Sunday, April 15, 2018

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.

Friday, April 6, 2018

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.

Wednesday, April 4, 2018

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