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7/10/2010
Two days ago my follow up chest and abdominal CT scans were again negative, and the albumin (protein) level is back to normal!
However, my cortisol level was undetectable, suggesting that I have adrenal insufficiency. People with adrenal insufficiency suffer from a malfunction of the adrenal glands, a condition in which the glands stop producing hormones that are important for certain bodily functions. Symptoms of the condition are non-specific but include fatigue, weight loss, muscle weakness, and dizziness when standing up from a sitting or lying position (due to a drop in blood pressure), all symptoms I have been experiencing now for several months.
There are two general types of adrenal insufficiency: primary (Addison's disease) and secondary. For those of you who enjoy historical trivia, the late president Jack Kennedy was famous for his perennial dark tan. Although there was substantial secrecy surrounding his health during his years as president, many historians believed his bronzed skin was due to Addison’s disease.
I will be seeing a specialist (an endocrinologist) and if the diagnosis is confirmed, treatment typically involves replacing the hormones that the adrenal glands are not making. In my case the condition is most likely secondary to long-term steroid use and less likely, radiation damage to the pituitary gland.
I also had a consultation with a physical therapist last week, and I have begun a program of prescribed exercises and use of a stationary bike.
6/30/2010
My bi-monthly MRI (magnetic resonance imaging) of the head and base of the skull last Thursday showed no visible evidence of cancer. Blood tests were also negative except for a low albumin level, indicating that I am not getting enough protein nutrition. I have significant weakness and loss of muscle mass, especially in the lower extremities; this is presumably due to chronic steroid therapy (dexamethasone) over the past 4 months. The doctor is now tapering me off steroids, and has referred me to the Physical Therapy department. I will also get a cortisol test to make sure my adrenal glands are functioning properly.
6/22/2010
I returned a week ago from a 10-day visiting professorship to China - Beijing, Shanghai, then culminating in Suzhou, Jiangsu province for the 10th International Workshop and Symposium on Therapeutic Endoscopy and Gastroenterology, attended by 3000 Chinese specialists. Silk was discovered in China around 2640 BC. At first, elegant silk embroideries were a carefully guarded secret reserved for emperors and noble families. Later, when the Grand Canal opened trading routes towards the north, Suzhou secured its place as China’s silk capital.
This was my longest professional travel commitment since I was diagnosed with Stage 4 lung cancer 28 months ago. The big bonus for me was having my oldest Joshua join me on our first Father-and-Son overseas trip! Although my itinerary was very hectic (we checked-in and out of hotels 6 times in 10 days), we managed to visit a few highlights: a couple of hours at a secluded section of the Great Wall in Beijing, a half-day at Expo 2010 Shanghai (the China Pavilion was incredible!), Shanghai Museum of Chinese Art, Zhujiajiao Water Town (“Venice of Shanghai”), and the Huqui Pagoda (Tiger Hill) in Suzhou (christened by O.G. Ingles as the “Leaning Tower of China” since it predates the Tower of Pisa by more than 200 years).
I have completed my 5th cycle of chemotherapy, which began on March 16. The drugs are given intravenously every 3 weeks for a total of 6 cycles, so I have just one more to go! During the 4th cycle of chemo I experienced an anaphylactic (allergic) reaction to the drug carboplatin (itching, sneezing, hot flush, shortness of breath, and elevated blood pressure). So now I am just receiving two drugs: Avastin and Alimta. With no visible evidence of tumor in my body to start with, there is no immediate clinical endpoint to measure upon completion of this treatment.
I am gradually tapering off the steroids (dexamethasone) which has side effects of agitation and sleep disturbance. The major daily adjustments for me in the past 4 months have been due to loss of taste (most important to me!) , dry mouth, loss of hearing, partial left facial paralysis, and some loss of balance when walking (my SIMMS wading staff for fly-fishing on Colorado rivers came in handy during my China trip!). I have yet to regain the 25 lbs I lost at the beginning of this treatment.
4/24/2010
This health update is long past due. Many of you have expressed your concern for my health via Guest Book entries and personal emails. I want you to know that I am very grateful for your love and prayers.
The past 7 weeks have been characterized by a whirl wind of treatment milestones and side effects, an unexpected visit to the Emergency Department (head ache, neck pain, nausea and vomiting, dehydration and dizziness over 5 days), and believe or not – a trip to Paris in March accompanied by Alice, and then a family trip to California over Spring Break (where we had a memorial service for my mother who went to be with the Lord in China on January 17, 2010). All this left me too exhausted to get online to do a Health Update and answer the Guest Book. At least that is my excuse, and I’m sticking to it!
I did complete the planned 10 days of radiation therapy to the base of my skull (about 50% of the standard full dose for treating visible brain tumors, which I don’t have). This was intended to kill any lurking microscopic cancer cells that that may be damaging some of my cranial nerves (mild facial paralysis, loss of taste and hearing). While on radiation therapy I lost my sense of smell (partially), and there was more deterioration in my hearing (I have about 50% remaining in my right ear and 15% in my left ear). Ironically, radiation therapy also causes cranial nerve injury (temporary or permanent). So in the end, it may be impossible to completely sort out the causes versus effects.
