Yesterday early morning Dad woke up with a headache. He took some Tylenol and put an ice pack on his head and started feeling better and went back to sleep. When he woke up in the morning, he had a headache again and was vomiting. Mom got a hold of one of the oncologists who wanted him to go to the ER and get checked out. At the ER, they did a CT scan which showed more swelling on the brain compared to his last CT scan although I'm not sure which CT scan they compared it to because he hasn't had one in a long time. They decided to transport him by ambulance to Barnes downtown, mainly because all of his doctors are down here and they have a little bit better technology. Dad said the ambulance ride was TERRIBLE, 45 minutes of bouncing around with a full bladder was not his idea of a good time.
They've increased his steroids for now and he seems to be responding well to that. He's feeling much better, has not had any more headaches and his stomach has settled down. We're still in the hospital, just kind of waiting for the doctors to decide what they want to do. Dad hates hospitals and waiting so he's just ready to go home but he has a private room this time around and has been watching war movies all morning.
5:32 pm-- They finally made the decision to discharge Dad. He will stay on the increased dose of steroids until all of his doctors are able to get together and decide what the best course of action will be. They do not want him on steroids for too long, there are only three types of steroids that cross the blood-brain barrier and once he becomes immune to those steroids, there won't be any that would be beneficial. He's still feeling fine and is just ready to be back at home!
The Family
07/26/2015
Monday, December 7, 2015
Wednesday, December 2, 2015
Family Photo and Some GOOD News!
I just got off the phone with Mom, she said that her and Dad went out to Applebee's with some friends for dinner and Dad ate his entire club sandwich as well as the mashed potatoes. This is the first meal he's eaten in about a week!!! He said it actually tasted pretty good and it was nice to be able to eat like a normal person. Hopefully his appetite keeps up and he can gain a little weight.
Dad and Mom also picked up Dad's medication for the next round of chemotherapy as well as the clinical trial. His next MRI is January 11th and depending on how that MRI looks, we may or may not have an appointment with Dr. Chicoine a few days after. An appointment would mean there's something on the MRI that concerns the doctors so we're hoping for no appoinment.
Here is the picture of the whole family on Thanksgiving! Dad brought it to my attention that it was never posted, it completely slipped my mind! I love this picture, surprisingly we got such a great looking picture in just one try! This is Dad's side of the family, we're missing quite a few of the cousins and some uncles but this is everyone that was in town!! Love them so much!!
Dad and Mom also picked up Dad's medication for the next round of chemotherapy as well as the clinical trial. His next MRI is January 11th and depending on how that MRI looks, we may or may not have an appointment with Dr. Chicoine a few days after. An appointment would mean there's something on the MRI that concerns the doctors so we're hoping for no appoinment.
Here is the picture of the whole family on Thanksgiving! Dad brought it to my attention that it was never posted, it completely slipped my mind! I love this picture, surprisingly we got such a great looking picture in just one try! This is Dad's side of the family, we're missing quite a few of the cousins and some uncles but this is everyone that was in town!! Love them so much!!
Thursday, November 26, 2015
Happy Thanksgiving!!!
Happy Thanksgiving everyone!!!
So here's the update from the doctor's appointments yesterday. We met with a LOT of people, both oncologists, the neurologist's nurse, clinical study coordinator, and a nutritionist, as well as getting blood work done. All of the doctors pretty much said the same thing and while we didn't really receive any great news, we also didn't get any bad news.
Dad had another MRI on Monday the 23rd and on this MRI, the tumor appears slightly larger than it did on the MRI he had after surgery. This can still be inflammation from radiation, or what they call pseudo progression. It is very common to see these types of changes and the doctor told us not to really be concerned at this point because they can't accurately interpret the images. The further out we get from radiation, the better picture they'll be able to get of the tumor. They looked for lesions outside of the radiation field and did not see any, which is a good sign! Fully recovering from radiation is a slow process and Dad could still have side affects from it years from now. This MRI will be the new baseline and he will get MRI's every 6-8 weeks. The next one should hopefully have less inflammation and we'll be able to get a better image of what's actually going on.
