MRI Results- End of June

To start this update off, Dad asked that I share the link for my fundraising page for Pedal the Cause again, this is a 20 mile bike ride that raises money for cancer research. 100% of the funds raised go to research at Siteman Cancer Center (where Dad is currently receiving treatment) and St. Louis Children's Hospital. Last year, there were two funded projects that focused on Glioblastomas. The link is below, I really appreciate everyone's support!!! I am about halfway to my fundraising goal and still have almost 3 months left of training.

http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161

Yesterday we had appointments with neurology and medical oncology to get the results from the MRI Dad had on June 27th. This was a routine MRI that is normally scheduled every two months. Both doctors agree that the original tumor located in the frontal lobe looks stable and has not really changed since the previous MRI. He has gotten stronger in his left leg and appears to be doing well clinically-- meaning his appetite, motor function, etc is currently really good.

The new spot they've been monitoring has gotten larger, however there appears to be less blood flowing to that area now compared to two months ago. GBM's are typically very vascular and have lots of blood flow to them, the decreased blood flow starts to point towards something called radiation necrosis. Radiation necrosis is basically just dead, swollen tissue from radiation that can sometimes mimic a tumor. The only way to know for sure if it's a tumor or necrosis would be to do a biopsy, there's no way of knowing 100% one way or another. However between the decreased blow flow and the fact he's doing so well clinically, they are leaning towards necrosis.

Dad will be on tumor board on July 11th, this is basically just a big meeting with all the doctors and they get together and discuss patients, just to make sure everyone is on the same page. For now, Dad will have an MRI in 6 weeks and if the MRI is still stable he will most likely continue the same course of treatment. If the MRI looks worse, at that point there will be no standard of care and we turn to investigational treatment, clinical trials if they are available or possibly immunotherapy.

The first picture is from Father's Day, Mikayla and I got him a blanket with family photos on it! The other photo is from a wedding we went to on June 11th.

MRI Results--May

The doctor's appointments went pretty good last week. They have decided to introduce a chemotherapy drug called Carbopaltin that will be administered through an IV at the same time he gets the Avastin. They are not putting a port in at this time and treatment time is now a few hours instead of just an hour or so. He got his first dosage of both drugs last Wednesday and has been a little more tired and irritable and his appetite is starting to change a little. Yesterday he wasn't very hungry for lunch or a snack but Mom and I grilled dinner for Mother's Day and he went back for seconds and even had dessert!

The picture below is a comparison of MRI's.. the one on the left is from last week and the one on the right is from roughly two months ago. The original tumor is the top spot of the scan and the doctor said it's looking smaller. However there is a second spot that has gotten larger, that's the lower spot. They don't seem too concerned about it at this point and are just going to keep an eye on it. It's not worth putting Dad through a surgery to biopsy it when they're not sure what it is.

May 1st Update

I've heard many comments from everyone that the blog hasn't been updated in a while, let's just say that's a good thing! Dad has been doing so well since starting the Avastin, his appetite is back to normal, his energy is back up, and he's making so much progress at physical therapy. We've noticed only a couple minor side effects from Avastin, Dad bruises very easily now, the site of his last IV treatment has a softball sized bruise and his bicep has some spotty bruising from the blood pressure cuff. He's also on a blood pressure medication now from having high blood pressure, which the doctors say that's a pretty normal side effect.

Dad had an MRI this past Friday (April 29th) and will get the results later this week. I won't be able to go with them but they have a long day of doctor appointments and treatment. They'll meet with Dr. Huang (radiation oncologist), Dr. Anstass (chemo/medical oncologist), Dr. Chicoine (neurologist), have blood drawn, and receive the Avastin.

In physical therapy, they have been working on putting weight on Dad's left leg while walking and weight on the left arm/shoulder while on all four's. He still doesn't have much mobility in the left hand but says he can feel a difference in his shoulder. We're hoping that the further out from radiation we get, the left side will become stronger and stronger. The picture below is from physical therapy the other day. He starts out in that position and then moves his right foot so it's on the table, like the position you would get in when you're proposing.

May is also Brain Cancer awareness month. Unfortunately there is no cure for any kind of cancer, including brain cancer. The only thing that we can do, other than support those fighting, is raise awareness and funds for cancer research. This September I will be riding in my first Pedal the Cause, with a goal of riding 20 miles and raising $375. What I love about Pedal the Cause is that all the money raised stays in St. Louis to fund cancer research. Last year they supported several research projects focused on Glioblastomas, which is the type of cancer that Dad has. I've never been one that's really enjoyed asking people for donations, but this is a cause that has affected my family so much and something that I'm really passionate about. You can click here to access my fundraising page and read more on why I ride.

We really can't thank our family and friends enough for all the support that you guys have given us. We all have our days when things are especially tough but it would be even tougher without our support system. We love you all!!

Making Progress!!!

