April 29, 2013

I realized today that I haven't posted an update in a while...it seems that the past few weeks have just been crazy busy! Ken had his first round of chemo on April 11th. He received two drugs: Avastin (which he will receive every two weeks) and Carboplatin (which he will receive every 4 weeks). So far, he seems to be tolerating the drugs pretty well. The Carboplatin is the harder of the two drugs to tolerate and has more side effects, so he has to increase the steriods and take nausea meds before and for a few days after recieving the drug. The first weekend he was nauseous, and extremely tired, but his symptoms seemed to subside within about 4 days. He's had a few other minor issues, but nothing too terrible so far. He had his second round of Avastin today, which he seems to have breezed right through. The biggest side effect of the Avastin is an increase in blood pressure, and his blood pressure has remained stable thus far. In other news, his latest MRI results were good, his tumor is "stable" when compared to the March 19th MRI, and shows no significant change. His headaches and tremor seem to have subsided as well, and Dr. M. is starting to decrease his daily steroid, which makes me happy. Hoping the rest of the month continues to go well!

Starting Chemo...

After many phone calls & discussions with various medical professionals, Ken will be starting Chemotherapy tomorrow. We traveled back to Dana Farber, whose doctors concur with the surgeon's decision not to operate. Apparently, the tumor has grown quite a bit (especially between February and March) and is too "fluffy"...meaning ill-defined and invasive, so they won't be able to remove a significant enough amount to justify the risk of surgery. There are no clinical trials available at either Sloan-Kettering or Dana Farber at this time - or anywhere else within a reasonable distance from home. I have also checked several cancer centers, including M.D. Anderson and the Mayo Clinic (all locations), both of whom offer some interesting trials, none of which Ken seems to qualify for - either due to tumor grade, size, or operability. Due to the agressive nature of the tumor, Dr. M. Does not want to delay treatment any further, so Ken begins Avastin tomorrow, to be combined with a second drug at some point (I think tomorrow is only the Avastin). We met with a local oncologist today - because the Avastin is a "protocol" drug, he can eventually recieve his infusions here in CT and cut down on our commute to NYC. That's all I know for now...he has an MRI scheduled for Tuesday, and a visit with Dr. M. The following week.

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!