Tuesday, October 27, 2015

October 26th - 14 Months

Today marked Jen's 14 month anniversary since diagnosis.  This is a sobering milestone of sorts.  It marks the median survival rate of patients diagnosed with glioblastoma.  This means that half the people diagnosed don't survive to see 14 months.  We are grateful to be on the positive side of this curve.  The statistics are grim - of those who make it to 14 months, only 40% of those will go on to see a 2 year survival.  Again, we are hoping to be fortunate enough to be among the 40%.  Jen has become fond of quoting Han Solo from The Empire Strikes Back - "Never tell me the odds."  She continues to bravely face this thing and if anyone can beat this, I know that she will.  There is new and promising research that goes on every day.  If anyone caught Joe Biden's interview on 60 minutes this last week, he talked about the death of his son Beau from brain cancer.  He also talked about how he and the President have discussed pushing an initiative towards curing cancer much like Kennedy did to put a man on the moon by the end of the decade.  I hope they have the tenacity to follow through on this issue and that our current political quagmire doesn't impede any efforts to do so.  Just imagine where me might be today if we had invested even a fraction of the money that we have spent on the wars of the last 2 decades.  Apologies for getting a little political, but it is hard to fathom that this could not be an issue that all parties could agree upon.  One can hope.

Jen's next scan is November 4th.  We welcome your thoughts and prayers.

On Sunday, November 8th there is a race/walk for Brain Cancer taking place in the LA area.  It is at Dockweiler State Beach in Playa del Rey.  If all goes well with Jen's next scan she will unfortunately be 5 days into her 12th chemo cycle and most likely be unable to attend.  I haven't planned for it yet for myself as she often needs help at home that far into her chemo, but if she is feeling okay I will probably try and make it out there.  If anyone else in the LA area is interested please check out the following link.


On a lighter note, Jen and I went to The Rise of the Jack o' Lanterns at Descanso Gardens this past weekend.  Halloween has always been one of Jen's favorite holidays and she really enjoyed being able to see this.  The pictures don't really convey the intricacy of all the carvings the way they look in person, but everything you see is made of hand carved and or painted pumpkins.



It's hard to get the scale of this, but this tree had over 1,000 hand carved
pumpkins strung about it like Christmas lights.

There were many larger displays like this one each composed of many, many

A sea of jellyfish - part of an undersea area

Saturday, October 10, 2015

Another Stable Scan ... mostly

Jen had her most recent scan this last week.  Although the radiologist read the scan as stable, Jen's oncologist does see some increase in the contrasting region of one of the tumors.  This is a very small increase, but worth noting and tracking.  An MRI is not a perfect view inside the brain and this could be the result of many things including scarring, a greater amount of contrasting fluid that may have been used for this test, or it could mean slight tumor growth.  In any case, the amount is minimal and her doctor does not feel we should change course.  The possible growth is small enough that it would not be labeled as recurrent in any case so there are really no other options to even consider at this stage.  We may know more next scan or this may be the kind of thing that we won't have a firm idea of what is going on until after several more scans.  We also followed up with Cedars Sinai this week and their conclusion is the same. 

Jen began her 11th cycle of chemo on Wednesday night.  If the next scan is good in 4 weeks she will then begin her 12th cycle of chemo at that time.  This will most likely be her final round of chemo...for now.  Much of this is not an exact science.  Why only 12 cycles?  Why not 13 or 18 or 24?  There are no definite answers other than this is what is done.  Some patients have had more cycles of chemo, but there is no data showing any benefit to doing this.  Meanwhile, the chemo itself can have long term harmful side effects like leukemia - so staying on it indefinitely is not really an option either.  Both UCLA and Cedars feel like Jen should stop after 12 and then we will continue to follow up with scans.  It is possible that she may resume chemo at some date in the future, but this will depend on her future progress.

Novocure, the device that Jen wears on her head was just approved by the FDA this week as a treatment for initial diagnosis of glioblastoma.  Previously, it was only approved for recurrent use.  Jen, however has been on the device since the end of last December and began using the device shortly following her initial diagnosis.  We are fortunate that Jen was able to do this, since it is only now approved for this use.  This would not have happened if we didn't push for using the device.  One really does need to advocate and fight for one's own healthcare.