A rough week.

Last Friday Jen had a breakthrough seizure.   She bent down to pick something up and all of a sudden couldn't move her right hand at all.  The use of her hand came back slowly after about 10 minutes, but then she lost the ability to speak.  Normally with Jen's typical mild seizures, she is aware of them coming on and definitely feels that she is having one. This time however, Jen didn't have any warning or even awareness of the presence of a seizure, so we were also concerned about the possibility of a stroke.  We took her to the ER and she was hospitalized overnight.  Her speaking ability returned about 2 hours after the seizure's onset.   A stroke was ruled out,  so the episode was determined to in fact be a seizure.  Her medication was increased which has had a noticeable effect on her fatigue level as well as her anxiety level.  We are looking to lower the dosage slightly over the next several days, but it will still have to remain higher than it was previously.  Hopefully, she will acclimate over time - I have already seen a slight improvement in the med's side effects over the past few days.

Of course we were also concerned that this new seizure (the most serious one Jen has had since her diagnosis) was caused by tumor growth.  This is unfortunately the case.  This marks Jen's second recurrence.  We are exploring various options for our next step, but are still gathering information.  We will have to move quickly since the cancer won't wait.  I will let you know what we are pursuing next once we know.

As I write this,  Jen is at City of Hope undergoing the Leukapheresis.  Fortunately,  this new recurrence does not exclude her from the CAR-T trial, although we are still looking at 30-40 days before her T- cells will be engineered and grown.  So we will have to pursue another treatment option in the meantime.

My knee surgery went well and I am able to drive again.  The timing worked out well as we will be on the road a lot for our numerous medical appointments as we explore and begin Jen's next treatment options.

Please continue to keep us in your thoughts and prayers at this difficult time.   We appreciate all the well wishes as well as all the hands on support we have received from so many of you.  We can't begin to express how truly thankful and grateful we both are.

A week of tough decisions

Jen resumed chemo last Tuesday night.  She just completed the final dose of her current cycle last night.   Jen is feeling the effects and as per usual she will probably be feeling pretty awful until near the end of the week.  She has also started taking a low dose of Bactrim since her Lymphocyte count is a little low.  This is a common practice for chemo patients and Jen has been on it previously as well.  It can unfortunately lower white counts, but is given to prevent a specific type of serious pneumonia that can occur with low Lymphocyte counts.
Jen went to City of Hope this week for some preliminary blood work and a required physical assessment prior to beginning the first phase of the Car-T trial.  Jen is scheduled for her Leukapheresis on May 2nd.  It will be a long day with her appointment time starting at 5am that day.  Her next scan is the following day - Thursday, May 3rd.
As I mentioned in the last post, City of Hope reviewed their protocol regarding Optune prior to the Leukapheresis after I asked them for a reconsideration.  They have now changed this requirement for everyone going forward.  Hopefully this will be of benefit for others in the future.  Unfortunately, in spite of this, Jen has had to temporarily discontinue using the Optune.  Her scalp wounds finally reached a point where she was unable to continue.  This past Tuesday we debated continuing and decided to keep going.   At about 3am on Wednesday morning the machine began alarming.   Over the next 7 hours we tried everything to make it work.  We changed out every piece of hardware,  changed multiple arrays, all to no avail.  The machine kept erroring.   All this was occurring while we were both exhausted,  Jen was feeling miserable from the chemo,  and on top of all that had swollen eyes and a sneezing fit for hours due to her allergies.  We finally had no choice but to suspend using the device.   We believe some of the scalp wounds were just too bad to allow sufficient contact between the arrays and her skin.   The reality is, we probably pushed longer than we should have, but we were both afraid to stop.  It will probably take at least 2 weeks for her scalp to heal enough to resume.  I wish we could have planned for her stop date instead of being forced into it.  I would have scheduled a wound care appointment for the day she disconnected.  The soonest appointment we could get was this upcoming Tuesday.   Jen is enjoying her new found freedom being untethered, but again if we had planned better,  this freedom would probably be better enjoyed when she wasn't on chemo.
We are both a little nervous about suspending the Optune. especially in light of Jen's last scan.  If the next scan does show growth though, and we hadn't halted,  surgical options would be off the table due to the increased risk of infection from the scalp wounds.   Allowing the skin to heal will ensure we have those options available if needed.  Of course, stopping the Optune, could lead to growth.  There really are no good options, but this was a necessary step.  We both pray that the chemo and diet will be enough to hold the cancer at bay.  Please continue to keep us in your thoughts and prayers.
And on top of all this,  I will be having knee surgery this Friday.  Hopefully, everything will go well and Jen and I can get back to going for walks and hiking - an activity we both really enjoy.

