As of today, Dad is in the middle of week two of chemotherapy and radiation. He had an appointment with the radiation oncologist on Monday and they decided to temporarily increase his steroid dosage. He's been having a harder time controlling his left foot and his speech was starting to slur a little bit more, and in the past two days of taking the increased dosage, Mom has noticed some improvements with his speech. He also had an MRI yesterday, just to double check on the tumor and make sure that it was not causing his foot to get worse. We got those results today, and while the tumor has grown, it is not the sole reason he's having trouble walking. It's most likely a combination of the tumor growing, the surgery, the radiation, and then possibly a reaction from the radiation.
He's still trying to get to therapy a couple days a week, but with doctors appointments, radiation, and drive time, there's not always enough hours in the day. However, Mom and Dad have been doing the exercises at home and they just got a stationary bike for him to use.
The Family
07/26/2015
Wednesday, September 23, 2015
Friday, September 18, 2015
Week One, Check!
Just a quick update- Dad has completed the first week of radiation and chemotherapy. He has been feeling fine, the chemotherapy hasn't made him sick and his appetite has been normal. He's having a little more trouble getting around, however he only had physical therapy on Monday and today instead of the normal three days a week. Radiation had to squeeze him in whenever they had an opening and it conflicted with physical therapy so we had to cancel one appointment. The brain tissue could also be swelling from radiation and that could affect his able to move and control his left side.
He's been using a wheelchair to get from the car to radiation, just because it's such a far walk from the car, through the hospital, and to the radiation office. Other than that he's been using a cane, partially to give him some extra balance and partially to help him practice for if his left leg becomes worse. He's still working hard at therapy and is determined to get more strength and mobility back!
He's been using a wheelchair to get from the car to radiation, just because it's such a far walk from the car, through the hospital, and to the radiation office. Other than that he's been using a cane, partially to give him some extra balance and partially to help him practice for if his left leg becomes worse. He's still working hard at therapy and is determined to get more strength and mobility back!
Friday, September 11, 2015
We're Starting Radiation and Chemo!
We finally heard back from the doctors, Dad will start radiation and chemotherapy on Tuesday, September 15, 2015. They've decided to do all of his treatments at Big Barnes in St. Louis because Dr. Ansstas, one of Dad's oncologists, will be able to monitor him much closer than he would if he was getting treatments at the West County Center. They'll be able to do MRI's as needed as well as office visits.
One of the reasons they want to be able to monitor him so closely is because the MRI that was done this past Monday shows that the tumor has grown since surgery. We're not sure exactly how much it's grown, but it is large enough now that he does not qualify for the radiation clinical trial either. One of the doctors mentioned a trial that would start after the first round of chemo/radiation, however we don't have any information on it right now.
One of the reasons they want to be able to monitor him so closely is because the MRI that was done this past Monday shows that the tumor has grown since surgery. We're not sure exactly how much it's grown, but it is large enough now that he does not qualify for the radiation clinical trial either. One of the doctors mentioned a trial that would start after the first round of chemo/radiation, however we don't have any information on it right now.
Tuesday, September 8, 2015
More Appointments
Dad had all his appointments this morning which led to a very busy morning. He was fitted for the radiation mask and this pillow that will sit underneath his head while the radiation is given. We still don't have a date set for when radiation will start, we'll hopefully know within a week or so. Dad had another MRI and CT scan done this morning and the doctors will want to look at those results to come up with a game plan for radiation.
We were able to get the first 30 days of Dad's chemotherapy, insurance will only approve so much at a time so we have to wait for them to clear the last two-ish weeks of medication before we will be able to pick it up. But now he is ready to start chemo whenever he starts radiation.
The last time we were at the doctors, Dad agreed to participate in a cognitive study and he did the first round today. This involved remembering a long list of words and having to repeat the words back; word association in which he was given a letter and then had to come up with as many words as he could that started with that letter; and dot to dots with just letters, just numbers, and then letters to numbers such as 1-A-2-B-3-C, etc. He'll do these tests again once radiation and chemo start and then again when they're over. The nurse said Dad did really well and Dad's response to that was "Yeah, and then once I leave, you'll laugh about how horrible I did!"
We were able to get the first 30 days of Dad's chemotherapy, insurance will only approve so much at a time so we have to wait for them to clear the last two-ish weeks of medication before we will be able to pick it up. But now he is ready to start chemo whenever he starts radiation.
The last time we were at the doctors, Dad agreed to participate in a cognitive study and he did the first round today. This involved remembering a long list of words and having to repeat the words back; word association in which he was given a letter and then had to come up with as many words as he could that started with that letter; and dot to dots with just letters, just numbers, and then letters to numbers such as 1-A-2-B-3-C, etc. He'll do these tests again once radiation and chemo start and then again when they're over. The nurse said Dad did really well and Dad's response to that was "Yeah, and then once I leave, you'll laugh about how horrible I did!"
