September 6, 2013

Another great day in NYC! Ken's MRI remains stable! The majority of his symptoms can be attributed to side effects from the chemotherapy and the steroids. We enjoyed a wonderful summer in which we were able to to take many small trips (a great weekend in R.I. culminating with a Whale Whatching "adventure"!), and hang out at home with great friends (hours well spent!). The highlight of our summer was spending a week in Pennsylvannia with ALL of Ken's brothers - a rare occurrence - during which he also got to visit his and spend some time with her. Many precious memories were created!! Now we are settling into the school routine...looking forward to all of the usual fall activities. Ken's next MRI is scheduled for November 1st.

July 19, 2013

We have been having a very fun and busy summer! Ken received his first infusion of BCNU about 6 weeks ago. He tolerated the new drug very well, and his symptoms seem to have subsided quite a bit. He continues to receive Avastin every other week, which is now done locally at Danbury Hospital with Dr. Rella. This is working out quite well for both of us as it is so much more convenient than traveling all the way into the city for a 20 minute infusion! In between treatments, we have been taking advantage of his renewed strength and have enjoyed wonderful weekend travels to Rhode Island and New Hampshire, as well as trying to spend as much time as possible simply having fun with friends and family. We both truly treasure these times and are so greatful to everyone for making them all possible! Today, we returned to New York for his MRI & appointment with Dr. Mellinghoff. I am happy to report that his scan was stable, and even shows a slight improvement over the last one!! Unfortunately, his white blood cells were too low for him to receive the BCNU today...he did get the Avastin, and we will try again for the BCNU next Friday. Overall, though, we were both relieved and happy with today's results! The next MRI is scheduled for September 6th!

May 30, 2013

Hello, everyone...I am sorry it took me so long to post an update, but sometimes I have a hard time believing that anyone actually reads this blog until someone asks why I haven't posted! Ken had his MRI and appointment with Dr.M. on Thurseday. The MRI results are a bit complicated, so the following is my attempt at an explanation. The Avastin affects the blood vessels in the tumor, so it absorbs less contrast during the MRI. This makes it appear differently on the scan...actually, when you look at the scan (compared to the previous month's scan) the tumor almost looks like it's dissappeared. In fact, the official read from radiology shows no significant increase in size. However, the reading is somewhat misleading, and in reality the tumor may have actually grown slightly. Due to the new growth, coupled with the fact that Ken is now beginning to show some symptoms, Dr. M. has decided to change his chemotherapy regimen. He will continue to recieve the Avastin every two weeks (which will now be administered locally), but he will now be receiving BCNU (instead of Carboplatin) every 6-8 weeks. The tumor seems to be growing into the Occipital Lobe, which explains some of his symptoms (some of his balance issues may be related to a deficit in his visual field). He also has been having some headaches as well as some tingling and shakiness along his left side. Other han that, he is feeling pretty well, and continues to enjoy volunteering at the kid's school - for some reason, all of the kids there treat him like some sort of rock star! We are both looking forward to spending a few days away as a family in either Cape Cod or Rhode Island in the near future!

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!