Thursday, July 7, 2016

Another Stable Scan!!!

Jen's scan from earlier today was again stable!  This marks 22 and 1/2 months since diagnosis.

I know it is easy to feel lulled into complacency with Jen's continual stable scans.  The reality is she is doing extremely well considering that she is multi focal, inoperable, IDH1 negative (a type of mutation in glioblastoma with a much more positive outcome), and was unable to tolerate the standard dose of chemo used to treat her cancer.  On the plus side though, Jen is methylated (a predictor for better outcomes with glioblastoma), she is under 50, has a positive attitude and she is a fighter surrounded by people who love her.  She is also extremely disciplined with her diet regimen and is also willing to use the Optune (arrays on her head) which a lot of patients have difficulty adjusting to.

Jen's next scan is scheduled for August 25.  At 7 weeks out this will be her longest period between MRIs. It will also be the day before her 2 year anniversary since diagnosis.  Keep the prayers and well wishes flowing!  Thank you!

Tuesday, July 5, 2016

Update and a few pictures

First the good news - Jen has not had any further seizures since the last one in the end of May.  We will be seeing a seizure specialist at UCLA in the next couple of weeks.  If she continues to be seizure free we will resist any increases to her medication, but it will be good to have a plan if she has any further seizures in the near future.  On Thursday of this week, Jen will be having her next MRI.  I will post the results as soon as we are able.  As always please keep Jen in your thoughts and prayers as we continue to hope for good results.  We also have an appointment coming up in the next few weeks with Jen's dietician and nutritionist at UCLA to touch base regarding Jen's Ketogenic diet.

Jen and I have also found a great Brain Tumor Support Group for both patients & caregivers.  This one meets in Santa Monica and unlike the earlier one I attended that I mentioned on this blog previously, this one has been a very positive experience.  We have gotten to know some great people who are on a similar journey.  The meetings give everyone a chance to talk about issues with others who have a definite understanding of the challenges that face someone with brain cancer.  This group also has been great for discussions on treatment options and the sharing of info.

It has been a busy month.  We saw Paul Simon at the Hollywood Bowl, went wine tasting with several friends, went to see fireworks on the 4th, and even managed to get in a beach day.  We had a friend from out of town, Kristina and her son Luke, stay with us for a few days as well.  It was great seeing them and spending time doing a few LA things together.

The last time Jen was at Vasquez she held her cane above her head.  Now - No cane.

Jen with Kristina and Luke

Many people have indicated that they were having trouble finding where to subscribe by email to this blog.  I have revised the layout a little and made the subscribe by email a little more prominent.  It is directly below Jen's picture on the right hand side.  If you do subscribe you will be notified by email when there has been an update to the blog.

The medical device that Jen has been using for the last year and a half - Optune (the arrays she wears on her head) is not presently covered by Medicare.  Almost all of the major insurance companies now cover this life saving device, but not Medicare.  Come this January, Jen will be forced to go on Medicare and we do worry about what this means for her.  There is a petition that you can fill out to encourage Medicare to cover this device.  Please take a moment to fill it out.  Although not a cure, it could help to extend someone's life.  I have include the link below: