New date for surgery

The new date for Ken's surgery is March 13th!

Pre-op meeting with surgeon

Today Ken had some pre-op tests, and we met with Dr. Gutin for the first time. He was very confident, and said that he will remove "all visible" tumor. He cannot "get it all",so to speak, because no one can ever guarantee getting every single cell...and all it takes is one cell for the cancer to grow. One of the main purposes of the surgery is to grade the tumor, and test it for genetic/ molecular abnormalities, to determine the course of future treatment. The tumor is small, and close to the surface, so the surgery should not be too difficult. Ken will be put completely under Anesthesia, and the procedure should take approximately 3 hours. They will do some pathology in the O.R., so he will have a good idea of the tumor grade, but will not know definately until the final pathology is done. At this time it appears that the surgery has been postponed to March 6, but we will know for sure tomorrow.

Surgery may be postponed...

The surgery may be postponed...they are still searching for Kenny's brain. Just kidding, scheduling conflict! :)

Surgery is scheduled

Ken's surgery has been scheduled for Tuesday, February 28!

February 15, 2012

Dr. M. called...after meeting with the Tumor Board, Radiation Oncologist, and the Surgeon, he feels that surgery is the best option at this time.  We were able to get the surgeon that we requested, Dr. Philip Gutin, who is the Chief of Neurosurgery at Memorial Sloan-Kettering.  I am thrilled that he has agreed to take on Ken's case.  It is my understanding that Dr.Gutin feels that he will be able to remove the entire tumor.  Opting for surgery has many advantages over the clinical trial.  If Ken were to participate in the trial, he would need to remain on the Avastin permanently, thereby making him ineligible for other therapies.   Having the surgery will not only remove the tumor itself (always the best option!) but also allow them to test for Molecular abnormalities and to grade the tumor.  Thankfully, Dr. M. feels that the tumor is a grade III, but it is still possible that it is a grade IV,and the only way to know is to take it out.  I inquired about the genetic mutation IDH1, and he responded that while there is no medication available at this time, they would test the tumor for the genetic mutation so when a targeted therapy does become available, we will know if Ken qualifies.  When the previous surgery was performed three years ago, they didn't even know to test for these things yet.  Such advances have been made in so short of a time!   So having the surgery (and not being on Avastin) could potentially open the door for future treatments for Ken.
As scary as brain surgery is, we do feel that it is the best option at this time, and, while not a cure, could "reset the clock" on Ken's cancer.  I also truly feel that with Dr. Gutin we are in the very best possible hands.

February 10, 2012

Ken had his first MRI since beginning chemotherapy.  The tumor has grown, slightly.  It was approximately 1.4 centimeters on January 13, and now is 1.9 centimeters.  Dr. M. feels that this warrants further action than the Temodar.  The fact that the tumor has grown means that it is likely a more aggressive tumor than the original one.  Worst case scenario is that the new tumor is a grade IV.  The options include surgery, but he feels that they may not be able to get the entire tumor out without affecting Ken's motor function; however, the decision lies with the surgeon himself.  The second option is to enroll in a clinical trial at Sloan-Kettering.  The trial would be a combination of a very focal radiation therapy, combined with the drug Avastin.  It is thought that the Avastin increases the oxygen flow to the area being radiated, therefore making the radiation more effective.  He says he has seen some success with this, and there is a trial opening on February 16.  The trial involves Avastin via IV Infusion once, then again in two weeks, followed by three doses of radiation.  In reading the trial materials, it seems that following radiation he would be on the Avastin indefinately (perhaps the rest of his life?).  Dr. M. needs to present the case again at Tumor Board, then meet with the Surgeon, and the radiation oncologist.  Then we will come up with a plan.

Chemotherapy

Ken completed his first course of chemotherapy from January 24 through January 28.  The dosage is by weight, so being such a big guy, I think he is on a pretty high dose.  In any event, the chemo made him pretty sick, and he spend a good deal of time in bed.  He seemed worse in the mornings, so he usually was up and about in the afternoons.  Poor guy.

January 13, 2012

Who schedules an MRI for Friday the 13th???   bad move...after 2 1/2 years of stability, there is a "new growth".  It is very small, but must be "dealt with".  It is in his right Parietal Lobe, very close to the cavity of the original tumor.  Our Attending Physician, Dr. Mellinghoff, met with the "Tumor Board", the Surgeon, etc., and the plan of action that we decided on was two courses of chemotherapy, which is a pill called Temodar, to be followed by surgery if they determine that the tumor is not responding to the Temodar.  The fact that the cancer has returned within a 3 year time frame leads us to believe that the original tumor was, in fact, a grade III (not a grade II as Yale had told us).   I am thankful that we took a proactive approach and went with Sloan-Kettering.  We have a great relationship with Ken's doctor, and we both have great confidence in him and his facility.

I am creating this blog for those of you who wish to keep informed on Ken's condition. We are so blessed to have so many friends, family, and neighbors who have so thoughtfully inquired about what's been going on, that this seems the easiest way to keep people up to date.
I have pretty much NO medical knowledge, so this is only my interpretation of what the doctors have told me, and while I try to keep it as factual as possible, I may at times misinterpret things.

History

In 2008, Ken was Diagnosed with an Anaplastic Astrocytoma.  After the initial discovery of a brain tumor at Bridgeport Hospital, he had Surgery at Yale-New Haven Hospital, during which they removed the majority of the tumor, but were forced to leave a small part in for fear that his vision would be affected.  Yale determined that the tumor was a grade II, and no further action needed to be taken, other than monitoring every  6 months with an MRI.  We sought a second opinion through Memorial Sloan-Kettering, who graded the tumor as a grade III, and sought to take action against the portion that remained.  We obtained a third opinion from Mass General, who was somewhat "in the middle", but leaning toward Sloan Kettering's diagnosis of a grade III.  So we settled on the fact that the tumor was probably a "low III or high II" and opted to continue treatment with Sloan-Kettering.  We were told that the cancer would return, and  took an aggressive stance, hoping to stave off future growth and have some quality time before its return.  Ken went through radiation therapy, followed by chemotherapy, and has been "stable" for about 2 1/2 years.  He has been monitored with MRI's every 2 months, then every three months, and then finally every four months.