MGMT, not just a great band


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 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.


‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor

Fred Hutch scientists report early success with novel gene therapy to attack cancer while protecting healthy cells.

via ‘Breakthrough’ treatment boosts survival in battle with deadly brain tumor.


A lot to contemplate.  Evan and I met in Washington and are familiar with the area.  There are family and friends there.  UW is ranked #1 cancer hospital west of the Rockies and number seven in the country.  Ranked behind the likes of MD Anderson and Johns Hopkins.

On Monday we are going to take a reduced list, derived from the top tier hospitals we received from the ABTA (listed on my last post) and ask Evan’s doctors which they would recommend.  One step at a time we will get there.


Some information gained from today’s limited amount of research is about to come your way.  It is limited because I have a one and a half year old daughter, projectile vomiting husband and stressed out mother-in-law. 

I was able to make a few phone calls for information on sperm banking.  My sister did some research and found this place that isn’t too far away: Duke Fertility Center.  It seems like a sample is $287 and it’s $200 per year to store it.  Patients starting chemotherapy are given appointments within two days of requesting one.  That is hopeful since Evan’s doctors want him to start chemo as soon as possible, which is one month after his surgery…which is August 10th.  So I am hopeful that it won’t take long to get this process going, but it will go no where without the funds.  I also made a call to Fertility Hope but it seems that their spokespeople are out for training.  Nonetheless, voicemail left and contact will occur within one business day.  My last call was UNC Fertility where we had been recommended to go since Ev is already a patient with UNC.  I am being emailed information and will get back to you. 

Also, wanted to throw out this website that I think is pretty great and will explore more later.  I have been thinking a lot about medical marijuana.  I am personally not a smoker, but I can’t help and think what if strains with high concentrates of CBD could help with Evan’s tumors.  I don’t want something to happen to him and wonder what if we would have moved and tried more things than “just” chemo.  Leafly allows users to input multiple symptoms or conditions and find strains designed to help them specifically.  Something to explore for those of you out there that are interested in natural help for illnesses. 

It’s time for an ophthalmology appointment.  I will surely investigate more while we wait…and I suggest you do the same.