Huge Update

This is by far the hardest update I've had to write. I meant to update earlier today, but it took a lot more mental preparation for me to write than I thought it would. (And maybe some wine.)

Dad had another MRI this past Monday and had an appointment with Dr. A on Wednesday. The original tumor and necrosis appear to be stable compared to the last MRI that was 3-4 weeks ago. However, the third tumor has grown slightly in just a short amount of time. This change was not enough for the doctors to change any part of his treatment. We also heard back from an independent research company that had requested a portion of Dad's original tumor to run some more tests on it and see if there was any mutations to it that could potentially respond to medications. Unfortunately, there are no drug-able mutations and at this point we have exhausted all possible courses of treatment. The swelling that caused problems shortly after Thanksgiving seems to have stabilized and we are decreasing the amount of steroids he's on. We'll go back and see Dr. A in about 4 weeks.

Dad also came to the decision this week that he is going to stop receiving chemotherapy. This was not an easy decision by any means, but as a family, we are supporting Dad's decision while he's healthy enough to make that decision for himself. It was discussed with his team of doctors who basically said there is no right or wrong option when it comes to stopping or continuing treatment. Sometimes it is better to stop treatment sooner, rather than later, so you can really enjoy what time you have left. Chemotherapy is poison going into your body and if you wait too long before stopping, you can be too sick to enjoy the rest of your life. There is no predicting how fast or how slow the cancer will progress. The third tumor will more than likely continue to affect his eyesight.

Dad is going to remain at home for as long as possible, and as long as we are able to properly care for him. We are continuing with our holiday plans as usual and do not plan on making or discussing any end of life decisions until after the holidays.

On a different note, I never shared our family photo from Thanksgiving on here! We went to my aunt's house (as a family of 6!) and one of my lovely cousins took our photo.

Back at Barnes

Some of you may have saw on Facebook that Dad was back in the hospital. Saturday night Mikayla had to call an ambulance for him because while he was using the bathroom, his legs gave out and Mom was barely able to catch him and prevent him from falling onto the ground. Mikayla and Mom were able to get him into a wheelchair but Mom knew something wasn't right. I was actually at work and went over to Fire/EMS dispatch and called Mikayla and watched the GPS on the ambulance that was en route over there. Medics determined he was stable but decided to transport him to Barnes St. Peters to get checked out. Once at the ER, they treated him for dehydration (he hadn't eaten or drank much that day) and were waiting for lab results to come back and then most likely release him. They decided to do a CT scan just to check everything out which revealed that there was some significant swelling in his brain as well as some bleeding.

At that point, the St. Peters doctors talked to the Big Barnes doctors and decided to transport him downtown between 4 and 5 am on Sunday morning. Being a 911 operator has it's advantages, I was able to let Mom and Kayla know when the ambulance was on it's way to transport him! Most of the day Sunday was just a waiting and observation day with an increase of steroids to try and help the swelling. He did seem to be feeling better by that point.

This morning (Monday), Mom, Mikayla, and I all got up to the hospital around 9:30 am. Dad was very agitated and not like himself at all. Physical therapy was able to get him moving around a little bit and he went from the hospital bed into the recliner with only a little difficulty. He didn't have his cane and being at the hospital, have to move and hold onto things a little bit differently than he would at home. 

 After therapy left, he took a nap and woke up when they came to get him for an MRI. There was some debate over whether or not he was going to be able to take a Xanax before the MRI (he's been taking one before MRI's to help with claustrophobia) due to him being very sleepy. They don't like to give Xanax in those types of cases because it can slow and ultimately stop your breathing. However the doctor did give the OK for him to have it before his MRI. When he got back from the MRI, he seemed much more like himself, was making jokes, not agitated, and was asking for lunch. He finished off some pasta Kayla and I had for lunch and then was asking for sweets and ate some smarties (shockingly, didn't ask for orange sherbert!).

We got the MRI results back fairly quickly and it looks like the original tumor as well as the new "tumor" we've been watching look fairly stable compared to his last MRI, however there looks like there's some inflammation where the necrosis (damaged tissue from radiation) is, or what we refer to as the second spot.  Overall, the swelling and the bleeding have decreased since the CT scan but there is still some minor spots of both. Due to the bleeding, they haven't put him on any blood thinners to prevent blood clots in his legs.

