March 2, 2014

Hello, everyone! I guess I haven't posted in a while...thankfully, there really hasn't been much news to post! Ken turned 50 last week! Unfortunately, the day before his birthday, as he was walking the kids out to the bus, he fell on the ice and ended up with 21 staples in his head. Nothing like a head injury to celebrate a milestone!! We were able to have some fun anyway...two of his brothers made a surprise visit for the weekend, and Ken celebrated his 50th surrounded by friends and family and ended up having a wonderful weekend. This past Friday, he had an his bi-monthly MRI & Dr. visit at Sloan-Kettering. The MRI showed no visible signs of tumor growth. He has undergone 6 infusions of BCNU (in addition to bi-weekly Avastin infusions), which seems to be taking a bit of a toll on him as far as side effects. While the tumor seems to be responding to the treatments, the toxicity also seems to increase with each treatment, leaving him more and more nauseous and exhausted for longer periods of time. With that in mind, Ken is going to see a couple of specialists (in hopes of alleviating some of his symptoms) and then follow up with his doctor prior to the next treatment, and may possibly need to take a break from the BCNU. Thank you all for all of your love & support over the past few months!

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.