April 06, 2004

ChemoBrain/Cognitive Dysfunction

In today's Wall Street Journal's Health Journal, Tara Parker-Pope discuss one of my continual issues, ChemoBrain.

Research from UCLA indicates marked differences in the brains of breast-cancer patients who had undergone chemotherapy. As noted in the article, studies of "breast-cancer patients show that nearly two-thirds of women treated with chemo develop some level of cognitive problems, though most recover on their own in weeks or months after treatment stops."

The problems relate to "focus, fast thinking, organization skills and an inability to multitask," indicated Eric Winer of Dana-Faber Cancer Institute.

In a study at M.D. Anderson, about 60% of patients showed significant cognitive decline after chemotherapy. This study gave patients neuropsychological assessments before and after chemo.

Although there has been a fair amount of research done on ChemoBrain (see Other Resources), it seems that finally the issue is now become discussed as a side-effect with cancer patients before undergoing chemotherapy. In addition, there is research into how to help with a very frustrating side-effect.

Although the traditional side-effects of chemotherapy are a pain, ChemoBrain for me frequently leads to slight depression and anxiety. I think in part, this is due to that as I start feeling better after chemo, ChemoBrain becomes more apparent, especially as I try to concentrate or attempt to do more complex thinking.

I have found that reading, writing and relaxation due seem to help with ChemoBrain. With research underway with the use of both Procit and Ritalin, I'd prefer to continue to use non-drug therapy if possible. Adding medication, unless it proves to be highly-effective, is one of the last things I'd like to due.

The exciting news is that ChemoBrain has become a side-effect as important as nausea!

Other Resources:

Susan Love, MD - FAQ - ChemoBrain
Journal of Clinical Oncology - Cognitive Function in Breast Cancer Patients Receiving Adjuvant Chemotherapy
WebMD - Memory, Concentration Problems May Be Related to Chemotherapy
PinkRibbon.com - ChemoBrain , good exercises to try.
MyHealthSense.com - ChemoBrain Leaves Patients at a Loss

09:01 AM in Chemo Chronicles | Permalink | Comments (56) | TrackBack

April 01, 2004

Shared Care Plan Idea

This is a very exciting program. "Shared Care Plan" is clearly a major step forward in improving the communication between everyone involved in a chronic care situation.

The "Patient Powered" program in Whatcom County, Washington seems to be on the "cutting-edge" of empowerment for both patient, caregivers, family members and healthcare professionals.

Too often, we think empowerment is patient-oriented, I think this misses the point. The entire healthcare team needs to be empowered. Healthcare professionals need to be empowered to share more information and not to be threatened by patients who believe in assisting in managing their disease.

09:06 AM in Chemo Chronicles | Permalink | Comments (0) | TrackBack

February 05, 2004

Tools of the Trade ...

Chemo Chronicles Article

As I looked over my notes, I came across a comment to update "technology for the chronically ill and cancer patients." In a previous cancer website <http://cancer.stonecottage.com/originalv1.html>, I had discussed some of the computer tools I use for keeping track of critical health information, which lead to an article in Health Data Management . It seems time to update this article for changes in technology and how I'm keeping critical health information.

I currently use a Palm Tungsten T2 <http://www.palmone.com/us/products/handhelds/tungsten-t2/> for hand-held computing needs. When at home, I use Apple G4 PowerBooks, a 12-inch <http://www.apple.com/powerbook/index12.html> and a 15-inch <http://www.apple.com/powerbook/index15.html>. On the Palm, I have installed two critical applications, PatientKeeper <http://www.patientkeeper.com/products_personal.html> and Documents-to-Go <http://www.dataviz.com/> (see reviews below) which are at the heart of the essential tracking of health information.

There are two aspects of health information tracking that I see as critical. First, the essential data which includes test results, medication lists and upcoming appointments. Secondly, the keeping of radiological results, surgical reports, appointment and prescription receipts.

Essential Portable Data

For a chronically ill patient, including cancer patients, having immediate access to essential test results is very important. I maintain on my Palm a three year history of blood tests, tumor markers and other lab tests. In addition, I have a current list of medications in our "home-pharmacy" as well as my daily medications. Ideally, a single application for be great, but, that's not the case, so here's my process.

I use PatientKeeper to maintain "clinical" type of information, blood work results and medications being taken. For maintaining a list of all medications in our home-pharmacy, I use an Excel spreadsheet which is handled on my Palm via Documents-to-Go. For upcoming appointments, I use Life Balance for this.