A little growth

So, Jen's scan yesterday showed a small amount of growth in the area we have been most closely watching.  The growth is rather minimal, but it is still noticeable.   Her doctor at UCLA believes it is too small a change to consider it a recurrence and based on modulation we have seen before, he feels the next scan could show stability again.   He also recognizes that the next scan could show more growth as well.  He recommends doing another cycle of chemo rather than changing course at this time.   I am waiting to hear back from Jen's doctor at Cedars Sinai to get a second opinion.
With regards to the trial at City of Hope, I requested a reconsideration about suspending the Optune prior to the upcoming Leukapheresis.  They have reviewed the protocol with the regulatory personnel and concluded that she can remain on Optune prior to this first phase.  Sometimes asking works.   We may still need to stop it due to her scalp wounds, but at least we have the option to continue if we are able to do so.  I will keep you updated about our next steps.

Awaiting Jen's next scan & another crossroads

Jen's next scan is tomorrow.   Please send  all your prayers and positive thoughts Jen's way.

We are also facing another major decision with no easy answer.  After almost 9 months of pursuing and waiting for an open slot, Jen has finally been given a date for the first phase of the Car-T trial at City of Hope.  Pardon me again if I get a bit wonky as I attempt to explain the details.

 

The Car-T trial (a powerful form of immunotherapy known as chimeric antigen receptor (CAR) T cell therapy) has 3 phases:

1. The first phase is a process called Leukapheresis.  This process essentially separates out a specific type of white blood cell from Jen's blood.  This process takes several hours as her blood is filtered.
2. The second phase involves reprogramming these immune cells to recognize and attack a specific protein found in cancer cells - one that Jen's tumor tissue has already been tested for and is positive within her tumors.  The newest form of CAR-T cell therapy, uses “memory” T cells which remain in your body after attacking the cancer. The hope is that they then grow into an active reservoir of cancer-killing cells capable of stopping future outbreaks.  The procedure to create these special cells takes about 40 days for technicians to separate the white cells, enrich them in the laboratory, then add a unique virus to introduce DNA that instructs the T cells to recognize and attack cancer cells. These newly reprogrammed cells are then grown to larger numbers, and then tested for safety.
3. The third phase involves surgery to debulk any actively growing tumor that is operable.  An external port is created.  This port goes deep into the tumor region and possibly adds additional locations for someone like Jen who is multi focal.  This port is then covered by a flap of skin so that access to it can be easily gained.  The engineered Car-T cells are then reintroduced into the patient’s system, where they get to work destroying targeted tumor cells.  The patient may have several courses of these Car-T cells injected into the brain.  The number of doses will depend on how many they are able to create and grow and may also depend on where they with regards to the trial itself.  This is a phase I trial and as such they are still in the process of continually escalating the dosing until the side effects become an issue.  Obviously, since this is a phase I tiral, safety is not guaranteed.  Due to the localized delivery however, side effects so far do appear to be minimal.  As the dosing continues to escalate this could change though.

