April 1, 2013

Dr. Gutin has decided that surgery would not be beneficial. That's all I know for now.

March 29, 2013

We were back to NYC today for a meeting with Dr. Mellinghoff, to discuss what our next steps may be. Since the last scan at MSKCC in November (the baseline scan done at Dana Farber at the start of the clinical trial in December is not in their system yet), his tumor has grown from approximately 6-7.5 mm to an estimated 5 or 6 Centimeters. It is already bigger than the one that they removed last March. It is possibly a grade 4, but still likely to be a grade 3. He is having some symptoms...a "pulsing" sensation in his head, as well as increased tremors in his left arm. The doctors believe that these tremors are actually focal seizures. He also seems to have a weakening in his left hand/arm. The first treatment option is surgery. Dr. Mellinghoff is going to speak with Dr. Gutin (his neurosurgeon) on Monday to see if surgery is a viable option. If so, it will probably take place within the next month. Beyond surgery, there is the option of another clinical trial (if one is available and he qualifies for it), some forms of chemotherapy, re-radiation &/or avastin. The doctor put him on a course of Decadron for the weekend, to see if it alleviates any of his symptoms, and he is no longer able to drive. We are scheduled to return to Dana Farber on Tuesday for bloodwork, etc. to complete the study, and will inquire with them on any other available trials up there. We will speak with Dr. M. again mid-week to discuss our findings in Boston and his meeting with Dr. Gutin. The next several months are promising to be tough times...we will do our very best to remain positive and hopeful, and thank you all in advance for your support.

March 19, 2013

Ken had his MRI & PET Scan in Boston today...long story short, his tumor grew again this month, and has now surpassed the 25% growth allowed for on the trial. In light of the continued growth, the Dr.'s feel that the trial drug is ineffective, and are removing him from the clinical trial. We are not sure yet what the next step will be, the tumor is not "exploding" in growth yet, so we have some time to figure things out, and will most likely return to Dr. Mellinghoff in NYC to explore our options. I will update when I have further details.

February 19, 2013

The latest MRI results show that the tumor is "stable" and Ken will be able to stay on the trial for another month!! There seems to be some question on whether or not there has been any growth...last month we were told that his tumor had grown 15% since his baseline MRI in December. Today they informed us that the actual growth last month had been 19%. The radiologist today determined that this latest scan showed no significant change, and was still at 19% since baseline. The doctor from the trial said that there may be a tiny bit of growth, but not enough to discontinue the trial...and actually the discrepancy may be in how the tumor was actually measured (due to its irregular shape) rather than the tumor actually growing. Ken's blood counts are good, and some of the "issues" he was having seem to have resolved themselves. His CPK has also gone from 350 to 320, and Ken said the EKG that they did this afternoon was fine. All good news, and a great birthday present for Ken!

January 23, 2013

Yesterday, Ken had his first MRI since he began the clinical trial. Unfortunately, the results were not quite as good as we had hoped for...his tumor did grow slightly. However, the study allows for up to a 25% growth in the first month, and Ken's tumor grew about 15%. So, he will be allowed to continue the trial for at least another month. Since it does take a while for the drug to really take effect, the growth may have occurred in the first few weeks of the trial, before the drug had a chance to build up in his bloodstream. The doctor said that this is not the first time that this has happened to someone in this study, so it is not unreasonable to attribute the growth to that. However, if the next MRI also shows growth, then that would mean that the tumor is not responding to the drug and Ken will not be able to continue on with the trial. While yesterday's news was not great; it was not terrible, either...the next MRI should be around February 19th, and we are hopeful the results will be better!