Dad doesn't know this, but unless Dr. Ansstas (the primary oncologist) has something different to say, he will probably be released from the hospital either tomorrow or Wednesday. They said he could either go to another rehab facility place for some extensive physical therapy or if we were comfortable taking him home and doing home health and having a physical therapist come to the house, they were okay with that. Obviously, Dad would prefer to come home so as of right now, that is the plan. We haven't told Dad any of this because he tends to fixate on things and if we say he might come home on Tuesday and they end up keeping him, he'll get agitated and upset. He doesn't have much sense of time anymore and easily gets confused. He might think something that happened six hours ago just happened an hour ago or vice versa. This is his new "normal" though, ever since he had all those seizures back in August.

I think that's everything that happened over the weekend. As usual, keep us in your prayers and if anyone would like to come visit, give Mom a call!!!

Seizure Doctor Visit

So this week, the family met with a doctor that specializes in seizures and seizure control. This was a doctor that Dr. A had recommended we see to help keep in control of the seizures. We learned that while Dad was in the hospital back in August, he had 27 seizures over a 2.5-3 day span while he was hooked up to the video/brain wave monitoring. Definitely not something you want the high score in!!!! These seizures were seen only in brain waves and they were near the right side of the brain near the edges of the tumor, according to the specialist.

At this point with his medication, we have to weigh the benefits and the risks of altering his medication. We think his extreme tiredness is partially caused by the seizure medication, however changing his medications too much could cause more seizures to occur which we obviously want to avoid. At this point we are not going to make any changes and just see how things go. We'll go back in 6 months for a follow up appointment.

Next week we have another MRI (already, time has flown!) to check the 3rd spot and see if there have been any changes. Prayers for good results would be appreciated!!!

Mid October Update

Dad had a regularly scheduled MRI this past Monday and then his round of doctor appointments and treatment on Wednesday. We met with the neurologist who told us that there was no change on the MRI and that there were no signs of growth. He cleared Dad to start physical therapy again and is keeping his medication the same, however when we meet with the seizure team, they might make some changes, but was pleased overall with how things were looking.

We then met with Dad's oncologist who saw something very different on the MRI. The original tumor and the second site with possible radiation necrosis showed no change however he did see a new third spot that is concerning. They cannot for sure confirm that it is a new tumor, but it shows some blood flow to the area which could mean there is some disease progression. It is out of the radiation field so they do not think it's radiation related. This new spot is in the area of the brain that controls vision, which explains why Dad has been having trouble seeing. His peripheral vision is significantly decreased and has difficulty seeing things, like his phone screen. He's also said that sometimes he doesn't see things, like a cup sitting on the table. They are going to do a repeat scan in 4 weeks and continue treatment as planned, with an increase dosage in steroids. If the scan shows improvement, they will lean towards this new spot being radiation necrosis although it seems very unlikely. If it is a tumor, it is likely that it will continue to grow.

Obviously this was not the ideal news that we wanted to hear, but Dad has proven that he is a fighter and we will hope and pray for the best. <3

Pedal the Cause and Dad Update!!

Just to let everyone know, I survived Pedal the Cause! Mom, Dad, and Mikayla were able to come out and cheer me on as well. I had a ton of fun and even though I was riding for fun and not time, I was able to finish in roughly 1 hour and 53 minutes. Thank you to everyone that made a donation, as of now I have raised $545 for cancer research!!!

If anyone is still wishing to donate, you can do so until October 31st! Here is the link: http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161

Right now, we are looking at getting Dad a power chair. He's still walking however his current wheelchair is a push chair and it's getting a little rough looking. This chair will be more comfortable for Dad when he needs to be in it for longer periods of time (mainly doctors appointments and errands) and will allow him to move himself instead of having to have someone push him. It's a slow process though and will probably be a month or two before he is able to get it. Mom and Dad are looking at getting a new vehicle to transport the wheelchair, which also adds to the timeline.

Dad also got a port put in last week. We're hoping this will make blood draws and treatment more comfortable for him as it was getting harder and harder for the nurses to find his veins. His next treatment is this Wednesday and they'll access the port for the first time!