Dr. Ansstas, the medical/chemotherapy oncologist will have Dad start his next round of chemotherapy next Thursday, December 3rd. He will be on the same type of chemotherapy (Temodar) but this will be double his previous dosage. This round is not everyday like before, but will be 5 days in a row and then 23 days off. Those 28 days are considered a "round" of chemotherapy and he will do at least 6 rounds.
We also found out that Dad qualifies for a clinical trial! The official title of the project is "A Pharmacodnamic Study of Proteasome Inhibition by Disulfiram in Patients with Glioblastoma". This trial uses the drug Disulfiram, which is normally used for treating alcoholism, to attempt to destroy the Glioblastoma (GBM) cells. The way Dr. Ansstas explained it is that each cell has a "garbage can" that collects all the cell waste. The Disulfiram has previously shown that it can destroy that garbage can, which will eventually kill the cell because it is so dirty. Disulfiram has been around since the 1960's and has the FDA approval for treating alcoholism. Unfortunately, they couldn't say how effective it is with GBM but it will work along with the chemotherapy and hopefully the combined efficiency will knock the rest of the tumor out. They believe he will only have minimal side effects, such as tiredness, confusion, balance, or weakness. In previous studies, all of these side effects stopped once the Disulfiram was stopped and if the symptoms become too bad, he can withdraw from the study at any time. He will start taking the Disulfiram every day, as well as a copper supplement, with the chemotherapy. The copper will bind with the Disulfiram and help it get where it needs to go.
Dad has lost a decent amount of weight, about 14 pounds in a month. They don't want him to lose any more and want him to at least maintain his current weight. We met with a nutritionist to help figure out what he needs to be eating and to try and get some ideas of things he might like. He no longer has a metal taste in his mouth but says that food just doesn't taste like it's supposed to. Mikayla made some chicken the other night that had some strong spices and he was able to eat a couple of bites and while we were at the doctors, I was eating pistachios and he found that they actually tasted pretty good. This morning my grandparents were over for breakfast and he ate bacon, scrambled eggs, hash browns, and a cinnamon roll and at Thanksgiving lunch he had a few bites of everything and asked for seconds of jello and applesauce which is the most food he's eaten in one day in weeks. The nutritionist brought him a couple bottles of different flavored Ensure drinks to try and he really like the vanilla one. Barnes provides cases of Ensure to patients at no cost, so we were able to get an entire case yesterday so hopefully this will help him maintain his weight. They also want him to continue physical therapy so he doesn't lose any more muscle mass.
As a surprise for my Dad, my cousin Jessi ordered shirts for everyone to wear for Thanksgiving. He had no idea this was planned but it was so awesome to see all of the family (at least the one's that were able to make it this year) and to see all of their support. We were able to take an extended family photo, which we haven't done in AGES and I will post it as soon as it's emailed to me. But for now, here's the ones of our family.
So here's the update from the doctor's appointments yesterday. We met with a LOT of people, both oncologists, the neurologist's nurse, clinical study coordinator, and a nutritionist, as well as getting blood work done. All of the doctors pretty much said the same thing and while we didn't really receive any great news, we also didn't get any bad news.
Dad had another MRI on Monday the 23rd and on this MRI, the tumor appears slightly larger than it did on the MRI he had after surgery. This can still be inflammation from radiation, or what they call pseudo progression. It is very common to see these types of changes and the doctor told us not to really be concerned at this point because they can't accurately interpret the images. The further out we get from radiation, the better picture they'll be able to get of the tumor. They looked for lesions outside of the radiation field and did not see any, which is a good sign! Fully recovering from radiation is a slow process and Dad could still have side affects from it years from now. This MRI will be the new baseline and he will get MRI's every 6-8 weeks. The next one should hopefully have less inflammation and we'll be able to get a better image of what's actually going on.
