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.