22-27 Jun -- Busy Week

Monday 27 June -- Back to M. D. Anderson, Houston

Robert and I met with an assistant professsor of neuro-oncology at M. D. Anderson Monday morning for a second opinion. She reviewed my medical data and treatment plan and concurred with the decisions made so far.

She was impressed with Dr. Fox’s March surgery but, like many others here, she was taken aback at the results shown in the June MRI. Like everyone else, she is not sure, but believes that recurrence of cancer is the most likely explanation. We will meet with her again two days after the 15 July MRI and five days before the proposed surgery date. All future treatment hinges upon the July MRI.

The neuro-oncologist believes that I might be a candidate for one of MDA’s experimental drug programs. We will see about that in July.

Sunday, 28 June -- Warren and Deborah Visit

My son, Warren, came in from California Thursday night and stayed through Sunday. My daughter, Deborah, and granddaughter, Annabel, were also with us as were grandsons Keith and Brennan. It is always a joy to be with family.

Thursday 25 June – Treatment Developments

My medical team had a peer review meeting this week. It was decided to “pencil in” surgery for me on Thursday, 23 July, again by Dr. Fox at St David’s Hospital on 32d Street. The surgery will be done only if the MRI on 15 July shows continuing rapid growth.

Monday 22 June -- Beginning of 2nd Phase Chemo

June 22 was the beginning of the second phase of chemotherapy. It was the same drug, Temodar, as I took during the first phase, but at twice the dosage as before, when I also had radiation therapy. (Radiation can only be used once every two years.) I was able to tolerate the first phase well, but this double dose made me feel pretty awful. I will have a 21 day rest period before the next round of Temodar. I will need it. We don’t know whether we’ll continue Temodar.

Thanks for all the cards and calls. I wish I had the energy to thank everyone personally.

Love you all,

Michele

Down, but not Out

Down, but not out. Friday, 19 Jun 09

We had a long meeting with Dr. Kit Fox, our surgeon, on Friday afternoon. Do only supremely confident people become surgeons, or does their training bring out that trait? The discussion was mostly the same as Thursday's, just a lot more positive in how it was said.

Although he was surprised and disappointed by this week’s MRI , Dr. Fox believes that recovery is still possible. He believes that, if necessary, he can safely remove most of the “high contrast” area around the initial surgery site. However, he does not think that may be necessary, or even useful, based on what we know today.

Although glioblastoma multiforme (GBM) is a rapidly growing, aggressive, cancer; it does not grow so fast that it is critical to do something immediately (unlike the initial surgery, which was needed to relieve pressure on the brain.) He feels like the “high contrast” area seen in the vicinity of the initial surgery is probably a combination of scar-like tissue and GBM.

The key to success is chemotherapy, not surgery. Surgery can never remove all of the cancer cells. Dr. Fox concurs with our oncologist and believes that the wisest approach is to continue with the previously planned Phase II Temodar chemo treatment and add an MRI on 15 July to see what changes have occurred in a month. If the area does not grow or even shrinks, we are on the right track. If it shows growth, we change the chemo treatment, most likely to Avastin. If Avastin does not control the tumor, we move on to other drugs and perhaps field trials of experimental dugs and procedures.

So, in short, we have options available and time to implement them.

The changes and options we are dealing with are difficult. We hope that the choices we deal with, whether from M.D. Anderson, Duke University, or any other university help us get a stronger handle on the disease and the future we are dealing with.

We’ll keep you posted. We love to hear from you. It gives us strength in our future.

Michele Kay

Michele Kay@aol.com

Bad News: 18 June 2009

We went to the doctor this afternoon to get the results of the MRI I took yesterday. Although not conclusive, the GBM cancer appears to have returned in the same area as before the March surgery. The concern is a “high contrast” area seen on the MRI.

The doctor, a chemo oncologist, says that he is not certain of the origin of the “high contrast” area. He says it could be tissue damage from the surgery or tissue damage from the seven weeks of gamma radiation treatment. But, he believes the most likely origin is a recurrence of cancer. He suggests that:
(a) We meet with the original surgeon Friday (tomorrow) to discuss new surgery as an option;
(b) We continue the planned Phase II treatment previously scheduled for next week;
(c) We have an additional MRI done on 15 July to see if there is any increased growth.

Our other doctor, a radiation oncologist, says that the “high contrast” area of the MRI is most probably a new growth of chemo/radiation resistant GBM. She believes that the chance of it being damaged brain tissue is possible but extremely remote.

We are meeting with the surgeon tomorrow, but we are more interested in his recommendations than in surgery because he has already indicated that the risks of resection surgery were severe, threatening the normal functions in the eloquent (speaking, reading, writing) areas of the brain.

We will spend the next few days investigating our options. We will be looking at recently approved chemo treatments and also will consider participating in experimental Phase II drug studies at major cancer research facilities. We have already begun discussions with Duke University.

We will be trying to keep all of our options open until July 15, when the next MRI is scheduled and we’ll need to decide on treatment options.

We will try to post another blog as soon as we have had time to think over everything.

Your support these last few months has been absolutely wonderful. I love to hear from all of you, but for the time being, please e-mail me. I need a little time to absorb the bad news.

Love to all of you,

Michele

Correction

Sorry. The plan is to have an MRI every two to three months, not weeks.

June 9th:Getting There

Robert and I are going to California for a long weekend, starting on Thursday. We get home on Monday. On Wednesday, I am scheduled for an MRI which will decide how successful the radio-chemo procecess has been. Seven-weeks was a long time and I sure hope it was productive.

Assuming this testing is successful, I will be getting an MRI every two weeks. I guess I will get used to the frequency of the MRI. Life is very different. But I think I will learn that the difference is something I will get used to. The first MRI may be tough, but repeated tests will become something I become used to. It is all very difficult, but the difficult is something we get used to.

Michele