Satomi's Cancer Blog

Technically, it is now Sunday morning.  Kandi and Jill are fever-free but remain a bit sniffly.  They are playing around like normal and overall happy kids.

I just finished Day-4 of my 5-Day Tamiflu regimen.  I actually feel pretty good with only a slight cough and fever (100.5°F~101°F).

Our isolation of Satomi seems to have worked but all the drugs she’s taking for her Kidney stones are playing havoc with her system.  She’s dizzier and nauseas.  She’s stopping the drugs for a couple of days to give her system a rest.

I just received a phone call from Dr. David Chan, an Oncologist from Cancer Care Associates in Torrance.  He was highly recommended by several of our friends with past cancer experience and some other doctors.  I had sent him a complete copy of Satomi’s medical record and a DVD with her scans.

The doctor asked a few questions and confirmed that Satomi’s care was fine.  He didn’t think an office visit was necessary especially since he would have provided the same basic treament plan and that her recent spinal scan was negative. 

I also mentioned that we had just met with Dr. Chap.  Apparently, they are colleagues and he was quite confident in her abilities and opinion. 

He ded recommend another UCLA Doctor to review Satomi’s brain tumor progress.  

It was a fairly short but positive conversation.

Satomi and I drove up to Santa Monica to meet with another well-regarded Oncologist, Dr. Linnea Chap at Premier Oncology.  We had originally intended to seek future guidance on treatment of Satomi’s spine.  Now that her spine is “not cancerous”, we changed our direction and asked for an overall review of our treatment plan and to discuss the most recent spine scans.

Dr. Chap is quite impressive.  Besides being a mother of 4, she is quite accomplished.  Here is an excerpt from their website:

“Linnea Chap, MD is a highly respected specialist in cancers affecting women.  She received her medical degree from the University of Chicago, completed her residency in internal medicine at Northwestern Memorial Hospital and her fellowship in both Hematology and Medical Oncology at UCLA.  She joined the faculty at UCLA in 1995 serving most recently as Associate Professor of Medicine and co-director of the UCLA/Revlon Multidisciplinary Breast Center, overseeing the Multidisciplinary Breast Clinic. Dr. Chap has multiple publications to her credit and has led several breast and ovarian cancer treatment protocols, including the pioneering use of novel biologic agents such as Herceptin and Avastin…”

What I found most impressive was that, as a researcher, she could quote many statistics which appealed to the engineer in me.  She was also familiar with several of the studies that I had previously read so her statistics were basically the same as mine.  She inspired a lot of confidence.

We gave her a detailed medical history and a long story short, she supported our past care.  It was encouraging to know that Satomi had received “state-of-the-art” treatment.

Her opinion of the recent spinal scans was also enlightening.  Satomi’s had a history of osteopenia since age 35 (very young for low bone denisty).  As part of her treatment she used Zolodex (drug to supress estrogen production) which will directly effect bone density.  Tie these factors into her various forms of chemotherapy (almost all of which also supress estrogen production), the likelihood of serious osteopenia (and the subsequent compressions fractures in her spine) at age 42 is quite possible. 

She will have her Radiologists re-review the images but she expects that they will be again found as non-cancerous.

Dr. Chap recommended Zometa to be incorporated into Satomi’s future treatments to counter the osteopenia.  This recommendation was quite encouraging because Zometa was already recommended to us by our primary Oncologist a few weeks ago.

This information was well worth the long trek to Santa Monica.

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[Update 11/30/09] 

We just received a call from Dr. Chap.  The Radiologists confirmed her opinion regarding Satomi’s spinal Osteopenia.  They do NOT consider the compression fractures to be an indication of cancer.

So who out there can tell me what the light red line means?  I clouded it just in case you think it’s a figment of my imagination.  Click on the photo for an enlargement if you still don’t believe me.

Last night Jillian had a drippy nose and a 103°F temperature pre-Motrin.  For all those non-Parents out there, Motrin is the medicine of choice to reduce fever.  After Motrin, Jillian was a sleeping 99°F.  It works wonders and I love it.  Kandice was just a bit drippy.  So far, no big deal.

This morning I decided to take Jillian to the Pediatrician since she was congested and obviously miserable.  Kandice was mostly asymptomatic but a bit drippy so I took her too.  I hit Jillian with a dose of more Motrin before we jumped in the van.  By the time we got to the office, Jillian was her normal playful self and again 99°F.  The doctor looked her over and thought it as minor as I did.  As a formality, she decided to perform one extra test.  What a shocker…

Jillian has the H1N1 virus (“Swine Flu”).  The above photo is of the test strip used to confirm it.

The doctor was also shocked since Jillian’s symptoms were relatively minor.  She recommended that we treat both girls since Kandi is likely only a few days behind in the cycle. 

Luckily we found a pharmacy that had Tamiflu in stock but only in the solid tablet form.  They had to grind it up and put it in a liquid suspension for the kids.  As soon as we got home, they started treatment.

[Let me digress for a moment to complain about our supposedly wonderful insurance.  They cover liquid Tamiflu but with the ongoing flu epidemic, it’s impossible to find.  Strangely, they don’t cover the tablet Tamiflu.  I’m not a conspiracy theorist but what the hell?  In the end it cost me over $200.  The pharmacist unsuccessfully called them to appeal.  After all of the tens-of-thousands of dollars of cancer treatment, it sure seems petty to limit Tamiflu.  I’m going to appeal it again.  I guess I should be happy that we actually have some Tamiflu in the first place.]

Surprisingly, the treatment is only 5-days.  Their prognosis is excellent but our concern is Satomi-She cannot catch H1N1 while she is immuno-surpressed.  Doing so would likely put her in the hospital.  We called our Oncologist but she was not comfortable with a prescription as she was not familiar with anti-virus drugs.  In the midst of all the many doctors, Satomi doesn’t have a primary care physician for something like this.

My solution to this problem is to isolate Satomi in her room for the next 5-days and everyone wearing surgical masks.  Her exposure to the kids are limited to a goodnight hug and kiss so I am hopeful that wasn’t enough to infect her.  She feels (relatively) fine so we’ll see.  We’re monitoring her temperature.

It looks like we can’t host Thanksgiving Dinner here as we had originally planned.  The delay sucks-with all the BS going on in our life, I was looking forward to giving thanks and spending time with friends and family.  This is just another thing that get’s screwed up by bad health.

I spoke to my doctor and realized that I can also get infected.  Before knowing that Jillian was H1N1 positive, I’m sure that I was exposed during my care for her-getting sneezed on, wiping her nose, giver her medicine, etc.  If I get a fever, I’m screwed.  The incubation period is less than a week so I may get sick in the middle of the Holiday weekend.  The same goes for Satomi but in her case, it’ll be another trip to the ER.

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[Update 12/3/09] 

I was doing some research on these BinaxNOW test kits.  The test’s manufacturer, Inverness Medical, states clearly on their website that this test DOES NOT DISTINGUISH BETWEEN COMMON INFLUENZA-A AND THE H1N1 STRAIN OF INFLUENZA-A. 

There was also an interesting article here:  http://www.cdc.gov/eid/content/15/10/1662.htm.  According to the study, this test is not very accurate as it only detected ~11% of H1N1 of known infected samples.  In other words, you can get a negative test but still be infected.  

With this new information, I really don’t know if all of us had H1N1 or the common Influenza-A.  When you consider the short 48-hour window for Tamiflu treatment, the time required for laboratory genetic testing, and the extent of the H1N1 epidemic, a positive BinaxNOW test, with all of its flaws and limitations, is still reason enough to treat it as H1N1.]