Port Report

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Success 16 September 2009

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The surgically implanted power port worked well during blood sampling and IV infusion this month. Both were painless. However, contrary to what one would expect, the IV took the same length of time as before. The round trip from home and back is about seven hours.

This chemotherapy continues to have a much greater impact on Michele than the Temodar treatments earlier this year. Michele is pretty much wiped out all day on Saturdays and spends most of that day in bed. The treatment seems to take a day to kick in and kick butt.

This week’s treatment side effect was a potassium deficiency--easily corrected with five inexpensive and easy to take pills.

Michele is feeling better early in the week. On Tuesday, she was feeling well enough to attend a very enjoyable dinner meeting at the Headliner’s Club. It was the first major social event we have been to in months.

Hopefully, things will be pretty routine for the rest of the month.

　

RKS

　

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So, How is Michele Doing?

　

A State of Mind. 07 Sep 09

　

In brief, not very well lately. The past six months have been hard on us.

The current chemotherapy (Avastin and CPT-11) is having a much greater impact on Michele than the earlier treatments. The drugs for the side effects, added to the “power port” surgery last week ( 26 August ) have made Michele very tired and run down for the past two weeks. Mobility, memory and talking presented challenges this week. We expect that she will get better. She did not have chemotherapy last week, but will begin it again Thursday.

Michele’s normal routine is to be in bed by 9pm each evening and to get up sometime after 9am. She also tries to nap every afternoon from 2pm to 5pm.

Two out of three Thursdays are pretty much spent at the doctor’s office receiving infusions (IV ). We have medical appointments on the “resting” Thursdays for blood work and a in depth medical review. We also normally have a one hour appointment every Wednesday. That does not leave much time to get many other things accomplished.

Probably the best time to phone Michele is between 10am and noon any day except Thursday. An hour after wakeup because you will want to make sure that she has had time to get at least one cup of coffee. Cell phone or landline will work.

E-mails are always good--just do not expect a reply.

Michele finds cards delightful.

For you “Lunch Ladies” she occasionally does have lunch out, but having lunch at home generally works better.

For any social activity, we recommend that you send the details by e-mail, including your phone number. Phoning ahead to find out if Michele is up to the activity is prudent. She has had to cancel most of her appointments for the past few days.

For Cat Mountain visitors, about thirty minutes to an hour is Michele’s endurance limit.

Former students and staff should contact James Armstrong for a fall event being planned.

Medical Summary and Update

Summary: We are in the middle of the second round of chemotherapy, which will last through November. On or about 30 September, Michele will have her next MRI which we expect to be inconclusive. The MRI scheduled for late November will determine our future course.


Where we have been and where we are going.

06 Sep 09


On 27 February 2009, Michele had a seizure.

On 04 March, Michele was diagnosed with glioblastoma multiforme (GBM) in her brain’s left temporal lobe (above and in front of her left ear). This is the same brain cancer that Senator Kennedy had. The New York Times newspaper has published a series of articles on cancer and GBM. ( See http://www.nytimes.com/2009/08/28/health/28brain.html?_r=5&ref=health ) There is no cure and treatment is especially difficult. Survivability is measured in weeks.

On 09 March, Michele had brain surgery, which was completely successful and removed all visible traces of the cancer. However, it was known at the time that some invisible traces of the cancer remained. She underwent gamma radiation treatment and chemotherapy (Temodar / Temozolomide) treatment from March through June. After undergoing treatment all those weeks, losing her hair and being sick for months, the treatment was ineffective and the cancer was found to be growing rapidly.

On 23 July, Michele had a highly risky second surgery. Results were far above expectations. Once again, all visible signs of the cancer were removed with no apparent additional brain damage. ( M D Anderson recommended against the surgery as being too dangerous, but Kit Fox, our surgeon, said he could do it effectively and safely, and did. )

On 10 August, Michele began chemotherapy again, this time with Avastin ( Bevacizumab ) and CPT-11 ( Irinotecan ) – the newest and one of the oldest chemotherapy FDA approved options for GBM. Avastin inhibits the growth of blood vessels. The main side effects are hypertension and heightened risk of bleeding and interference with wound healing. The most significant adverse effects of CPT - 11 are severe diarrhea and extreme suppression of the immune system, which makes Michele highly vulnerable to infections. Radiation therapy is no longer an option—it is so harsh that it can only be administered once every two years.

The current chemotherapy is given in a three-week cycle -- two weeks on and one week off to rest. The drugs are given one day a week (Thursdays) intravenously (IV). It takes about six hours to complete the procedure. The drugs are much harsher than Temodar, which was administered in a pill format. The treatment is painful and has made Michele much more tired and worn out as compared to the earlier procedures. After six weeks of treatment, on or about 30 September, Michele will have her first MRI under this new protocol. We do not expect any decisive information to be obtained from that MRI. Avastin works relatively slowly and may take months to have an impact. Hence, we shall go through another six weeks of treatment and have another MRI in November. If the November results are good, she will be on the three-week cycle forever. If not good, we shall try something else.


One of the side effects of chemotherapy is increased vulnerability to infections. The drugs attack fast growing cells throughout the body -- cancer cells, hair cells, fingernails, and blood cell producing bone marrow. Of particular concern are white blood cells, which fight infections. Michele’s white blood cell count fell to half of the desired count in August and she had a rather painful ten-minute long injection of a drug designed to increase white blood cell production. As is typical throughout this entire treatment process, we are constantly taking drugs to counter side effects of other drugs. The white blood cell count has improved dramatically, but is still less than desired.

A side effect (one of many) of treatment, IV’s, drawing blood samples and testing is that all of Michele’s veins in her left arm have collapsed and can no longer be stuck with a needle. She has one six-inch long strip in her right arm that can be used. So, on 26 August, we went back to the hospital and had a “power port” surgically implanted in Michele’s chest.

The power port looks like a small derby hat and is about an inch wide and one half inch high (2.7cm x 1.2 cm) and has a soft plastic top, metal bottom and a tube (catheter) about eight inches (20cm) long. The body of the power port is completely under the skin on her upper left chest. The catheter runs under the skin, from the port, over her collarbone, and then into a vein above her heart. To use, the IV needle penetrates the skin above the port, goes through the soft plastic top, and is stopped by the metal base. The drugs are then pumped into the port and to the vein.

In summary, we are in the middle of the second round of chemotherapy, which will last through November. On or about 30 September, Michele will have her next MRI, which we expect to be inconclusive. The MRI scheduled for late November will determine our future course.


RKS