A site update and some good news

First, the news that I know many of you are anticipating.  Jen's latest MRI scan was stable!  The report read "Essentially stable examination.  The peripherally enhancing lesions in the left frontal and temporal lobes may be marginally improved from before.  No progressive T2/FLAIR hyperintense signal abnormality."  We are obviously happy for a stable scan, but more excited by the possibility that there may even be marginal improvement.  The reports are usually conservative in nature, but to Jen's, mine and the doctor's eyes we all saw some areas of very slight improvement.  This is especially exciting considering the low dose of chemo Jen is on.

Meanwhile, Jen's platelets will hopefully continue to do well on this low dose.  They are currently falling and are lower than they were in the previous cycle at this point, but they are still high enough to resume chemo if they do not fall much further.  If her platelets hold, Jen will be resuming chemo this Sunday.

I have updated the site as well (a little later than I had wanted to) to reflect that May is Brain Cancer Awareness Month.  Please check out the links and get informed.  More than 69,000 Americans will be diagnosed with a primary brain tumor this year.  There are more than 120 kinds of brain tumors and Glioblastoma is not only the most common (affecting 40% of those with brain cancer), it is also the most deadly.

My family has safely returned to their homes back east.  We really enjoyed having my parents and brother out for a visit.  This was the first time Jen or I had seen them since this whole journey began.

 

Cycle 5 of chemo completed

Jen was finally able to begin a chemo cycle on schedule.  She is on a very low dose, but it seems as if we have finally zeroed in on a dose that her platelets will tolerate.  She finished her 5th cycle last Thursday.  Even though this dose was very low, Jen had a pretty rough go with it this last week in terms of physically tolerating the chemo (We won't know how her platelets have responded for about another week or two).  She slept a lot and had a lot of nausea and stomach discomfort.  Today, is the first day that she seems to be feeling better.  I have included an updated graph to reflect her chemo cycles through the present.  You can see that her 4th cycle has definitely had a better response curve.  Her 5th cycle that she just completed was at the same dosing as her 4th and will hopefully continue to be tolerated.

The numbers on the left of the graph are Jen's platelet levels

 

 



Jen's next MRI will be May 11th.  In the meantime, my parents and brother are coming to LA to visit for about a week.  We both very much look forward to seeing and spending time with them.  Will keep you updated.

Jen and Randy take in a concert.

One of the things that Jen and I have always enjoyed doing together is to see live music.  About 3 weeks ago, Jen decided she wanted to see the band The Swans when they came to LA.  We weren't sure how it would go - the band is not for the timid, but we decided to give it a try.  We went last night.  The venue was terrific and even though it was a standing only show, they allowed us to enter the venue before the crowd and arranged seating for us.  Even with a seat available, once the headliner came on Jen had trouble staying in it.  She was on her feet dancing and grooving for half the show.  She and I both thought the show was incredible and Jen said she felt the music was both cathartic and healing.  They say music is good for the soul, hopefully it's good for healing cancer as well.  Certainly the positive emotions music can bring can only help.

Another Stable Scan!

Jen's latest MRI was again stable.  There is the possibility of a very small increase in one of her tumors (this is the one that Cedars has been the most concerned with).  We are obviously keeping a close eye on it.  This is the largest of her tumors and is also the one that is the most inoperable.  It is in the area of the brain responsible for language.  In any case the growth is small and the doctor at UCLA believes we should stay the course and undertake another cycle of the chemo.  We will be going to Cedars on Thursday for our consultation there.  We will have to see if they concur.  At least one of the other tumors does appear to have shown signs of shrinkage and the edema has continued to show signs of decreasing as well.

Jen's doctor at UCLA is pleased and has said that considering the number and size of her tumors as well as the fact that she is on a very low dose of chemo which she also hasn't even been able to take on the standard timeline due to her platelet levels, he is surprised that she has done as well as she has.  He has confided that they were very concerned early on.  We are not sure what has contributed, whether it is residual from the radiation, the chemo (even at the low dose), her Ketogenic diet, or perhaps even the Novocure that she has now been on for 3 1/2 months.  Perhaps it is a combination of several factors.  We are obviously very happy at the latest scan, but do have some concerns about the possibly growing tumor.  For those who are unaware, glioblastoma is one of the most aggressive forms of cancer there is.  It can double in size in just 2 weeks.  Her next scan should be in about 4 weeks provided she begins her next cycle of chemo on time.