To maintain the secondary type of information, I scan the original documents and convert them to Adobe Acrobat and store them on the PowerBooks. This information isn't always necessary to have when visiting the doctor, but it great to have for reference and for tax-records. When I have needed to go to the hospital, I have burned a CD of all the documents -- just in case we needed to reference a radiological report.

Software Review

PatientKeeper

I started using PatientKeeper when it was version 1.0 and had been using it through version 2.33. I recently upgraded to version 3.11 and found the upgrade to be a major improvement in both interface design, reporting and functionality. Although PatientKeeper is designed for doctors, it can be easily adapted to patient use.

The first screen is the "medication" screen, very handy for recalling exactly what pills and dosage are being taken. As can be seen along the bottom, the interface is very clean and simply.

Screen 2 shows the blood panel results. This is the feature I use most in PatientKeeper. There have been many times I was able to find results faster than the doctor flipping through my medical file. In addition, the information can be viewed in a variety of ways: individual panel results; tabled; quick view.





Individual Results

Tabled View
Quick View

PatientKeeper also has an excellent graphing features, as seen in this screen.

Conclusion
I can recommend PatientKeeper without any hesitation. For the price of $39, knowing you always have all the critical information at your fingertips is a small price to pay for that security. If you travel, having this information available is of critical importance. In addition, having all your history available can make your meetings with your doctor more valuable -- less time searching for the numbers -- more time talking about treatment and progress. PatientKeeper ease of use also makes it easy for caregivers to have access when the patient isn't able -- very important and reassuring to all concerned.

PatientKeeper is simply a must-have for the chronically ill patients and caregiver.

Documents-to-Go

Document-to-Go is a very powerful suite of applications designed to share Microsoft Office documents with a Palm device. I keep my home pharmacy in an Excel spreadsheet, which is then converted by Documents-to-Go and place on my Palm. I can updated the spreadsheet on the Palm, which is automatically updated to my PowerBook at the next HotSync.

This is a very handy reference, especially with the cost of prescriptions today. The real power of Documents-to-Go is the ability to make any Office document portable and available anywhere you have your Palm.

10:28 AM in Chemo Chronicles | Permalink | Comments (0) | TrackBack

February 04, 2004

State by State Health Facts ...

The Kaiser Family Foundation has an excellent state-by-state fact sheet. A resource worth bookmarking for future reference.

08:34 AM in Chemo Chronicles | Permalink

January 29, 2004

RX Tools ...

On Chemo Chronicles...

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WSJ: New Consumer Access to Quality Data

The Kaiser Network has a good summary of Laura Landro's Latest Informed Patient article on new web tools for improving consumer access to quality data about health plans. The actual WSJ site requires a password, but this article is worth reading.

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LA Times - "Democrats Can't Shake the Pack on Health Care

A very good article in today's LA Times on the Democrats health care issue positions. Worth a read.

09:04 PM in Chemo Chronicles | Permalink | Comments (0) | TrackBack

January 23, 2004

Cycle 38 - Day 1

Started Cycle 38 today with continuing good results. All the basic bloods counts are holding well and I'm feeling stronger each day.

We continue to take life one moment at a time and feel great about our doctors, healthcare providers and our support family.

Written while listening to This Woman's Work from the album MTV Unplugged: Maxwell by Maxwell

Posted with ecto

12:40 AM in Chemo Chronicles | Permalink

January 08, 2004

Seeking Writers for Cancer Site ...

Chemo Chronicles is seeking writers to share their cancer experience with others. Writers can be cancer patients, survivors, caregivers and medical professionals.

If you are interested, please drop us an e-mail at hermitage-chemo0001@mailblocks.comĀ  for more information.

Chemo Chronicles is operated by Craig Miles and Solace Projects.

We welcome all to participate and create a online cancer community.

09:46 PM in Chemo Chronicles | Permalink | Comments (1) | TrackBack

Cycle 36 - Day 1

Started Cycle 36 using a new drug, Adriamycin, which will be administered once a week for 8-weeks. I will be able to spend the week of February 9th-16th, when I will back on San Juan.

The new drug is administrated over 15 minutes -- clearly the quickest infusion I've experienced.

I have added more details on the Daily Cancer Journal (user/password required -- drop-me an e-mail and I'll gladly provide access.

Posted with ecto.

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