Dad seems to be making progress in physical therapy! A week or so ago he got a brace for the left ankle to keep his left foot from dragging when he walks. It seems to be helping a lot, he walks much better with it. He's been able to start putting weight on his left leg when he walks, which he wasn't able to do before. Dad also feels like his shoulder is getting stronger, in therapy they've been doing exercises with him on all fours and he's a lot more stable and his able to raise his right hand five times, putting all the weight on his left hand. The physical therapist is thinking that the swelling must be going down since he's making such great improvements.

The Avastin seems to be helping, Dad hasn't showed any symptoms or reactions since starting and with the improvements in therapy, hopefully he continues to improve.

We were able to get a family picture with Mom's side of the family over Easter weekend, think our last family picture was when I was in high school!!

No Clinical Trials For Now....

We found out that the new clinical trial with the VB-111 will not accept Dad into the trial at this time. They want him off the Disulfram from the last trial for at least four weeks and by the time those four weeks will have passed, the trial will have closed. They are going to give him the standard of care medicine, Avastin, as soon as they can in order to attempt to control the swelling. It will still be administered via IV however he should be able to get it at Siteman in St. Peters instead of driving to Big Barnes.

So far he's been doing really well on the increased steroids, his mobility is better and was able to get into Mom's car without any assistance. He's also eating right now, more than he's eaten in a while... I took donuts over there for breakfast the other day and he ate two whole turnovers with a glass of milk. We also celebrated his retirement, he's now officially a RETIREE!!!!

Back Home!!

So Dad was released Friday evening from Barnes. They sent him home with an increased dosage of steroids to take until his appointment with Dr Ansstas (medical oncology) on Wednesday.

After talking with Ansstas prior to being discharged, we got some clarification on a couple of things. They are taking Dad off chemo completely right now, they want to get the swelling down in his brain and chemo does not work fast enough. They seem to be more concerned with the swelling than the actual tumor growth at this point. They are recommending he take Bevacizumab (the same drug associated with the clinical trial, is also considered the "standard of care") whether he participates in the trial or not. This drug attempts to slow down new blood vessel formation and slow down the blood supply to the tumor. They will also keep him on steroids until his appointment and then eventually taper the dosage down once he starts the Bevacizumab (also called Avastin, much easier to pronounce and type). There is a risk with Avastin, approximately 1 out of every 10 people have a stroke, heart attack, or blood clots from being on the drug since it's goal is to cut off blood supply. While this is a low number, it's still something that we have to consider. This drug will not cause any nausea or confusion, which this would pretty much be the only drug he's on that doesn't.

As far as the clinical trial goes, he would receive the VB-111 every two months through an IV and then remain at the clinic for 8 hours afterwards for observation and monitoring. The group that only receives the Avastin is only monitored for a short time after receiving the medication so we will know which group Dad is placed in. He would receive Avastin every two weeks through an IV.  This trial is currently in Phase 3 and appears safe for most patients. We should see an improvement after 1 or 2 treatments and this treatment should hold the disease for approximately 16 weeks, meaning there shouldn't be any tumor growth for that period of time. I read that Temodar (the chemotherapy he was on) can usually hold the disease for approximately 6 months so hopefully the information on Avastin is accurate as well.

Visiting Barnes...

Well, we are back in the hospital again...

Late Wednesday night Dad had a very hard time getting comfortable and couldn't fall asleep. Finally he told Mom that he also had a headache and she took him to Barnes in St Peters. They did another CT Scan which showed swelling in the brain and was putting pressure on his brain and causing his headache. His doctors wanted him down at Big Barnes so he was again transported by ambulance downtown. He was given an increased dosage of steroids as well as a medication similar to Excedrin to help with the headache. Since then he has been feeling better and his headache has been gone for the most part.

Yesterday I wasn't able to be up at the hospital but Mom and Dad were able to talk to a few of the doctors.. We got the results from his MRI he had on Tuesday (this was a scheduled MRI and had nothing to do with his hospital visit) and it showed growth on the tumor. Because of the growth, the doctor running the clinical trial decided to pull him from the current trial with the Disulfrum. His doctors have also decided to try a different form of chemotherapy since the current plan is clearly not working.

We're still waiting to hear from the doctors on what they want to do as far as chemotherapy, but it sounds like they may try one through an IV or through a port. We do know he qualifies for a different clinical trial that is targeted towards a recurrent glioblastoma. I haven't been able to speak to the clinical coordinator yet but it involves two different medications that are given through an IV. One of those drugs is VB-111 that "is designed to try to kill cancer cells in the body by attempting to "cut off" the blood flow to cancer cells and/or tumors. If VB-111 is successful in cutting off the blood supply to the tumor, the tumor may not be able to grow." In this trial, like most trials, there is an experimental group and a control group. The experimental group will get the VB-111 and a second drug called Bevacizumab, while the control group only gets the Bevacizumab. From the little bit I've been able to google search, Bevacizumab is used as treatment for several types of cancer including glioblastoma multiforme and can slow the growth of new blood vessels. According Wikipedia, it can slow tumor growth but does not affect overall survival rate.

We did hear from the doctors via phone and they said Dad will be discharged today, however we are still waiting for them to come by and see him. Thanks for all the thoughts and prayers, I will update once we know a little bit more!!!