Dr. Ansstas, the medical/chemotherapy oncologist will have Dad start his next round of chemotherapy next Thursday, December 3rd. He will be on the same type of chemotherapy (Temodar) but this will be double his previous dosage. This round is not everyday like before, but will be 5 days in a row and then 23 days off. Those 28 days are considered a "round" of chemotherapy and he will do at least 6 rounds.
We also found out that Dad qualifies for a clinical trial! The official title of the project is "A Pharmacodnamic Study of Proteasome Inhibition by Disulfiram in Patients with Glioblastoma". This trial uses the drug Disulfiram, which is normally used for treating alcoholism, to attempt to destroy the Glioblastoma (GBM) cells. The way Dr. Ansstas explained it is that each cell has a "garbage can" that collects all the cell waste. The Disulfiram has previously shown that it can destroy that garbage can, which will eventually kill the cell because it is so dirty. Disulfiram has been around since the 1960's and has the FDA approval for treating alcoholism. Unfortunately, they couldn't say how effective it is with GBM but it will work along with the chemotherapy and hopefully the combined efficiency will knock the rest of the tumor out. They believe he will only have minimal side effects, such as tiredness, confusion, balance, or weakness. In previous studies, all of these side effects stopped once the Disulfiram was stopped and if the symptoms become too bad, he can withdraw from the study at any time. He will start taking the Disulfiram every day, as well as a copper supplement, with the chemotherapy. The copper will bind with the Disulfiram and help it get where it needs to go.
Dad has lost a decent amount of weight, about 14 pounds in a month. They don't want him to lose any more and want him to at least maintain his current weight. We met with a nutritionist to help figure out what he needs to be eating and to try and get some ideas of things he might like. He no longer has a metal taste in his mouth but says that food just doesn't taste like it's supposed to. Mikayla made some chicken the other night that had some strong spices and he was able to eat a couple of bites and while we were at the doctors, I was eating pistachios and he found that they actually tasted pretty good. This morning my grandparents were over for breakfast and he ate bacon, scrambled eggs, hash browns, and a cinnamon roll and at Thanksgiving lunch he had a few bites of everything and asked for seconds of jello and applesauce which is the most food he's eaten in one day in weeks. The nutritionist brought him a couple bottles of different flavored Ensure drinks to try and he really like the vanilla one. Barnes provides cases of Ensure to patients at no cost, so we were able to get an entire case yesterday so hopefully this will help him maintain his weight. They also want him to continue physical therapy so he doesn't lose any more muscle mass.
As a surprise for my Dad, my cousin Jessi ordered shirts for everyone to wear for Thanksgiving. He had no idea this was planned but it was so awesome to see all of the family (at least the one's that were able to make it this year) and to see all of their support. We were able to take an extended family photo, which we haven't done in AGES and I will post it as soon as it's emailed to me. But for now, here's the ones of our family.
Tuesday, November 10, 2015
No More Steroids
Dad is completely off the steroids and is starting to feel the affects of radiation and chemotherapy. He's having a hard time eating anything; food has started to have a strong metal taste or just doesn't taste good. He's found that popsicles taste the best, but has been able to eat some tomato soup and PB&J, although after a couple days, he's kind of gotten sick of them. Sweets don't really taste good anymore, he's stopped eating them for now. We're still trying to figure out exactly what he can and can't eat, Slim Fast shakes tasted good but then made his stomach upset. Peanut butter tastes alright when it's eaten with something else but tastes terrible when eaten plain. Everything tastes different for different people so it's going to be trial and error. He seemed to do better while on the steroids, but unfortunately, cannot be on them long term.
Dad is still going to physical therapy a couple of time a week. He has good days and bad days as far as mobility goes; he's supposed to work on putting his body weight on his left side when he gets up to try and strengthen the muscles. He is still getting around on his own with the use of a cane, just moves a little slower than he'd like. He's said he gets tired just walking from the couch to the bathroom.
Mom and Dad went over to the neighbor's house for a Halloween party, but had a special visit from my cousins, Anna and a Swamp Monster!!