This past weekend we also celebrated Dad beating the challenge his very first doctor gave him. Before we started going to Siteman, the doctor told Dad he had 14 months to live and that he should go home and put his feet up. Dad has clearly beaten this challenge and the whole family celebrated at Joe's Crab Shack!!!! Dad ate an entire Maine Lobster and crab legs! We had no idea how to clean a lobster and I ended up reading step by step instructions to Mikayla while she cleaned it. It was so awesome to see Dad enjoy a meal as much as he did!!

Mid September Update

Dad has been back at home for just over a week now. He's very glad to be home (obviously!) and seems to still be making progress in getting back to where he was prior to all the seizures. Since he's been home, he's gotten a lot better about knowing what time it is and whether it's day or night however he's usually awake and ready for breakfast around 3am.

He's really not supposed to leave the house unless it's for doctors appointments until he gets a little stronger. There is a home health nurse that comes each day to help out and then physical and occupational therapy also comes to the house.

In the near future, we're going to end up getting a power chair for Dad to use. While he doesn't need a wheelchair 100% of the time, it will make it a lot easier for him to get around. Mom and Dad are also going to look into getting a van which will make transporting the power chair much easier as well.

Dad is going to have a port put in next week, which will allow for easier blood draws and eliminate him getting stuck with a needle all the time. It's gotten harder and harder for the nurses to find arteries when they need them and causes Dad's arm to get pretty bruised from time to time.

Pedal the Cause is next weekend and I'm super excited! I've raised $500 so far however there's still plenty of time to donate!!! Thanks to everyone that's donated so far, I couldn't have raised so much without your support!! Don't forget,100% of your donation goes to cancer research at Siteman Cancer Center and St. Louis Children's Hospital!!

Here is the link for anyone still wishing to donate: http://stlouis.pedalthecause.org/riders_profile.jsp?MemberID=79161

Rehab Update #1

Dad has been at the rehabilitation facility since Thursday evening. His appetite has gotten much better and he tends to eat most of, if not all, of his meals. Mikayla brought home almost 3 pounds of blueberries from their trip to Michigan and Mom has been bringing him some every day... and they're almost gone.

Therapy usually comes in at least once a day, and on Friday he took around 12 steps. Saturday he went down to the therapy room and walked the parallel bars. He also walked across the room and got out of the chair with him doing most of the work. Therapy does tend to wear him out and he's usually ready for a nap afterwards.

When the weather cooperates, Mom and Dad will go out and sit in the courtyard for a while. Dad does still have some confusion, especially when it comes to what time of the day it is. I'm sure part of this is from being in a "hospital environment" however they did speak with the doctor on site who said part of it could still be from the past seizures or it could be from his medication. We're going to let his body rest a while longer and see if there is any change.

Overall, Dad seems to be doing MUCH better over the past couple of days. If anyone is interested in visiting, let Mom or I know and we will figure out a good time. The center has a 24/7 visiting policy however he does have therapy during the day. We have a follow up appointment with his team of doctors on Thursday and hopefully we'll get a future game plan.

Monday Afternoon Update

So we're obviously still in the hospital but Dad seems to be doing MUCH better than he was a couple of days ago. He is making a lot more jokes and giving all the nurses and other stuff lots of trouble. The nurse just asked him if he needed anything else and he asked for the winning power ball ticket and he'd give her a quarter if she found it. He's still hallucinating a little bit, earlier he saw balloons where there were no balloons, but he's been talking up a storm and makes sense a good majority of the time.

Dad said that while he was having these "spells" he could hear everyone and knew what was going on in the room, hence why he was able to squeeze the doctors hands when they asked. But he said it was like having a foot in two separate universes, one was the real one and the second was where all the hallucinations were happening. He does seem to remember most of what happened in the real world while he was in his alternate universe.

The results from the spinal tap came out negative, so he was taken out of isolation on Saturday (yay no meningitis). They did take all the wires off his head from the EEG today and he was very happy about that. We haven't gotten the results back from that yet. At this point, we're mainly looking at seizures being the culprit for all of this, but we haven't gotten a for sure answer yet.

He has started to eat more than he was a couple days ago, for lunch today he had part of a turkey burger, applesauce, lemonade, and of course, orange sherbet. He's also had a sweet tooth (not enough orange sherbet I guess) and has been asking for candy.