Monday, September 7, 2015
A HUGE THANK YOU, Minor Update
On behalf of the whole family, we cannot thank our friends and family enough for all the support and encouragement that we have received. Our situation is less than ideal to say the very least, but our support system has helped so much. Meals have been a huge help to Mom and Dad and every time I'm over at their house, the mantel is covered with cards. The other day, I was able to put all the cards into books that now sit out in the living room table. The covers were made from balloons that Dad received the day he came home from the hospital. Visitors are still welcomed, it helps pass the time and break up the day a little bit, plus I think Dad has enjoyed seeing people he doesn't normally see on a regular basis. Huge thank you to all of those who have stopped by to visit, brought meals or snack, have cut the grass, sent cards and prayers, and anything else I may have forgotten!!!
Dad heard back from the doctor, it turns out he is not eligible for the chemotherapy clinical trial. He still will need to decide if he wants to participate in the radiation clinical trial or not. He goes tomorrow morning to have the radiation mask made, pick up his chemotherapy medication, and I'm sure there will be more paperwork and tests that have to be done. We still don't have a start date for anything, hopefully will know more by the end of all the appointments tomorrow.
He's still doing really well, no pain and no seizures. He's moving around pretty well as long as he stays moving, when he sits around too much his balance seems to get a little off. Strength is slowly coming back on the left side since he's been doing physical therapy, although I'm sure it's not nearly as fast as Dad would like it to be!
Dad heard back from the doctor, it turns out he is not eligible for the chemotherapy clinical trial. He still will need to decide if he wants to participate in the radiation clinical trial or not. He goes tomorrow morning to have the radiation mask made, pick up his chemotherapy medication, and I'm sure there will be more paperwork and tests that have to be done. We still don't have a start date for anything, hopefully will know more by the end of all the appointments tomorrow.
He's still doing really well, no pain and no seizures. He's moving around pretty well as long as he stays moving, when he sits around too much his balance seems to get a little off. Strength is slowly coming back on the left side since he's been doing physical therapy, although I'm sure it's not nearly as fast as Dad would like it to be!
Thursday, August 27, 2015
Oncology Appointments and Physical Therapy
Dad had the appointments with the two separate oncologists today. It ended up being a longer day than we thought it would be because the first doctor "was stuck in a meeting" and was running almost two hours behind.
The first meeting was with the radiation oncologist whose name I cannot think of right now. None of us were familiar with the treatment so the doctor explained it to us. The way radiation works is like a spotlight on an actor on a stage. They will put Dad in a custom mask to prevent his head from moving and the radiation will target the remaining cancer and tumor cells. He will go for treatments five days a week for six weeks and treatments will be at Big Barnes or in West County, it will just depend on what happens with his clinical trials. They won't start radiation right away, they like to wait at least 4-8 weeks post surgery to begin and right now we are only 17 days post surgery. There will be another CT Scan and an MRI done to give them that "road map" to where they need to target the radiation, as well as making the mask. There are possible side effects including headaches, swelling of the brain, short term memory loss, temporary paralysis on the left side, hair loss at the radiation site, and Dad might want to sleep more. Radiation will probably aggravate the brain tissue again which is what would cause some of these side effects. How much physical therapy he does will depend on how he is feeling. The radiation doctor said he has no problem with him doing physical therapy, however usually therapists don't allow radiation/chemo patients to do very much therapy just because they are more tired that normal. For now though, Dad will do as much physical therapy as he can.
The clinical trial that this doctor told us about is one that tests a different type of radiation. The "standard care" with radiation is a photon therapy, as explained above. This clinical trial tests a proton therapy which gives an even more direct type of radiation than the standard care. I know there is more to it medically but I haven't read all the paperwork yet so I don't have any more details. If Dad decides to do this trial, he is randomly selected to be in either the photon (standard) or proton (experimental) group. We do not get a say in which group he is in, but this is not a blind study so once his group is selected, we will know which one he is doing. This study will be done at Big Barnes and since they are the only hospital with the proton machine within a 500 mile radius, it cannot be done anywhere else. We are almost positive that he will qualify for this trial, however there is a central pathologist that will conduct their own tests to confirm it is a grade four Glioblastoma tumor and also provide consistency within the experiment.
