Good Meetings at Duke
We went to Duke and were very impressed. We are going to work with them and they are going to allow the Atlanta Cancer Care Center to administer the chemo, which begins in five days. I’m hopeful and enthused.
People frequently ask how big my tumor is now. It’s approximately 3 x 6 x 3 centimeters — bigger than we want it to be. It’s causing edema (swelling) of healthy brain tissue and I believe that I occasionally feel a sensation of pressure behind my right eye because of it.
The Grand Mal Seizure which began my adventure was easy to identify as a seizure. I collapsed and was unconscious and it took me a while to revive and a few minutes more for my thoughts to become clear. This has not happened more than that one time. What has happened only very recently are some strange occurrences which Duke suggests are known as “focal seizures.” Here are a few examples:
- Tina and I were watching a movie. I start looking around trying to identify a faint rhythmic noise I think I hear behind me. Maybe it was part of the movie soundtrack or my cat’s electric drinking water fountain. I never figured it out and it went away.
- On a half dozen occasions, I’ve had intense sensations of déjà vu or flashes of situations that remind me of a movie or song that I can never identify. It’s hard to describe. It usually fills me with excitement and is quite enjoyable.
I continue to ride. If I ever have the slightest waver in balance or coordination or fogginess of thought, I wouldn’t even think about riding. I’m sure chemo will impede my riding for a while and I’m okay with that. My goal is to fight to ride another day.
That’s the meat of this update. Below are the tedious details which may only be of interest to other GBM patients. I forewent my usual attempts at clever rhetoric.
All the Details
Our appointment at Duke’s brain tumor center was seven hours long and involved separate meetings with various people (neuro-oncologist, RN, trial advisor, clinical pharmacist, nutritionist, social worker,) to discuss my options. They were so thorough and helpful, that I realize this may have been the best facility to go to in the first place. I suppose I had to go through all the trials I’ve been through in order to appreciate the value that Duke actually has to offer.
The one thing that is clear is that I need to take action as soon as possible to stop the tumor from growing. Otherwise I’m likely to become symptomatic (memory, speech, vision and mobility problems), suffer seizures, and risk death.
I will begin a treatment of Avastin and Irinotecan next week. I will also considering whether or not to supplement this treatment with another chemotherapy, Carboplatin, which is supposed to improve survival in people who are Avastin-naive, which I am (that is, I’ve never been on Avastin before).
All three of these agents are delivered intravenously. The first treatment will take about 3 hours to complete (almost 5, if I decide to go with Carboplatin). I will be treated in Atlanta but have to return to Duke every two months for MRIs and evaluations.
I did qualify for one clinical trial (AMG-102). Again, risks outweighed potential rewards. My apologies to future GBM patients whom I may have let down by not helping determine the toxicity of this investigational drug.
We feel empowered and energized after meeting with the team at the Preston Robert Tisch Brain Tumor Center. I suppose since they focus solely on brain cancers they probably truly are the top facility in the nation. I know the other places we’ve been to, Emory, UAB, Rush, are good but they have dozens of other cancers to know about and patients with other cancers to deal with, so how could they always be affluent in my needs for GBM? Those other facilities were hectic with hundreds of other patients when we had appointments. In contrast, Duke’s building was calm. Instead of the usual doctor visit of, wait in the lobby a long time and have a quick visit with the doctor, we had a very short wait and as much time as we wanted with the doctor.
I think I was wrong about Avastin. I thought it was a rough treatment which would be difficult to tolerate. I thought it was really for treating people who were in bad shape and treated symptoms rather than shrink the tumor. I developed this opinion based on my own internet searches and possible misguidance from an oncologist.
I’m now under the advisement from Duke that it has become one of the top treatments for GBM, being administered to newly diagnosed patients along with the Standard of Care treatment. It not only stabilizes tumors, but CAN shrink them.
I have so much faith in it now that I’m ready to begin today.
About the Chemo
Irinotecan is going to help shrink my tumor without debilitating me. This is what I believe, so it must be so.
As of this post, I’m undecided about this chemo. As soon as I click the Publish button, I’m calling up my local oncologist to see what her thoughts are. Carboplatin targets cancer cells and causes DNA to kink, killing the cell.
Great news, Ken. We are also excited about Duke and the convenience of chemotherapy in Atlanta.
Keep up your brave fight.
Liisa and Ken
What an uplifting post! I am so happy you have a new beginning and so many reasons for an optimistic outlook! Keep on truckin’!! xxxooo
I’m so glad to see you smiling in the pic. I hope you add the carboplatin and go with a “cocktail” approach that Ben Williams, PhD and a GBM survivor, suggests, as long as the mix is tolerable. Give that GBM hell, Ken!
Ken, you sound great and the news sounds very good. Best of luck. You have our love and prayers. Amelia
Very positive news. Great to hear. Keep the faith.