Jen' seizures

Unfortunately, Jen had another seizure yesterday.  Again, this one was very small, but it was her second one in 2 days.  We are increasing the dosage of one of her seizure meds.  Hopefully this will do the trick.  Not sure why the seizures have started happening again as her scan from Tuesday shows no change.  Perhaps she has just become accustomed to the meds that she has been taking.  Will let you know if there are any further developments.

A Busy Day - A Big Update

So first the bad news...

Jen's blood counts are still too low to resume chemo.  It does however, seem as if her levels have stabilized.  We will get the next blood draw on Monday.  If the levels have improved enough, then she will be able to continue with chemo.  As I mentioned earlier though, she will be resuming at a lower dose.  This is not an optimum situation, but it may be all we can do.  There are other chemo drugs we can try, but the next most common one for her cancer is actually more likely to cause her platelet levels to fall.  There is another one that we may be able to switch to, that perhaps she will be able to tolerate.  This drug works for some patients, but is ineffective for some as well and we would be starting from scratch to determine her tolerance level.  Her UCLA doctor would like to keep her on her current med, albeit at a lower dose, and hopefully be able to raise it slightly going forward.  Next week we go back to Cedars and will see if they concur.  This is all territory that is kind of unknown.  They don't really know if a low dose is better than no dose, or if all that we would be doing is risking harm to Jen's body for no potential gain.

Now for the good news...

Jen's latest MRI shows no progression of either the cancer or the inflammation that is probably from the radiation.  It has been 4 months since any signs of growth in the tumors.  Jen is also neurologicaly stable and has even made some small improvements.  This result is why her doctor wants to stick with her current chemo regimen, even if at a lower dose.  Something is working, but we are not sure what that is.  It could be a residual effect from the radiation, it could be the chemo that she has been taking, even her diet could be playing a role.  The general rule of thumb seems to be to not change anything if the results are positive.

Jen has now been on Novo TTF for just over 3 weeks and we received our first report card on Jen's compliance.  The data of her usage is stored in the machine and about once a month a representative from Novocure will download and analyze the stored data.  This data reports error codes to identify the sorts of errors the user is experiencing as well as total time in effective treatment.  Jen's score is the highest for any patient ever using this device at UCLA!  Jen is rocking this pain in the ass machine.  It is still too early for any of the results from the scan to be from the use of the Novo TTF, but hopefully this will contribute to success down the line.

In the meantime, Jen is doing het best to fight this damn thing and she is embracing that battle with all the strength and determination she can.  In addition to her outpatient Physical Therapy and Speech Therapy appointments, she tries to do PT at home every day - she even takes advantage of the downtime at her doctors appointments and will do her exercises amidst a waiting room full of people.  She has also been doing meditation and trying to engage her brain as well by doing puzzles and playing games.  Jen is definitely a fighter and she has maintained such a positive attitude.  I am so proud of her.

Jen's latest blood draw

Last Friday, Jen had another blood draw.  Unfortunately her platelets and white counts had another big drop.  Not enough to need a transfusion, but enough for concern.  Tomorrow Jen will have another blood draw and hopefully her levels have come up a bit.  She will definitely need to delay her next round of chemo.  Tomorrow we also get the next MRI.

On another note, Jen had a slight seizure this morning.  This was her first one in many weeks.  I have been emailing her seizure doctor and we are still deciding whether this will necessitate an increase in medication.

As I have said tomorrow is another big day for us.  Keep us in your thoughts and prayers.  Hoping for the best.

Jen's Latest blood draw and update

Jen had her latest blood draw yesterday.  Unfortunately, her platelet levels have dropped substantially and her white count is also down.  Presently her platelet level is too low to resume chemo.  Jen is just not handling the chemo well.  We go back tomorrow for another blood draw and possible transfusion if necessary.  Hopefully, she is at her low point and will begin to recover soon.  She is scheduled to resume chemo next Wednesday.  We will have to see if she is able to.  In any case she probably will never be able to tolerate the optimum dose for her body weight and will probably need to be on a lower overall dose.

In other aspects, though, Jen seems to be doing well.  Her speech and mobility seem to be steadily improving.  There doesn't seem to be any signs of her condition worsening.  Her next MRI is scheduled for Tuesday.  Hoping for positive news.

We are adapting to the Novo TTF.  Much of the early frustrations with the constant alarms was apparently due to a faulty cable.  The alarms have definitely been minimized.  It still is very much an anchor and kind of a pain to use, but Jen has been using it now for 2 1/2 weeks and she wishes to continue with it despite the drawbacks.

Will keep you posted on how things go over the next few days.

It takes a village

We have added a link near the top of this blog site titled "Volunteer For Help".  Many of you have asked us to let you know what you can do to help.  This new link is the answer for those of you who are local and have time available.  Most of the needs are for help with transportation.  We are also looking for a few people to help out with Jen's meal prep.  As most of you are aware she is on a Ketogenic diet and her meals take a while to prepare.  We already have a wonderful friend (also named Jen) who has been helping out a great deal in this area, but we could use additional help.  Anyone who would be willing, please sign up or contact me directly.  This will involve a bit of training.  Please use the new site to sign up for any help you are able to give and check back frequently as it will be constantly updated.  I have also included the link here:  Volunteer Sign Up

Jen's Latest Blood Draw

On Thursday, Jen had a blood draw.  Her white counts and platelets are down, but the doctor is not concerned presently.  Next Wednesday she will have another one and this should be her low point following the last round of chemo.  Hopefully all will be good for her to resume the next cycle.  Will keep you posted.

