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.

Jen begins her 4th cycle of Chemo

Jen's platelet levels on Friday were finally high enough to resume chemo, but barely.  We decided to give her marrow a few more days to recover and she began her 4th cycle on Sunday night.

Our concern is that even as Jen is taking increasingly lower doses, she is having a more difficult and delayed recovery with each subsequent dose.

I have plotted out all of Jen's chemo cycles on a graph.  Note the key on the right hand side.

 

 

 

As you can see, her most recent cycle (in yellow) has taken the longest to respond and recover - even though this was at a 25% lower dose than the 2nd cycle.

Her last platelet reading was on the 43rd day following the start of the 3rd cycle and her platelet level was 102.  At this point following her second cycle, which had a significantly higher dose, her levels were around 180.

 

Her newest cycle is at an even lower dose and she is beginning this cycle with her lowest starting platelet count yet.  Hopefully her body will be able to tolerate this dosing and hopefully it will be enough to keep her cancer at bay.

 

Platelets are on the rise...slowly

Jen had a blood draw yesterday and her platelet levels are higher, but still not high enough to resume chemo.  We will do another draw on Friday.

So, Jen and I attended the Brain Tumor conference at UCLA over the weekend.  It felt a little like going back to school.  We both enjoyed it quite a bit.  It was informative, but also gave us the chance to meet others with a similar journey.  There were panels on everything from understanding the current treatments used, clinical trials, nutrition, support groups, legal issues, and many more.  We even participated in a Qigong session together.

https://en.wikipedia.org/wiki/Qigong

Yesterday, we also visited the WeSpark cancer support center.  Jen had her first intake session and is now able to take advantage of all that they offer as well.

http://www.wespark.org/

Chemo delayed again

Jen's platelets are still too low to resume chemo.  Her numbers on Wednesday were about the same as the previous draw from last Friday.  Either she has been stable for about 5 days or dipped lower and is now on the rise.  In either case the doctors feel we need to give her bone marrow more time to recover and should not do another blood draw until Tuesday of next week.  If her counts are high enough we will resume chemo at that time.

This is obviously frustrating for us, but hopefully we will be able to find a dose where she can continue her cycles on a consistent schedule.  She should be starting a new cycle every 28 days.  Hoping to start next Tuesday and praying that the lower dose does not cause her platelets to fall so drastically and that it is still effective.

We will be attending much of the Brain Tumor Conference this weekend at UCLA that I previously mentioned.  Should be a good chance to learn a little and perhaps meet other patients going through the same thing.

Chemo delayed again

Unfortunately Jen's platelets fell again on her last blood draw on Friday.  She was due to resume the chemo on Friday, but had to delay.  She goes in for another blood draw tomorrow and hopefully will be able to resume at that time.  If she is able, we will have to lower her dose yet again.  She will be at a dose that is only about 55% of the known effective dose for her body weight.  Hopefully, it will be enough.

A Stable Scan!

Jen's latest MRI shows no progression.  There also appears to be some shrinkage of the non contrast portion (the residual edema from the radiation).  This is obviously positive news considering the differences in interpretation of her last scan as well as the fact that Jen can only tolerate extremely low doses of  the chemo.  Unfortunately, Jen's platelets are now below where they need to be to resume with the next cycle of chemo.  She is scheduled to resume on Friday, but this will depend on her platelet levels.  We will check her blood again this Friday and if her platelets have recovered sufficiently we will begin the next cycle.  Her levels will help determine the next dose.  We also return this Thursday to Cedars to follow up with them as well.

We are both extremely relieved.

I am sure many of you have already seen the HBO special that premiered this last weekend called "Killing Cancer".  It examines many of the promising newer therapies using viruses such as measles, smallpox, polio, the common cold, and HIV to combat cancer.  Although vaccine and immunotherapy treatments are still in the early clinical stages, there is a lot of promise and hope out there.  Currently, Jen is ineligible for any clinical trials available because she is stable (a good thing).  If you wish to check out the info from this HBO special check out the following link:

http://killingcancer.vice.com

And here is the full episode available to watch even without an HBO subscription:

http://www.hbo.com/vice#/vice/episodes/03/00-vice-special-report-killing-cancer/video/killing-cancer-full-episode.html/eNrjcmbO0CzLTEnNd8xLzKksyUx2zs8rSa0oUc-PSYEJBSSmp-ol5qYy5zMXsjGyMXIyMrJJJ5aW5BfkJFbalhSVpgIAXbkXOA==


Coming up on the weekend of March 13-14 is UCLA's 15th annual Brain Tumor conference.  This is full of panels and info and is geared towards patients and their families, caregivers and friends.  Jen and I plan on attending at least a few of the events.  If anyone who is local would be interested in joining us for support/education please let us know.  The event is free.  If you are interested you can check out the link below.

http://www.neurooncology.ucla.edu/BTC/Conference.aspx

Jen's thoughts & feelings

It's me, Jen popping in again.

I love the photos Randy posted from our walk through the gardens from Thursday. What a beautiful place, and Randy mentioned my affinity for birds, well, lets just say that is an understatement!  For those who don't know me well, I've picked up a new hobby of birding. You may call me a Bird Nerd. Unfortunately, since our walk was so spontaneous I wasn't prepared with binoculars (thank you Mom and Dad) or my phone camera.  It was a lovely afternoon!

Overall, I'm feeling strong, and healthy. I'm exercising every day now, and beginning to practice deep breathing and meditation exercises. I'm even looking into Tai Chi and Qigong. My physical therapist says it will be good for balance and concentration.  There are some classes offered for free for cancer patients! (Locals: Be on the lookout for requests for transportation. All classes are in Sherman Oaks.) And as you all know, I'm still on a Ketogenic diet and doing well with it, thanks to the help of Jen and Tim.

So far, I've had no real side effects of the Optune/Novocure TTF (that is the thing that literally has "Traducer Arrays" taped to my scalp), outside of lugging the 8 lb device around with me all day.

Tomorrow's the big day. Next MRI, followed by a discussion with my neuro-oncologist about next steps.  I'm kind of half-terrified, and half-excited for the results.  I feel so good, and strong and ready to beat this thing's ass.  Wish me luck!