The second doctor we met with was the medical and chemotherapy oncologist. This doctor also began the appointment by explaining the chemotherapy treatment. The day that radiation starts will be the first day of chemotherapy. Chemotherapy will be a pill that he takes everyday in the morning for six weeks, which is the same length of radiation. After the first six weeks, he will take a break for four weeks to rest and recover. When that four weeks is up, he will do 6-12 rounds of a 28 day cycle with a stronger dose. The first five days of the 28 day cycle, he will have the medicine to take and then for the rest of the 23 days, he doesn't take anything. This cycle repeats six to twelve times, depending on how he's responding to it. They're anticipating on him having minimal side effects, especially with Dad being so young and in otherwise good health. There might be some nausea, which he will have medication to help prevent that, we will also have to monitor him to make sure that he doesn't run a fever. If he starts running a fever, he would most likely have to go to the emergency room for IV antibiotics because the chemotherapy can cause his white blood count to drop which makes him more susceptible to infections and infections at that point could be very dangerous for him. He will have blood drawn weekly to monitor his white cell counts. Physical therapy would also depend on how he feels, but the doctor did say that exercise would give him more energy.
To explain how the chemotherapy clinical trial would work, you have to understand a little bit about chemotherapy and the science behind it. When someone is on chemotherapy, that medicine attacks the DNA of the cancer cells so the cancerous cell cannot divide and multiple. However, the body naturally makes an enzyme called MGMT and that enzyme makes it more difficult for the chemotherapy to destroy the DNA of the cells it needs to. In some people, the MGMT enzyme is active and in some people, it is not. If the MGMT marker is not active, it is easier for the chemotherapy to get rid of the DNA. In this clinical trial, Dad would take an additional medication that would work alongside the chemotherapy to kill the DNA. In order to qualify for this trial, his MGMT has to be non-active which happens in about 40% of people. Pathology ran this test after surgery, however it takes a while for the results to come back but we should be getting them any day now. If this test comes back and he would qualify for this trial, he would have to chose between this trial and the radiation one, he cannot participate in both trials. This trial would not begin in the first four weeks of chemotherapy, it would start once he begins the 28 day cycles. He would have medication to take the first seven days of the cycle and then not take anything for the remaining 21 days.
Both of the trials take weeks to get all the paperwork and qualifying tests done, so Dad has signed all the paperwork for both trials just to get things moving. Once we know if he qualifies for the MGMT study, he will have to continue with one study and withdraw from the other study. Neither study is contractually binding and he can withdraw from either study at any time. As far as I know, we are not leaning towards one trial over the other, we are still doing our research and honestly, still processing everything. It was information overload yesterday, on top of being a long day.
Dad started physical therapy last week and so far is doing really well! They have him working on different exercises to help with balance, walking, and regaining strength in his left arm and hand. I can already tell a difference, yesterday he had the most control and strength on the left side that I've seen since his surgery.
The first meeting was with the radiation oncologist whose name I cannot think of right now. None of us were familiar with the treatment so the doctor explained it to us. The way radiation works is like a spotlight on an actor on a stage. They will put Dad in a custom mask to prevent his head from moving and the radiation will target the remaining cancer and tumor cells. He will go for treatments five days a week for six weeks and treatments will be at Big Barnes or in West County, it will just depend on what happens with his clinical trials. They won't start radiation right away, they like to wait at least 4-8 weeks post surgery to begin and right now we are only 17 days post surgery. There will be another CT Scan and an MRI done to give them that "road map" to where they need to target the radiation, as well as making the mask. There are possible side effects including headaches, swelling of the brain, short term memory loss, temporary paralysis on the left side, hair loss at the radiation site, and Dad might want to sleep more. Radiation will probably aggravate the brain tissue again which is what would cause some of these side effects. How much physical therapy he does will depend on how he is feeling. The radiation doctor said he has no problem with him doing physical therapy, however usually therapists don't allow radiation/chemo patients to do very much therapy just because they are more tired that normal. For now though, Dad will do as much physical therapy as he can.
The clinical trial that this doctor told us about is one that tests a different type of radiation. The "standard care" with radiation is a photon therapy, as explained above. This clinical trial tests a proton therapy which gives an even more direct type of radiation than the standard care. I know there is more to it medically but I haven't read all the paperwork yet so I don't have any more details. If Dad decides to do this trial, he is randomly selected to be in either the photon (standard) or proton (experimental) group. We do not get a say in which group he is in, but this is not a blind study so once his group is selected, we will know which one he is doing. This study will be done at Big Barnes and since they are the only hospital with the proton machine within a 500 mile radius, it cannot be done anywhere else. We are almost positive that he will qualify for this trial, however there is a central pathologist that will conduct their own tests to confirm it is a grade four Glioblastoma tumor and also provide consistency within the experiment.