Once they determine Dad is well enough to leave the hospital, he will be going to a local rehab facility for a short stay. It took a little convincing from Mom and I to get Dad on board but we feel as though this is going to be his best option to get his strength back as quickly as possible. He's very determined to go back home!

Saturday Morning Update

Not much to update, but Dad did start having seizures yesterday. They took him down for his spinal tap around 2:30 pm and while he was having that done, he had a seizure. His floor nurse happened to be with him, however he was not hooked up to the EEG at the time so unfortunately that seizure was not recorded. He had another seizure around 6:30 pm right before Mom and I were leaving and he was on the EEG that time. The only noticeable symptom is his eyelids fluttering, however his eyes are mostly closed during it. A few minutes after his seizure ended, I asked him if he was okay and he said he was and that he felt fine.

Even with the 24 hour EEG and his seizure, they were able to finish the spinal tap. It's going to be several days before we get the results, which means he will be in isolation for several more days.

Dad's currently on antibiotics, anti seizure medications, and fluids. He's not really eating or drinking now and they've switched all his other medications to IV instead of pills because he wasn't able to swallow water.

Mom and I are figuring that this is going to be a pretty lengthy hospital stay and I'm figuring there won't be much to update until Monday at the earliest. Thanks to everyone for your support. <3

August Hospital Stay

So we're back in the hospital again. I have no idea where to even start so I guess I'll just start at the beginning, that usually seems to work.

Late Wednesday night (the 17th), Mom noticed Dad staring off at the fireplace in the living room and seemed very dazed and didn't really answer questions, other than an occasional yes or no. He said he knew who Mom was but couldn't remember her name or his name. Mom called an ambulance and while she was waiting for them, she called me. I was down in Springfield, MO for a fishing trip with my boyfriend and once she said the ambulance was there, Jim and I packed up our bags real quick and started the drive home. Dad was transported to Barnes Jewish in St. Peters and was still there by the time we got up there, around 2:45am on Thursday morning. They did a CT scan and blood work which all came back looking normal. At that point, they felt like he was pretty stable and decided to make the transfer to Big Barnes, once they had a room ready for him. He was transported to Barnes St. Louis between 5:30-6:30 am Thursday morning.

By the time Mom and I got to the hospital, he was in a room in a part of the hospital we didn't even have patient rooms! Any other time he's been in the hospital, he's been on the south campus so naturally, that's where we went. Turns out they had him on the north campus, which is the same building he's gotten treatments and radiation in. He's even on the same floor where his doctors offices are, just on the other half! Mom and I had a nice 25 minute walk from one campus to the other.

Thursday morning he had an EEG which monitors brain activity. The test lasts about 20 minutes and records brain activity while the technician notes what he's doing physically. Those results came back fairly normal, which means during the time they were recording, he did not have any seizures. However, this only provides a snapshot of what's going on right at that moment, and doesn't give much information as to what might have happened in the past. They were able to rule out a stroke, based on his eye movements and a couple other things.

He didn't really eat much yesterday but we were able to feed him a couple bites of mashed potatoes and some orange sherbet. Later yesterday afternoon, he said he NEEDED some orange sherbet and ate another container of it. He also ate some Thrive, which is basically ice cream with protein and nutrients added to it. Around dinner time, we asked him if he'd like a strawberry Ensure drink and while he didn't say yes or no, I put the straw up to his lips and he drank the whole thing.

It's really hard to explain what Dad is like right now but I'll do the best I can. He is laying in a bed and tends to lean to the right, which seems to be a little bit better today. He'll look at you for a short amount of time, then he'll go and stare off into the corner or at the ceiling and not respond to any questions. During a neurology exam, they were yelling his name, pinching him, hitting him on the chest trying to get him to answer a question. Then out of nowhere, he'll answer a question or make a statement and he's back for just a couple minutes but then he's gone again. He has made several jokes over the past day or two but he really doesn't have a conversation. Even when he's off in his own world, the doctors have asked him to squeeze their hands and he'll do that.

At this point, they're testing for several things. He did have an MRI this morning, which we haven't gotten the official results but the doctor did say they look comparable to the MRI he had last Monday. Dr. Ansstas (his medical oncologist) was in this morning and said that he doesn't believe whatever is going on right now is caused from the necrosis that he's had. With how well he's been doing and no real change on the MRI, it doesn't make sense for that to be the cause. If there's anything different in the official results, Dr. Ansstas will let us know.