So, Jen has an appointment for the first phase of the trial or the harvesting of her blood.  It will then take about 40 days for the engineered cells to be ready to inject.  The third phase also cannot be done if she is not presently recurrent (meaning showing active tumor growth).  However, the Car-T cells can be frozen once created for future use.  We love that idea, since if Jen becomes recurrent again there won't necessarily be a lot of other options.  Here's the quandary.  In order for Jen to even undertake the first phase of the trial, she needs to be off any active cancer treatment for 2 weeks prior to the date for taking Jen's blood.  The chemo is not a problem.  If Jen's scan tomorrow is stable, she will be able to undertake her next cycle of chemo and will have about 2 1/2 weeks before the date of the blood draw.  Her next scan in fact would be the day after the blood draw, so if everything remained stable she would even be able to continue with an additional chemo cycle on schedule.

The problem is the Optune device Jen wears on her head.  She would also have to discontinue using this for 2 weeks prior to the blood harvesting.  On one hand, the sores on Jen's head are pretty bad and her scalp could definitely use the break.  But we are both more than a little trepidatious about stopping it's use for 2 weeks.  She might be okay, but what if the chemo and the Optune are having a synergistic benefit and taking a hiatus causes the cancer to grow?  If this happened, she wouldn't even be able to use the Car-T cells because they wouldn't be ready for about 40 days.  One must also keep in mind that all of this is for a clinical trial that may end up having no benefit.  In fact, most clinical trials yield no benefit, but some like the Optune device, which in fact was just recently classified as part of the new standard of care by the NCCN (National Comprehensive Cancer Network) do prove to have a benefit.  Perhaps this trial will yield new hope - or not.  I personally think it is an unfair ask to require the patient to have to stop using Optune.  The device in no way affects Jen's blood.  I don't believe she should be required to stop it for the first phase of the trial.  But, this is what they ask, so we have this decision ahead.  We know that Jen already had a recurrence, so what she is presently doing is buying time, but is definitely not a cure.  We expect that she will have another recurrence at some point - hopefully at a very distant point down the road.  Of course all of this is dependent on Jen's scan tomorrow.  We will discuss all of this with her doctors, but ultimately they can't provide any definitive answers as to whether stopping the Optune for this period will be without consequence.  Jen and I are both on the fence on this one.  Hopefully we will have better insight in the next few days.

As I am writing this, Jen is working out - go Jen!  Jen did have a very mild seizure yesterday, her first one since the end of January.  Nothing too alarming as she seems to have 1 or 2 about every 2 months.  On a lighter note, I would like to share a few photos from this past month as Jen and I keep enjoying life.

Rhiannon Giddens in concert at a historic LA church

Jen loved the funky 70's chair at this restaurant we went to after the show.

A helping hand

Out for the day in the Edna Valley for wine tasting

One of the things we love about where we live - this was the view from
our backyard one day we were outside enjoying the weather



Stable Scan!!!

Jen had another stable scan today!  She will begin her 8th cycle of chemo for the current round on Tuesday.  Not sure if this will be her last round of chemo or if we will do more.  If she stops taking the chemo the cancer could come back right away - or not.  There also exists a possibility that the cancer could become hyper mutated due to the chemo.  This is a known issue with the chemo that Jen is taking.  So not enough can be bad and too much can also be bad.  There unfortunately is no way of knowing what the right amount is.  We are seeing her doctor at Cedars Sinai next week and will consult with him as well.  As we are getting closer to a possible opening at City of Hope for their CAR-T trial we must also keep that in mind as well.  I will be reaching out to them to see where she is at in line.  She will probably need to stop chemo about 4 weeks before eligibility for their trial.  Hopefully we will be able to consult with everyone involved in Jen's care and come to at least a decent consensus about what the next steps may be.  I will keep everyone informed as we learn more.