Jen's platelets have fallen again, but they are still above the threshold for resuming the chemo and they are actually a little bit higher than they were at this point in the previous cycle.  We will have another blood draw on Friday to see whether or not Jen can begin her next cycle on Sunday.

Jen's latest blood draw & a trip to Descanso Gardens

Jen had her latest blood draw today.  Her platelets are up and looking good for the moment.  Because, we only get a level once a week it is impossible to know whether they are still climbing or falling though.  Her level at this point is now equal to what it was at this same point on her previous cycle - and she began this latest cycle with a lower starting platelet level.  Next week is when she traditionally has started to notice the drops from the chemo.  We get another draw next Monday as well as Jen's next MRI.  We are praying for a good scan.

Last week, Jen and I took advantage of the beautiful weather and went to Descanso Gardens (just north of LA) for the afternoon.  The day could not have been any better for it.  It was beautiful and also was good for Jen's Physical Therapy with all the walking.  We also took the opportunity on many occasions to just find a quiet spot to sit and just listen and meditate.  Jen absolutely loved the day.

Jen's Work Party

Jen's work team from Deutsch came over about a week ago for a party.  Jen really enjoyed seeing everyone and getting a chance to catch up.  She said that it was a very uplifting experience for her.  We both loved having everyone in our home and hope to be able to see everyone again soon.  Most of these photos were taken early on and we missed getting photos of those that arrived later and stayed for the fire.  If anyone has any other photos, send them my way and I will include them.

Enjoying the music

Jen loves this rock formation next to our house.  What do you see?

Cancer in the media

Everywhere you turn there seems to be some new coverage about the latest breakthroughs in cancer research.  Although much is still in early clinicals, there is a lot of hope and promise out there.

Something that many people don't realize is that each clinical, and there are hundreds out there (for Glioblastoma alone), has it's own eligibility requirements.  They may specify whether they are upfront or recurrent.  They can create further exclusions based on what drug therapies or treatment options have already been pursued.  Many will create additional exclusions based on whether surgical recession has been performed as well as the number and sizes of any tumors.  Many further go on to exclude/include solely on the basis of a specific genetic marker that may or may not be present.

I know many of you have already seen the 60 Minutes profile that specifically looked at a treatment taking place at Duke University for Glioblastoma.  At the moment Jen is ineligible for their trial as she is not yet recurrent (this is a good thing).  The full story and additional information can be found using the link below.

http://www.cbsnews.com/news/polio-cancer-treatment-duke-university-60-minutes-scott-pelley/


There is also the new Ken Burns film "Cancer: The Emperor of all Maladies" - check your local PBS listings.  I know in LA they are airing the complete program again on Sat 4/4.  This program looks at the history of cancer as well as exploring some of the newer treatments that are being explored.

http://cancerfilms.org/

Jen's blood draw on 4/1/15

Jen's latest blood draw shows a continued slow increase in her platelet levels.  Her levels are still lower than they have been at this point following any of her previous cycles.  Hopefully they will continue to rise and her last dose won't lower her levels too much.  It usually takes about 2-3 weeks following a chemo cycle before we notice a decline.  She goes back for her next blood draw next week.

Gliobastoma Cover story for Time Magazine

This week's Time magazine features a story of 2 women battling Glioblastoma.  It talks about the shift in cancer treatment that is just beginning to take place - using genetics to treat cancer very specifically.  The newest thinking is that cancers may share more in common with each other based on genetic markers as opposed to the cancer type.  It may in fact be that a breast cancer might have more in common with a brain cancer and skin cancer that share the same markers than it would with another breast cancer with differing markers.  This is beginning to change the way cancer is approached.  We may no longer think of cancer by what area of the body it affects, but by how it is composed.  This was also discussed in the Vice program I previously linked to.

The other aspect that this article raises is the inequity of care based largely on geography.  Most hospitals do not have access to this sort of genetic testing or clinical trials that are based on this info.  We are at least fortunate enough to live in Los Angeles where we have access to some of the best hospitals available.  We have already begun several genetic tests on Jen's cancer, so that if she does become recurrent, we will at least be able to take advantage of this information.