They put in a PIC line this morning, which is a different type of IV. It goes from just above the elbow into the chest area. They'll be able to draw blood from it, give him all his meds, and any contrast he may need for future testing. They've switched all his medication to IV meds because the nurse said he's not able to swallow pills right now. They've got him on fluids right now, and have given him several different vitamins and extra nutrition. They have increased his anti seizure medication and started antibiotics as a precaution until they figure out what's going on.

Right now he's in an isolation room, which means everyone else needs to wear a gown, mask, and gloves while in his room. They're concerned about infection or possible meningitis and will do a spinal tap at some point to rule those out. They're also starting another EEG, this time with video and audio recording, which will last approximately 24 hours. He's going to have many wires glued to his head and then they're going to put a head wrap on to maintain the location of the wires. Once they have all the recordings, they'll match up his brain activity with whatever is going on physically and try to find some correlation. With him having the 24 hour EEG, we have no ETA on when he'll have the spinal tap done.

He does seem to be hallucinating a little bit today, but he also hasn't slept at all since all of this started. His neurologist was going to make a note for them to give him meds to help him sleep tonight. When we got to the hospital today, I told him he needed to sleep and he said he couldn't because he needed to count the bolts. Mom and I think that he maybe thought he was at work. A few minutes after that, I asked him if he was at work and he said that "he's always working" but then he said he knew he was at Barnes St. Louis. I also asked him if he knew who I was, and he did.

At this point, Mom and I have decided that we don't want visitors coming to the hospital due to the fact that he's in isolation but once he is out, visitors will be welcome. We have no idea when he'll be home but obviously visitors will be welcomed then too. We do have decent cell service in this part of the hospital but if you text us and we don't respond, send us a Facebook message. There is Wi-Fi in the entire hospital and sometimes that's the best way to get a hold of us. We appreciate all the thoughts and prayers from everyone and I will continue to update the blog as we learn more!

MRI Results-Mid August

First off, I want to say THANK YOU to all that have donated to Pedal the Cause.. I've hit my minimum fundraising but I would love to go above and beyond! Training has been going really well and I'm contemplating increasing my mileage but we shall see! The link is below if anyone still wants to donate!

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

We had appointments with neurology and medical oncology last Wednesday, August 10th, which happened to be the one year "anniversary" of Dad's surgery! There was no major changes comparing this MRI with the last, however the second spot appears to be getting larger. Both doctors agree that it's probably necrosis, although there's no way of knowing for sure (see the previous post for more information on necrosis).

Although this part of his brain is looking a little worse, the doctors said we have to look at that as only a piece of the puzzle and not the whole puzzle. Perfusion studies (how the body delivers blood) show that there's not much blood flow to the area and Dad is doing really well clinically. Looking at all of those pieces, the doctors seem to be really pleased with how Dad is responding to treatment. We will continue the same course of treatment as long as the disease continues to respond. Our next MRI/appointment round will be in 8 weeks!

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!!!

End of January Update

Dad had an appointment with Dr. Huang today and we got some good news... From the last MRI that Dad had, it looks like the tumor has lost some of the blood flow! Hopefully this means the Disulfrum is working and slowly killing the tumor. He has also gained three pounds and hopefully he will keep that weight on and not loose any with the next round of chemo.

They decided to lower his chemo from 400 mg down to 360 mg since the last round kicked his butt so bad.

He'll have another MRI on the 23rd of February. They're trying to get his MRI schedule worked out so that he has one every two months, at the end of a chemo round. The clinical trial needs MRI's every so often and the oncologists want MRI's as well and getting them on the same schedule has been a little tricky.

Finished with Round Two of Chemo!

The second round of chemotherapy tried kicking Dad's butt a little bit. Once he finished, he was very tired and didn't want to eat much. There was a few days that he laid in bed or slept the whole day and even had to use the wheelchair to get around the house. We also cancelled physical therapy for this week because he was so tired.

He's starting to have a little more energy and appetite, he walked a few laps around the couches yesterday evening and ate a small meal of pizza and salad. Hopefully he continues to improve and his body won't have such a harsh reaction to the next round of chemo, which will start the end of January.