Awaiting Jen's next scan tomorrow

Jen's next scan is tomorrow.  The days really do seem to fly by.  Jen has been discharged from Physical Therapy, but continues to do her workouts at home.  She has really become refocused and disciplined about it.  She realizes there is a good possibility that she may be in for more surgery this year and wants to be as strong as possible to enable a speedy recovery.  Overall Jen has been doing pretty well.  The chemo continues to wipe her out for about a week each month, and her overall energy since resuming the chemo last August has declined, much like it did during her first year of chemo back in 2015.  The chemo affects her platelets, hemoglobin, and white cell counts and it will take a while for these to come back once she stops taking the chemo.  Jen continues to have memory issues that seem to have gotten a little worse in the last 6 months, but her doctors think this may have more to do with the radiation than the cancer itself.  Unfortunately, since Jen has multiple inoperable tumors, she also received a greater area of radiation than someone who has only a single resected tumor.  As always, please continue to keep Jen in your thoughts and prayers.  I will post the scan results tomorrow or Friday.

We had our annual Oscar party this past Sunday.  Of course we failed to take a single picture.  We had a lot of fun and managed to see a lot of films leading up to it.  We also managed to get to see 2 concerts - one of our favorite things to do together.

The Musical Box

Jen and I at Gogol Bordello

Gogol Bordello

Stable Scan!!!

Jen's scan today was stable!!!  The area that grew a few months ago when Jen became recurrent does in fact look as if it has gotten a little smaller.   As long as Jen's blood work holds, she will resume chemo on Tuesday.  This will be her 7th cycle since her recurrence.  There are no standards for how long to continue with the chemo at this point.  She may have already derived all the benefits from resuming, or maybe not.  There really are no absolute rules at this stage as there are for an initial diagnosis.  Both Jen and I as well as her doctor from UCLA believe we should continue for at least a few more cycles if Jen continues to remain stable.  I'm not exactly sure why, but it is our gut instinct.  Thanks again for all the prayers and support!

A quick update prior to Jen's scan later today

     It has now been a couple of weeks since Jen has recovered from her last round of chemo.  The bouts of sickness have also passed and it has been good to have a few more active weeks.  Allergy season seems to be hitting Jen a little earlier this year thanks to the unseasonably warm weather.  We are still trying to find some relief that she can tolerate.  Jen did have another small seizure about a week and a half ago.  Nothing to be alarmed about as she has 1 or 2 about every 2 months.  I wish they didn't happen, but the alternative of increasing meds with debilitating side effects is less appealing to Jen and myself.  Jen also had a fall in the kitchen about 2 weeks ago.  She is okay and has fallen before, but this is always concerning.  She had had a long day and probably over did it a little.  We do try to be constantly aware of Jen's risk for falls and are constantly taking precautions as her balance isn't always the best especially when she becomes fatigued.
     On a more positive note,  Jen has resumed physical therapy after a long break due to sickness/chemo/sickness/chemo.  Her therapist was surprised to see that after all her inactivity that she hadn't lost any progress.  She is only going about once a week as we need to be judicious with her PT as the year has just begun, but she has also resumed regular workouts at home.
     Jen's next scan is later today.  As always please keep Jen in your thoughts and prayers.  I will post the news about her scan hopefully this evening.
     As I mentioned, we have been a little more active again.  Below are pictures from 2 concerts that Jen and I attended.




Watching The White Buffalo perform on stage

 

Jen posing with Terry at the show

Jen & I with Rich and Terry

 

Jen posing with Jake Smith (front man for The White Buffalo)

Watching Mia Doi Todd

 

Jen & I at Mia's show

 

Stable Scan!!!

Jen’s scan today was stable!!!  She took her last dose of antibiotic yesterday and seems to be on the mend.  If her blood work holds she will resume chemo on Tuesday.  Thanks again for all the prayers and well wishes.  This is a great way to bring in the new year!

