Thursday, January 22, 2015

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.

Tuesday, January 20, 2015

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.

Monday, January 19, 2015

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.

Thursday, January 15, 2015

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.

Monday, January 12, 2015

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.