The most uncomfortable radiation side effects I experienced were dizziness (persisting so far) and a very painful and bleeding dime-sized ulcer (radiation burn) at the back of my throat, which is finally beginning to heal after 5-6 weeks. I also had skin burns on the side of my face (radiation beams were aimed bilaterally just in front of both ears). I was told that my side burns would likely “burn off” (no pun intended) - but since I did not have sideburns to begin with, all I got were skin burns.
Now that the skin burns have mostly healed acquaintances, colleagues and patients have begun commenting on my facial complexion, mistaking my residual skin burns for a nice Colorado ski tan: “You look like a million dollars,” they say, not realizing that most days I felt more like a “bounced check” because of fatigue and other side effects. Of course many of you know about the medical miracle of Dr. Bruce Banner (Marvel Comics), who was transformed into the Incredible Hulk (his emotional and impulsive alter ego) after an accidental exposure to gamma radiation resulting from an experiment gone awry. I’m sure the Hulk looked like “a million dollars,” whereas I dropped 20 lbs because of loss of appetite and forgetting to eat since I can’t smell or taste the food...
One positive sign is that some of my cranial nerve functions are beginning to recover, not dramatically but encouraging enough. I recently acquired a set of fancy digital hearing aids with blue tooth capabilities – which my administrative assistant has dubbed my “bionic ears”. So “Life Is On” again, as their product slogan proclaims. Nerve regeneration is a slow healing process, so it may months before I find out whether I came out ahead on this transaction. So stay tuned!
So far I have received two cycles of IV chemotherapy (3 drugs). The oncologist recently stopped the high dose oral Tarceva I was taking because I was having a hard time tolerating the combined side effects of chemo-radiation therapy. The rationale for doing chemotherapy at this time is that after radiation therapy, the “blood brain barrier” may partially open up, thus giving these IV drugs a window of opportunity to target any occult cancer cells that may be lurking in my brain.
The best news is this: the most comprehensive round of tests done recently (a spinal tap, brain and spine MRI, chest and abdominal CT scans, and blood tests) did not reveal any signs of cancer. That’s certainly an answer to prayer! One practical challenge is that the oncologist does not have a treatment endpoint to measure the success of chemotherapy, except for any further improvement in my cranial nerve functions, which may never fully recover. But from a “Mile High” perspective, this certainly beats trying to treat a known or visible tumor in my body!
3/7/2010
This past week I felt like a train wreck. I was dizzy, and a little dazed and “loopy” towards the end of the week. In retrospect, some of the symptoms I was experiencing were actually side effects of the medicines I had received to counter-act the side effects of the steroid side-effects. Got it now?
When I stopped taking the prochlorperazine (for my hiccups) and the meclizine (for my dizziness), I actually felt better overall! Sweet and peaceful sleep is a gift from God (Psalm 4:8, Proverbs 3:24), and easy to take for granted until we lose it. Despite the feeling of agitation due to high dose steroids, I am now able to get 4 to 6 hours of uninterrupted sleep at a stretch.
Another steroid side effect was severe chest pain lasting 20-30 minutes, a heartburn radiating down both arms whenever I drink, eat or bend over. The first time, it hit me like a ton of bricks I thought I was going to pass out. Certainly gave me more sympathy others who suffer from bad acid reflux.
I have now completed 5 days of the planned ten-day radiotherapy to the base of the skull - 5 more days to go! The treatments only take a few minutes to deliver. But I have cancelled my regular work schedule next week so I can just stay home and enjoy a life of leisure. Eat your heart out!
2/28/2010
This has been an eventful week. My follow up hearing test last week showed a new hearing loss on the right ear (my good ear), a decline of 35 decibels in just two weeks, mostly in the high pitch range. The loss of taste sensation is unchanged, but a recent neurologic examination has revealed a mild left facial paralysis (I can no longer wink with my left eye but now I can smirk without trying!) There is a slight worsening of my ability to do tandem walking or to stand on one foot with my eyes closed. Thankfully I do not have to do any endoscopic procedures standing on one foot with my eyes closed.
The thin slice brain MRI revealed no new lesions in my brain, and CT of the chest and abdomen also were clear. However, the constellation of new symptoms are consistent with leptomeniningeal involvement of cranial nerves 7 (facial), 8 (auditory) and 9 (taste). I am now taking the steroid Decadron (8mg twice a day) to decrease any inflammatory swelling around these cranial nerves; I am experiencing the side effects of insomnia, an agitated feeling, and hiccups.
Instead of doing another spinal tap, the plan is to initiate radiation therapy to the base of my skull where these cranial nerves exit, and the most likely site of nerve compression. The regimen consists of 15 daily doses, and treatment will begin in a day or two.