The second doctor we met with was the medical and chemotherapy oncologist. This doctor also began the appointment by explaining the chemotherapy treatment. The day that radiation starts will be the first day of chemotherapy. Chemotherapy will be a pill that he takes everyday in the morning for six weeks, which is the same length of radiation. After the first six weeks, he will take a break for four weeks to rest and recover. When that four weeks is up, he will do 6-12 rounds of a 28 day cycle with a stronger dose. The first five days of the 28 day cycle, he will have the medicine to take and then for the rest of the 23 days, he doesn't take anything. This cycle repeats six to twelve times, depending on how he's responding to it. They're anticipating on him having minimal side effects, especially with Dad being so young and in otherwise good health. There might be some nausea, which he will have medication to help prevent that, we will also have to monitor him to make sure that he doesn't run a fever. If he starts running a fever, he would most likely have to go to the emergency room for IV antibiotics because the chemotherapy can cause his white blood count to drop which makes him more susceptible to infections and infections at that point could be very dangerous for him. He will have blood drawn weekly to monitor his white cell counts. Physical therapy would also depend on how he feels, but the doctor did say that exercise would give him more energy.
To explain how the chemotherapy clinical trial would work, you have to understand a little bit about chemotherapy and the science behind it. When someone is on chemotherapy, that medicine attacks the DNA of the cancer cells so the cancerous cell cannot divide and multiple. However, the body naturally makes an enzyme called MGMT and that enzyme makes it more difficult for the chemotherapy to destroy the DNA of the cells it needs to. In some people, the MGMT enzyme is active and in some people, it is not. If the MGMT marker is not active, it is easier for the chemotherapy to get rid of the DNA. In this clinical trial, Dad would take an additional medication that would work alongside the chemotherapy to kill the DNA. In order to qualify for this trial, his MGMT has to be non-active which happens in about 40% of people. Pathology ran this test after surgery, however it takes a while for the results to come back but we should be getting them any day now. If this test comes back and he would qualify for this trial, he would have to chose between this trial and the radiation one, he cannot participate in both trials. This trial would not begin in the first four weeks of chemotherapy, it would start once he begins the 28 day cycles. He would have medication to take the first seven days of the cycle and then not take anything for the remaining 21 days.
Both of the trials take weeks to get all the paperwork and qualifying tests done, so Dad has signed all the paperwork for both trials just to get things moving. Once we know if he qualifies for the MGMT study, he will have to continue with one study and withdraw from the other study. Neither study is contractually binding and he can withdraw from either study at any time. As far as I know, we are not leaning towards one trial over the other, we are still doing our research and honestly, still processing everything. It was information overload yesterday, on top of being a long day.
Dad started physical therapy last week and so far is doing really well! They have him working on different exercises to help with balance, walking, and regaining strength in his left arm and hand. I can already tell a difference, yesterday he had the most control and strength on the left side that I've seen since his surgery.
Thursday, August 20, 2015
The Pathology Results
Dad has his follow up appointment with Dr. Chicoine yesterday. The purpose of this appointment was to find out the results from the biopsy and to figure out how to proceed from here.
The biopsy indicated that the tumor was cancerous, Stage Four, and it is a Glioblastoma tumor like they originally had thought. I still refuse to Google anything but from what the doctor said, it's a very stubborn type of tumor and will more than likely come back, even with treatments. The good news is, both Dad and the doctor are prepared to beat it, and there has been no mention of "only ___ months/years" or anything like that.
Dad starts physical and occupational therapy tomorrow and will continue that for a while. We don't know yet how long he'll have to go for or how many days a week. Radiation will start somewhere around the end of August or the beginning of September, they usually wait three to four weeks after surgery to begin. Radiation will be five days a week for six weeks and chemotherapy will be done in a pill form. They are considering the pill "Temodar" but ultimately it will be up to the oncologists. Dad will have two different oncologists, one is a medical oncologist that handles the chemotherapy side of things and the other is a radiation oncologist that will over see the radiation. Dad will have appointment(s) with both of them before treatments start.
It is also looking like Dad will possibly be a good candidate for clinical trials, however we don't know much more other than that.
Keep the prayers coming.
The biopsy indicated that the tumor was cancerous, Stage Four, and it is a Glioblastoma tumor like they originally had thought. I still refuse to Google anything but from what the doctor said, it's a very stubborn type of tumor and will more than likely come back, even with treatments. The good news is, both Dad and the doctor are prepared to beat it, and there has been no mention of "only ___ months/years" or anything like that.
Dad starts physical and occupational therapy tomorrow and will continue that for a while. We don't know yet how long he'll have to go for or how many days a week. Radiation will start somewhere around the end of August or the beginning of September, they usually wait three to four weeks after surgery to begin. Radiation will be five days a week for six weeks and chemotherapy will be done in a pill form. They are considering the pill "Temodar" but ultimately it will be up to the oncologists. Dad will have two different oncologists, one is a medical oncologist that handles the chemotherapy side of things and the other is a radiation oncologist that will over see the radiation. Dad will have appointment(s) with both of them before treatments start.
It is also looking like Dad will possibly be a good candidate for clinical trials, however we don't know much more other than that.
Keep the prayers coming.
Dad cleaning the floors this morning =)
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