Dad is still going to physical therapy a couple of time a week. He has good days and bad days as far as mobility goes; he's supposed to work on putting his body weight on his left side when he gets up to try and strengthen the muscles. He is still getting around on his own with the use of a cane, just moves a little slower than he'd like. He's said he gets tired just walking from the couch to the bathroom.
Mom and Dad went over to the neighbor's house for a Halloween party, but had a special visit from my cousins, Anna and a Swamp Monster!!
Friday, October 30, 2015
Radiation, check!
So life, work, and feeling a little under the weather got in the way of things and I forgot to update the blog but DAD IS DONE WITH RADIATION! His last treatment was this past Monday and in case we're not Facebook friends and you didn't see the video, I'm attempting to post it. He also had an appointment with the radiation oncologist which went well, all the weekly lab results have been looking great!
Dad now has four weeks off chemotherapy and is going to focus on getting some strength back in his left side. The other day his left hand itched so he's slowly getting some feeling back into it. He still uses the cane to get around and the wheelchair for long distances.
He has an appointment with the neurologist November 11th and then an MRI is scheduled for the Monday before Thanksgiving. The following Wednesday he has an appointment with the medical oncologist to get the results of the MRI and then will start another round of chemotherapy sometime after that.
We really appreciate everything everyone has done for us.. The prayers seem to be working, so keep them up!!!!
Dad now has four weeks off chemotherapy and is going to focus on getting some strength back in his left side. The other day his left hand itched so he's slowly getting some feeling back into it. He still uses the cane to get around and the wheelchair for long distances.
He has an appointment with the neurologist November 11th and then an MRI is scheduled for the Monday before Thanksgiving. The following Wednesday he has an appointment with the medical oncologist to get the results of the MRI and then will start another round of chemotherapy sometime after that.
We really appreciate everything everyone has done for us.. The prayers seem to be working, so keep them up!!!!
Monday, October 19, 2015
Almost Done with Radiation!
Dad had his weekly appointment with the radiation oncologist today and they cut back his steroids again so now he is only taking them once a day. Since radiation has started, he's usually lost one or two pounds from week to week and this week he maintained his weight. The doctor also thinks that the leg is getting stronger and seemed impressed with the work Dad has done so far.
His last day of radiation is Monday, the 26th, so just five more trips down to Barnes and then the daily trips will be over! He will also have an MRI sometime within 4-6 weeks after his last radiation treatment.
Last week after one of Dad's treatments, we decided to make a stop at the STL Zoo and walk around. The animals weren't super active but it was a gorgeous day! We packed a lunch and ate by the lake and I was able to get my exercise in by pushing Dad around!
His last day of radiation is Monday, the 26th, so just five more trips down to Barnes and then the daily trips will be over! He will also have an MRI sometime within 4-6 weeks after his last radiation treatment.
Last week after one of Dad's treatments, we decided to make a stop at the STL Zoo and walk around. The animals weren't super active but it was a gorgeous day! We packed a lunch and ate by the lake and I was able to get my exercise in by pushing Dad around!
Monday, October 12, 2015
Minor Progress
I haven't posted any updates in a while, mainly because there hasn't been anything to post. Dad only has ten more radiation treatments to complete-- last day is October 26th!
They have decreased his steroids and now he's only taking half of what he was previously taking. He is slowly getting control over his left arm, he can raise it above his head and the feeling is slowly coming back in his hand. Mom said they were outside earlier today and he was able to feel a bug land on his hand. They took the support brace off his ankle two days ago and has been doing great walking since then. They met with the radiation doctor today and everything is looking good, including blood work.
Dad was able to be at his best friend's wedding over the weekend, he was the best man and gave a great speech!
They have decreased his steroids and now he's only taking half of what he was previously taking. He is slowly getting control over his left arm, he can raise it above his head and the feeling is slowly coming back in his hand. Mom said they were outside earlier today and he was able to feel a bug land on his hand. They took the support brace off his ankle two days ago and has been doing great walking since then. They met with the radiation doctor today and everything is looking good, including blood work.
Dad was able to be at his best friend's wedding over the weekend, he was the best man and gave a great speech!
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