Jen and Randy take a day off

Last Wednesday, Jen and I had our first day off and out of the house since this whole thing started about 6 months ago.  Jen wanted to go to a favorite winery of ours near Los Olivos.  The weather could not have been better.  It was in the mid 70s (not bad for early January).  It was really a nice day for the both of us that was very needed.  We hope it is the first of many to come.

Jen gets wired

Yesterday a representative from NovoTTF came to our house and trained us for about 2 hours on the operation of the equipment that Jen will be using.  Today we met with the representative again at UCLA in conjunction with our oncologist where the unit was actually applied to Jen and the doctor activated the device.  This is actually a complicated piece of machinery that Jen will be connected to indefinitely if we decide to continue using it.  We will have to see how this impacts Jen's quality of life going forward.  She will almost constantly have to be tethered to either an electrical outlet or a portable battery pack.  Switching power supplies involves several steps - turn off the TTF field, then power down the unit, then switch out a battery or change from electrical to battery, then power the unit back up, then reactivate the TTF field and hope no alarms sound.  You can imagine how annoying this will be if Jen wakes up in the middle of the night half asleep and needs to use the bathroom.  The pack weighs about 8 pounds and the batteries last about 2.5 hours.  They are big lithium ion batteries each about 9 inches square and 2 inches thick.  The portable unit and battery are housed in a backpack.  The Novo team seems to be very supportive as far as trying to accommodate any special needs we may have and they are available 24/7 for tech support if needed - which is a good thing because we are on our first day of use and the unit's alarms seem to be going off frequently.  So far we have been able to troubleshoot them all, but the unit does seem awfully testy.  The treatment does show some promise, but we will have to see how it goes in the next several weeks of using it.  And now for some pictures.

Prepping Jen's dome. 

Make it so.

As Jen's sister is fond of saying "It's a Look."

Welcome to Google Head-ware.

Jen's latest chemo

Jen has just finished with her 2nd cycle of Chemo.  She definitely was very weak and nauseous during the last few days of it.  We will know in about 2 weeks whether or not it has affected her platelets and white blood counts.  Will keep you posted.

Jen's second opinion

Sorry for the delay in posting, it has been a busy week.  Last Tuesday, we went to Cedars Sinai for a follow up visit.  As mentioned earlier, we have been going there periodically for a second opinion.  The doctor at Cedars, pretty much agreed with our doctor at UCLA.  There is nothing further to do at the moment.  He is also not sure about the increase in size on the non contrast portion of the MRI.  He indicated that since he didn't see pressure being exerted against the non affected areas of the brain there is a good chance that it is not swelling.  He concurred that this could be lingering effects of the radiation.  There is no way to be sure and this radiation effect can last for up to 6 months following radiation.  We completed radiation 2 months ago.  I have also included pictures of 2 slices of Jen's latest MRI.  These are taken from the scan with contrast.

Jen's latest MRI

So Jen had her latest MRI today.  It seems as if it is a mixed bag.  The contrast areas, which are used to assess the cancer for determination of clinical trials, progress, etc. seem to be unchanged.  The MRI without contrast however, reveals a substantial increase in edema.  The fact that Jen has not had a pronounced change in physical or cognitive function since the last MRI is a good sign though.  This could resolve itself or it could not.  It is also possible that this latest scan reveals pseudo progression, which is almost like a false positive due to the lingering effects of the radiation.

http://www.braintumour.ca/1649/ask-the-expert-psuedo-progression-gbm

Apparently, an MRI is not always an exact picture of what is going on in the brain.  We are to stay the course and Jen will have her next MRI in 4 weeks.  Meanwhile, we are seeing the head of neuro oncology at Cedars Sinai tomorrow for a follow up with them as well.  Although UCLA is Jen's primary treatment center, we have been following up with Cedars at various points as well for their insight and possible different treatment approaches.  So far, they have been in agreement with everything that UCLA is doing.

Jen is set to resume chemotherapy as well on Christmas eve.  For those of you who are unaware, Jen had a really rough go with her initial dosing of chemo.  Her blood levels tanked and she had to stop 5 weeks into a 6 week regimen.  She required 2 platelet transfusions and 1 hemoglobin transfusion.  It took an additional 5 weeks for for her to completely recover to the point where she could resume chemo.  Apparently this can happen sometimes and is more common with small framed women.  Anyway, her last round of chemo was started the day before Thanksgiving and only lasted 5 days.  She did well with this round, although it was at a lower dose than would normally be prescribed due to the way she responded with the initial round.  This next course beginning Wednesday will be at a higher dose and if she handles this one she will titrate up to an even higher dose for the following round.  Her schedule for the foreseeable future will be 5 days on, followed by 23 days off as long as she can continue to tolerate the chemo.

Jen drops by Deutsch

Yesterday, Jen & I visited with her work colleagues as they were having their Christmas party at the office.  It was a very emotional experience for Jen to see all of her work colleagues, many for the first time in almost 5 months.  Jen says she felt energized by the visit.  Thank you to all of Jen's fellow Deutschers for making the visit joyous and memorable.  Deutsch as a company and as a group of individuals have been amazing through this difficult time.  Their generosity and support has been overwhelming.