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.
