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!

Jen's latest blood draw and a spontaneous afternoon walk

Jen had her latest blood draw on Thursday and all of her numbers are still good.  Her platelets have dropped, but not alarmingly.  We will need to check next week to see if they drop further before she will be able to resume any further treatment.

The big news we are waiting for will be this Monday.  Jen gets her next MRI.

While driving home from UCLA, Jen spontaneously decided she wanted to go for a walk.  We had a very enjoyable visit to the Japanese Garden in Van Nuys.  Jen was able to walk around for over an hour and was especially excited to see the variety of birds they had at the park.



Some of you may recognize this place - it was used as Starfleet Academy in Star Trek.

The waterfall's three levels represent heaven, man, and earth.

Another Update

Jen had her latest blood draw yesterday and all of her blood levels are good and continue to rise.  She is not yet at the nadir following her last round of chemo - that will be in about another week to week and a half, but during her last round at this point her levels were already falling.  If her blood levels hold and if the next scan reveals no growth, we will start her next cycle in 2 weeks at a higher dose, though lower than the previous cycle that she had difficulty with.

She also received her latest report for compliance with the Novo device and beat her own record which was already a high for any patient at UCLA.  There is a patient from Cedars with a higher score - a 90 year old woman!

Jen continues to fight and is giving it her all.  She works out daily, meditates, continues to work on her speech and cognitive function.  We are making a slight tweak to her diet by increasing the Ketogenic ratio a little bit.  The extra calories from fat will help her to achieve a greater level of Ketosis as well as allow for a day of fasting once every 10 days.

Meanwhile, we are getting ready for our annual Oscar party tomorrow and looking forward to seeing everyone who can make it.

Jen's next blood draw will be at the end of next week and her next MRI the following week.  Please keep us in your thoughts and prayers as we hope for positive results.

Chiming In

I know, I know, I’ve been bad; leaving you reading only the updates from Randy, and never once from me!  I’m here!  It is really hard work getting well, and I’ve been busy with that.

I want to echo Randy’s Thank You to all of you who have donated your money, your time, your prayers, and all of your love and and support.  I couldn’t imagine going through this without the power of this village behind me. You all give me such vigor and a positive attitude that I CANNOT possibly lose this fight.

Jen's Decision

The blood work from Friday was good.  All of her levels are up!  We have thought long and hard about what to do next.  We have had numerous conversations with our doctors and researched on our own as well.  Jen has decided to resume the chemo, a decision that I agree with.  There were several factors which I won't bore you with that helped us reach this decision.

Jen began her 3rd cycle of the chemo last night.  The dosage is lower than the previous one so hopefully her system will tolerate it better.  Will keep you posted.

THANK YOU!

I just wanted to post a general thank you to everyone who has helped us over the last several months. 

Our donation site to help raise funds for Jen's medical bills has now closed and we achieved 94% of our goal.  This was in addition to the one Jen's work colleagues had created which achieved over 100% of it's goal.  Thank you!

We have also had numerous friends who have helped out with transportation, meal prep, cleaning, and just being there to visit and talk with.  Again, Thanks to all of you.  It means a lot.

Jen's latest blood draw

I just realized, I never published the previous update I had written.  My apologies.  I have begun with that posting and then move on to a more current update:

(FROM WED, JANUARY 28)
Jen had her latest blood draw on Monday (Jan 26).  Her platelet levels were up, but not enough to resume chemo yet.  Unfortunately, her white counts have now moved lower to the point where these are also preventing her from resuming the chemo.  Her next blood draw will be next Monday and hopefully everything will have improved by then.

Jen's doctor at Cedars is very concerned with the fact that she is not tolerating the chemo.  He supports moving forward with a different drug called Avastin.  This is a drug that UCLA has discussed with us as well, but they don't believe she should begin taking it at this time.  It is a powerful drug that most brain cancer patients eventually end up using, but it also has potential serious side effects, although it doesn't affect platelets and white counts the way chemo does for some patients.  Another major drawback to starting Avastin, is that once a patient begins it's use they are no longer eligible for many of the clinical trials available that they might otherwise be able to participate in.  Jen is not a candidate for any clinical trials presently as she is still non recurrent (the cancer hasn't begun to grow again since beginning radiation/chemo).  We are weighing options, but can't proceed down either path until her blood levels return.  We will know more next Monday after her blood draw.

(FROM TODAY, WED, FEBRUARY 4)
So, Monday's blood draw showed an increase in platelets and white cell counts.  Her platelets are now high enough to resume chemo, but her white counts are just shy.  We will have another blood draw on Friday when we also see the seizure specialist at UCLA for a follow up.  Jen has been seizure free now for 2 weeks since increasing her medication.

Our biggest issue is wrestling with what to do next.  We are at a crossroads.  We have 2 of the best doctors from 2 of the world's best centers for brain cancer and we have 2 different opinions on how to proceed.  It was great when they were in agreement, but I guess ultimately this is why you seek out a second opinion.  We are just trying to do as much research as possible and hopefully arrive at the best informed decision we can.  Lots to consider.

Today, Feb 4th is also World Cancer Day.  We are at least fortunate enough to live in the US and have access to leading cancer facilities.  Not everyone has these same options.
http://www.worldcancerday.org/