb spinal fluid. The risk is increased intracranial pressure, convulsions and brain damage if left alone; and the common treatment is surgically-placed shunts for drainage. However, the shunts can't be implanted as long as fungal infection is present. To relieve pressure in the meantime, the neurosurgery team installed a spinal catheter, sort of a continual spinal tap. They collected quite a volume of fluid under pressure at first. They will continue to drain off fluid daily, send it to the lab for analysis, and hopefully watch the infection abate.
Once again, I was faked out for a while by multi-factor symptoms – head pain from switching steroids and fatigue/nausea from chemotherapy also can be caused by meningitis. Thankfully, fever is a valuable red flag to indicate a greater problem and cause us to act before Susan's condition worsened.
I discussed a PICC line (long-term IV) for Susan with Dr Cutler of the neuro team since it looks like Susan will have a multiple-day stay with lots of need for IV meds. He agreed and ordered the line.
This was a long day as Susan got to a bed on the 7th floor neurological area by about 3:30pm. She's in a special room called NTCU, or neuro transitional care unit, where there are two nurses for four patients who need close observation with frequent vital readings – a step between ICU and a typical room on the neuro ward.
I had another fascinating look at UCLA's ER, a level-one trauma center that is surprisingly small for its significance (and ready for upgrade when the new hospital opens across Westwood Blvd). I observed the interactions of attending physicians, interns, nurses and techs from slower periods to the choreographed ramp-up for an incoming trauma. Two patients came in after a 40 mph pickup vs cement truck crash in Inglewood. After counting down the ETA minutes, they were ready with their 8-10 member team when the ambulance arrived. I was impressed.