December 26, 2012

Hello, everyone! I am sorry that I haven't posted an earlier update... needless to say its been a long, stressful, extremely emotional couple of weeks. As far as Ken is concerned, he is doing well. He actually received his first dose of the study drug on Tuesday,Dec. 18th. Due to the horrific events in our town, we ended up having to bring the children with us to Boston for the first few days last week. Our dear friend Laura was kind enough to travel from Rhode Island to Boston to spend the day with our kids, so that I could be with Ken at the hospital for "day 1" of the clinical trial. He had to be closely monitored for several days, so once we knew he didn't appear to have any adverse reaction, I returned home with the kids so that they could get back to school, which was in itself an emotional experience. Later in the week, Ken's EKG's were abnormal, and indicated a possible heart attack. On Friday, they performed an echocardiogram and blood tests. The bloodwork indicated some possible damage to the heart muscle, but the echocardiogram was normal, and repeat EKG's were normal. They sent him home for the weekend, with a promise to return on Christmas Eve day. On the 24th, he recieved the study drug and again had an abnormal EKG, then they switched EKG machines and got a normal reading. All very confusing and frustrating. So tonight we are back in Boston...we met with a cardiologist today, who said that he is not concerned. While the EKG may have indicated a cardiac event, his tryponin (?) levels and echocardiogram are commpletely normal. He does have some thickening of the heart muscle, but the cardiologist claims that it is not something to worry about, and he sees no reason to take him off of the study drug. So, he is now on a daily dose...scheduled to return next week for more tests. Hoping you all had a safe and peaceful holiday, and wishing you all a happy new year.

Hello, everyone! As many of you know, it has been a crazy week so far, so I am finally sitting down to write an update. On Monday, Dr. M. called to let us know that one slot had become available for the clinical trial for GDC-0084, which is the trial that we had been hoping to get into. However, we had to scramble to get up to Dana Farber within 24 hrs to get the open spot. Tuesday, we went up to Boston, met with the P.A. from the study, Ken completed the screening tests and signed the consent, so he is now officially in the study! Dr. M. had laid all the groundwork for us by having us visit Dana Farber last July so Ken was already a patient of Dr. Wen (Who is the Physician Investigator on the study), and has been forwarding all of Ken's scan results to Dr. Wen so everyone was already up to date when we arrived. As I understand it (again, I am not very scientific, so I may not have this exactly right), the drug that they are testing is specifically made to penetrate the brain (most drugs are specifically made NOT to penetrate the brain) and to block a certain mollecular pathway, thereby prohibiting the tumor from growing. That mollecular pathway is switched on by a mutation in the P13CA gene. The incredible news that I learned on Tuesday is that they have done genetic testing on Ken's actual tumor (that was removed in March) and it DID test positive for the P13CA mutation. So the doctors at Dana Farber feel quite optimistic that this drug will have a positive effect on Ken's tumor. Their ultimate goal is that while they can't actually cure this type of brain tumor, they may be able to stop it from growing and thereby successfully manage it by taking a simple pill each day, much like they now manage diabetes or high blood pressure!! Ken will begin the Clinical Trial next week. The first four days of the study he will need to remain in Boston for close monitoring. Then he will need to go up to Dana Farber several times in the first month, then it will lessen to once a week. Eventually, he will be taking the pill from home and traveling to Boston twice a month for the duration of the study. As long as he is responsive to the medication, he will remain on it indefinately. The trial is still in Phase one, which is the dosing phase. While he's not in the first control group (on the lowest dose) it is still early in the trial so it is not the most powerful dose, either. However, there is another gentleman that is on the same dosage and his most recent MRI showed no growth so we are encouraged that this is an effective dose. I asked if the dose can be increased if they eventually find that a higher dose is more effective, and they told me that after his third month they are able to increase his dose. There is, of course, a long list of possible side effects, but so far in the study no one has reported any major issues, the chief complaint is of "tiredness". I am so hopefull that Ken will tolerate the drug well, and not have the issues that he experienced during his first clinical trial. Fingers are crossed! That is ALL that I know about everything. I am trying not to get my hopes up, but that is very difficult for me because we left Dana Farber on Tuesday feeling VERY encouraged and optimistic, and extremely grateful to have this opportunity! I will try to update everyone again once the trial has started. Thank you so much to everyone for your well wishes and support!