Another trip to San Fransisco, and we were blessed with another "status quo" report. At this time, Heather's tumor does not appear to be growing and appears to be surrounded by dead cells. We cannot ask for any better news.
We had a discussion with Dr. Chang regarding the vaccine that seems to be doing well in trials. Currently, UCSF is participating in a trial using the vaccine. However, unless Heather needs another surgery someday, she will not be able to use the vaccine because the vaccine is made from the patient's tumor. In addition, there is only one direction that Heather's tumor could grow for her to even be eligible for surgery. So, no growth = no surgery anyway. I'm all about keeping it "status quo."
We return in two months for another MRI and check-up. Someday we will have to wait three months between visits, but I don't know if we will ever stretch it longer than that - at least not for a LONG time from now. I know how blessed we are that Heather is doing well right now. I know others who are not doing as well, and my heart aches for them. But no one is without hope, and I believe researchers are making strides in the fight against brain cancer.
Heather has taken a little break from wedding plans, but we will start again after the holidays. Speaking of holidays, we are almost ready. I started my shopping with a specific list and before Thanksgiving, so I am almost finished. The house is decorated, the presents are wrapped and under the tree, and a few treats have been made and are in the freezer. I feel good :) I love the holidays - the lights, the music, the shopping, the decorating - everything! And getting good news is always a blessing.
Amy comes home late on December 23 and leaves on December 27, so our family will once again be together for the holidays. No matter how many gifts are under the tree, the best gift of all (other than health) is family being together. We truly appreciate and honor our gift of family and good news for this holiday season. From our family to yours, we wish you a happy and safe season of love, peace, and togetherness.
Sue
Saturday, December 12, 2009
Tuesday, December 1, 2009
LFAC Is Spending Some Money
After another successful Monster Bash and another successful Pampered Chef Open House, Leap-for-a-Cure is finally going to spend money! Several doctors, including Dr. Long - Heather's neurosurgeon - have asked to purchase an fMRI (Functional MRI). This technology helps to further examine the anatomy of the brain and helps to determine precisely which part of the brain is handling critical functions such as thought, speech, movement, and sensation, which is also referred to as brain mapping. The fMRI monitors the growth and function of brain tumors and helps to guide the planning of surgery, radiation therapy, or other treatments for the brain. Before Heather's first surgery, she had to go to another hospital for this procedure. Although the purchase decision is not final, the doctors are working together to purchase a machine to help with brain tumors.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
In addition, a summer conference / seminar is still in the planning stages. Again, several doctors, including all of Heather's, are involved. Again, the keynote speaker will be Dr. Susan Chang, Heather's neuro-oncologist in San Francisco.
In an age where science seems to do the unimaginable, only three new brain cancer treatments have been FDA approved in the past 25 years. This must change. For the patients living with glioblastoma, the families that support them, and the doctors that treat them, finding improved treatments is not an option—it’s a necessity. Although there are probably many research ideas that I do not know about, I have heard of two which provides some promise.
First, the Ivy Glioblastoma Atlas Project will show which genes are active – or not functioning normally – within a glioblastoma tumor at a level of detail not previously possible. The development of better therapies depends on understanding the key molecular changes that drive brain tumor behavior. Since glioblastoma is a highly heterogeneous disease—meaning that brain cancer manifests itself differently in each person—it is challenging for researchers to discover effective treatments. Each treatment plan needs to be highly personalized and the development of better patient therapies depends on an improved understanding of the differences in brain tumors. This detailed information from the Ivy Glioblastoma Atlas Project will move us closer to making personalized medicine a reality.
Second, a vaccine for treating a recurrent cancer of the central nervous system that occurs primarily in the brain has shown promise in preliminary data from a clinical trial at the University of California, San Francisco. The vaccine actually provokes a tumor-specific immune response that is patient specific. T-cells, the killer compound of the immune system, track down the cancer and try to kill it. The vaccine concept is not new, but until now, it has been used as a treatment of last resort, reserved for patients whose brain tumors showed evidence of reoccurring. UCSF used the vaccine at the beginning of a patient's brain tumor treatment regimen. It was a quick injection that will be followed up with others in the weeks to come. So far, so good. The idea is to combine the tumor vaccine early, while the cancer is being weakened by chemotherapy and radiation. The hope is patients will then be able to manage the disease using their own immune system. "The best outcome would be that...we convert this deadly cancer into a chronic disease, like diabetes or hypertension. Something a medication can take care of, that's our goal." WOW - we could happily live with that!
Wedding update: Plans are moving forward for Heather and Mike's big day: July 31. Her wedding dress is hanging in one of our closets and will be altered later this spring. All the bridesmaids' dresses are ordered, the church and our minister have been secured, the band and photographer are good to go. I know we have much work yet to do, but I feel we have a good start. We will be meeting with the caterer and deciding about the cake sometime in January. Of course, there are so many little things - things I will probably forget - that need to be done. No matter what, the day will be SPECIAL!
Heather and I head to San Francisco on Sunday for her bi-monthly appointment. Because she is no longer taking chemo, we are a bit more anxious than usual for a good "status quo" report. I will keep you posted. As always, please keep Heather in your prayers.
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