Five days of chemo down. Cycle one is under way, not to be completed officially until the 28th day of the cycle. But, nonetheless today is a day to celebrate because Evan is feeling better than he was the last two days and no chemo pills for 23 days. No vomiting today either, if I may add. Addi enjoyed hanging out with Ev today, but she is quite congested. I am trying not to let her slobber all over everything-especially Evan, but damned if she isn’t a daddy’s girl. I am taking notes on how the cycle plays out so we will know what to expect next cycle. I will keep you posted in case you are going through something similar or are interested in our story period. Please share our story and our fundraiser page if you have a few seconds to click the link.
Today is the day for Evan to begin chemotherapy. He will be taking a pill known as temodar for five days of a 28 day schedule. He gets blood drawn twice during this cycle and if everything looks good he will be all cleared to continue with temodar. This will be a year long process. He was able to get a patch to help with his nausea to ensure he is able to hold down his chemo.
The neuro oncologist prescribed dexamethasone in an additional effort to control vomiting and to help with his energy. This seemed to be beneficial. Yesterday Evan had an appointment but afterward we went to the store together, cooked together and he helped clean up. I know this seems mundane, but in our reality–or anyone with cancer–this is a big deal. I think everyone is wound up to see how he will respond to chemo.
One thing I discovered to ask about during my research was the MGMT gene. Apparently this gene helps tumors respond more positively to chemo, but this gene was not found in his glioblastoma. Nonetheless Evan has the IDH1 gene which generally results in a better prognosis; I will have to look more into that. Just some things to consider if you were recently diagnosed and need some things to ask about.
Right now I am on hold with medicaid trying to get some information on what we would need to do to get a second opinion that way if/when Evan decides he wants to look into another hospital I will know what needs to happen…and they don’t cover any expenses out of state so if we get a second opinion it will be out of pocket. So, please spread the link youcaring.com/evanmyrtle and if you can, please donate so we can get a second opinion and possibly move to a new hospital. Don’t get me wrong, Chapel Hill has been great, but Evan is getting the most he can at this point from them. If he doesn’t respond to temodar we will have to go somewhere else. I am trying to be proactive and get him to meet with another doctor just in case; I don’t want to wait until it is a necessity.