Awaiting Jen's next scan and recovering from a second flu

On my last post I mentioned that we were hoping Jen's sickness would improve so that she could resume chemo on time.  Fortunately, she recovered enough to begin the chemo on schedule.  After recovering from the chemo, Jen unfortunately got sick again.  She seems to finally be on the mend.  She did start a round of antibiotics, which we have been hesitant to do since antibiotics can weaken the immune system, especially as her illness was most likely viral.  But if her sickness had continued to progress and it was or became bacterial, she wouldn't be able to start her next cycle of chemo on time.
     Jen has pretty much been housebound for about a month now between the two illnesses and the chemo.  Other than some doctors appointments and blood draws, I think Jen got out of the house only three times.  On Christmas we did drive around for a little while to look at some houses lit up.  One of our neighbors had even driven to the snow and brought back a truck full of it to spread on their front yard.  It of course didn't last for more than a day.  We also saw the new Star Wars and managed to attend 1 concert.  In the audience for the concert was one of Jen's favorite musicians - Lucinda Williams.  I took a picture of the two of them and Jen and she shared an amazing very prolonged hug that lasted a few minutes.
     Jen is definitely hoping to be through with being sick for a while, even though she will hopefully be starting another round of chemo next week.  Jen's next scan is this Thursday.  As always, please keep Jen in your thoughts and prayers as we hope for good results.  We both hope everyone had a great time over the holidays and wish everyone a happy New Year!

Chuck Prophet on stage

 

Jen with Chuck Prophet after the show

Jen with Lucinda Williams

Another Stable Scan!!!

Jen’s scan today was stable!!!  There is still this one little finger like appendage in the new growth (from August) that had concerned Jen’s doctor a couple of months ago.  It does not appear to have changed since then though, but still bears watching.  There are other areas of the newer growth however that do appear as if they may have shrunk a little.

Jen is scheduled to resume chemo on Tuesday if her blood levels hold.  Jen has also come down with a cold or flu and has been pretty out of it since yesterday.  We are trying to give her as much rest as possible so that she can hopefully beat this sickness soon.  If she is still sick next week it could possibly delay her ability to resume the chemo on time.

Next week Jen also has appointments with wound care at UCLA for her scalp irritation and Cedars for a follow up with her Neuro Oncologist there.

Thanks again for all the thoughts and prayers and we wish everyone all the best for the holidays.

Another Update

Jen has completed another round of chemo and her next scan is this Thursday.  She has been doing good for the most part.  Jen did have a couple of bad days following a pair of minor seizures last week, but she seems to have rebounded since then.  It's been about 2 months since Jen previously had a seizure.  This is about her average and they usually come in 2s.  They always give us a little pause and increased anxiety going into a scan, but since they have been ongoing for 3 years, we try to not read too much into them, but a little extra concern is inevitable.

We finally visited City of Hope.  We have been working with them since Jen's first recurrence in August and it took this long to make sure Jen was a candidate for a trial they are conducting.  Jen is now officially in the queue.  There are presently no openings until about June, so we hope she remains stable and can still qualify when we get to the head of the line.  This is an interesting trial that uses a type of immunotherapy known as CAR-T cell therapy.  They also have a stem cell trial that we are in consideration for as well (still need to run a few tests to see if Jen is a candidate).  These are trials for a reason - there are no a guarantees of anything, but they are two of the more interesting approaches out there and ones that Jen is not immediately disqualified for due to her multifocality.  Here is a link to info about the CAR-T trial for those who are interested in learning more (note the tab on the left specific to brain cancer as well):

https://www.cityofhope.org/research/car-t-cell-therapy?gclid=EAIaIQobChMIl_-z48-D2AIVDy5pCh1PTQaaEAAYASAAEgJUbPD_BwE&gclsrc=aw.ds

Tomorrow Jen begins attending physical therapy again to continue working on her overall balance and strength.  Please keep us in your thoughts and prayers as Jen goes for her next scan this Thursday.  I will keep you posted.

We had a great Thanksgiving which we shared with a few close friends (forgot to get pictures).  We also had a really enjoyable visit from two of our nomadic friends on their journey south for the winter.  And of course we got to see a couple of concerts as well.  Pictures are below.

With Tim and Matt at the Elbow show

Elbow

Jerry Lee Lewis!

Jen and I at Jerry Lee

The Killer himself

Jerry Lee joined onstage by Kris Kristofferson



Hanging out with Paul & Mary

With Kathy and Tim for a performance of the Brandenburg Concertos

The Brandenburg Concertos by Bach are a particular favorite of Jen's