2/7/2010
After two rounds of mega-dose Tarceva (1500 mg), the results of my spinal tap came back. Although the drug level in the cerebrospinal fluid is significantly higher at 24 hours, the oncologist has concluded that a therapeutic level is unlikely to be sustained for more than a few days, until the next weekly dose is due.
So we are now trying one more variation on the same theme: double dose (300 mg), this time to be taken daily with food. Tarceva is normally taken on an empty stomach; when taken on a full stomach the drug absorption has been shown to be increased by as much as 50 to 90% (the equivalent of taking 450 mg or more). I will have another spinal tap (my third) in a week or two.
A few days ago I went to see an audiologist because of hearing loss, most noticeable in recent weeks (I could not hear clearly when using my cell phone on the left ear). Audiogram (hearing test) revealed that my left ear has sustained up to 80% sensory-neural hearing loss, progressively worse with higher pitched sounds; the right ear is relatively normal except for very high pitched sounds. It is not clear (no pun intended) if this hearing loss is a delayed side effect of recent brain radio-surgery or high dose chemotherapy. I was offered high dose steroid therapy, which I deferred because of previous experience with steroid side effects. Hearing aids are unlikely to help, so the plan is “expectant” management, which basically means do nothing except another hearing test in a few weeks for any evidence of progressive deterioration.
Two years ago today I found out I had advanced lung cancer. Despite the ongoing challenges with treatment, God has sustained me through every bump along the road. I am so very thankful for my family, my friends, and most of all - my relationship with God.
Looking back, there have been times when I (and the doctors) have not known what to do, but “when I am overwhelmed, (He) alone knows the way I should turn.” (Psalm 142:3, NLB).
There have been times when I was so sick from treatment side effects that I could not remember what it was like to feel normal for just five minutes, but I can still recall His unfailing love, mercy, compassion and faithfulness (Hosea 2:19-20); therefore I still dare to hope, and I daily draw on His mercies which are fresh every morning (Lamentations 3:21). “From the end of the earth I call to (Him) when my heart is faint; (He) lead(s) me to the rock that is higher than I.” (Psalm 61:2). “Praise the Lord; praise God our savior! For each day He carries us in His arms.” (Psalm 68:19, NLB).
Although there have been times when my medical prognosis seemed uncertain or even bleak, my future and my eternal destiny has never been in doubt (I John 5:11-13). And meanwhile, “I am confident I will see the Lord’s goodness while I am here in the land of the living.” (Psalm 27:13, NLB)
1/30/2010
This is a belated update. Thank you for your concern for my health. Last week I had a spinal tap to check the drug level in the cerebrospinal fluid (results pending). I developed a spinal headache (throbbing pain when I get out of bed, like a migraine) which lasted four days.
On the mega-dose regimen (Tarceva 1500 mg once a week), I am experiencing some new side effects including partial loss of taste sensation, a mild sore tongue, and a funny salty taste which I presume is due to the drug being secreted into the saliva. Miraculously, the side effects of severe abdominal cramping and dry, cracked skin which I suffered for nearly two years have largely subsided; this is quite remarkable, since I have had to take pain medications for nearly two years while taking only 150 mg (the usual maximum tolerable daily dose), whereas now I hardly need any at all!
1/18/2010
There were no new lesions on my brain scan last week, so this is good news. On Wednesday I will be taking the first weekly mega-dose of Tarceva (1500 mg, which is 10X the usual maximum daily dose), followed by a spinal tap 24 hours later to measure the drug level; it will take a while to get the results of this test. There is no way to predict whether I will be able to tolerate the side effects, since there is no experience at this dose level.
Two days ago, my mother passed away in Xiamen, China; she was 98 years old (99 by the Chinese way of calculating age). We are grateful to our cousin Abao and her husband for providing mom with excellent nursing care, and for our many friends and relatives who visited her in China. Mom had been completely bed-ridden since she had a stroke over a year ago; we are relieved that mom has gone home, where pain and suffering can no longer touch her. The Scriptures tell us that God created man with three dimensions: the body, the soul (our emotions, intellect and will), and the spirit. We tend to focus mostly on our physical needs and physical health (which is the biomedical model used by veterinarians), yet the body is just a shell whereas our soul and spirit are eternal. And those who know Christ have this to look forward to: “For we know that if the earthly tent which is our house is torn down, we have a building from God, a house not made with hands, eternal in the heavens… To be absent from the body is to be at home with the Lord.” (II Corinthians 5:8).
1/2/2010
I had a follow up appointment with the medical oncologist yesterday. Chest CT scan obtained recently was negative. After two weeks, we finally got the results of my spinal tap. Although the drug concentration in the blood is adequate to kill cancer cells, the level in the cerebrospinal fluid is suboptimal - about 1/3 of the desired concentration, despite being on double-dose Tarceva (300 mg per day).
So the next step is to try a single weekly dose of Tarceva 1050 mg. The hope is that a huge spike in the blood concentration of the drug may be able to overcome the blood-brain barrier, and thus achieve therapeutic concentrations in the brain. Then I will get another spinal tap in about 2 to 3 weeks. This approach is somewhat experimental.
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