Exploring options

It's been a long week and next week is shaping up to be more of the same.  As I mentioned in the last post,  Jen did the Leukapheresis at City of Hope this past Wednesday.  We were there for 14 hours, starting at 5am.  We saw her Neuro oncologist on Thursday, and we have spoken with him on the phone at least once a day every day over the last week.

 

Jen did not have another scan done on Thursday as she just had one at our local hospital a week ago.  So, we are still trying to finalize Jen's options.  We have ruled out several, but still need to explore a little bit more this next week.  All the while Jen's cancer is most likely growing even as I write this.  We need to move quickly, but we are at the mercy of Doctor's schedules, trial review boards, and testing that is being done.

 

The first thing to consider are surgical options.  We are meeting with 2 neurosurgeons this next week - one at UCLA and one at City of Hope.  If you participate in a trial, you can't just pick the surgeon and institution you want - you have to use the surgeon and facility partnered with the trial.  Fortunately, both the surgeon at City of Hope and UCLA that Jen would be using are both excellent.  There are several concerns with surgery for Jen.  The first is her scalp wounds from the Optune.  They could present an increased risk of infection, so they may have to heal further before surgery can be undertaken.  The next issue with surgery is timing.  We may be looking at a couple of weeks before surgery can be scheduled, and meanwhile the cancer will most likely grow.  The area of Jen's brain that the tumor is growing is also problematic.  With surgery, she could lose the ability to communicate.  This could also happen just by the cancer growing.  If she does have surgery, it will have to be an awake procedure so that the surgeon can communicate with Jen in order to try and preserve her language abilities.  If we have the procedure at UCLA for a possible trial, there could be a further delay as all of the radiology technicians are on strike for the next 2 weeks.  She would need to have a new functional MRI, and unlike a conventional MRI, these cannot be done at another facility.  They cannot be transferred from one institution to the next.  So with all the risks and delays of surgery, it may still be the right move, because we could get a chance to debulk the growing tumor.  We would most likely do the surgery in conjunction with a trial that may prove to have some additional benefit.  The two most likely are the CAR-T at City of Hope and a Tocagen trial at UCLA.  Each of these has issues as well.

 

The Tocagen trial is a phase 3 trial, which means it has shown at least some efficacy, but it is now a randomized trial (50/50 chance).  Even the surgeon is blinded (meaning they don't know which patients are receiving the drug, and which are not) until right before the surgery.  We are still not sure when the unblinding happens for the patient, but I assume soon after the surgery as the patients who do not receive the trial drug are given 3 options of conventional therapies to try.  Another issue with the Tocagen trial is that the drug injections are given into the brain surrounding the tumor area.  This could again be an issue for Jen due to the location of this particular tumor.  The drug injections could also impact Jen's language ability.

 

The CAR-T trial also has injections, but these are done directly into the cavity of the resected tumor, so the risk of additional damage is less.  City of Hope thinks they can have her cells ready possibly in three weeks.  Since surgery for this trial happens 1 week before the CAR-T injections this would mean Jen could have surgery there in about 2 weeks.  There is also a possibility however, that they are not able to harness enough material from the Leukapheresis that Jen underwent last week.  We won't know for about a week and a half.  So we could wait for this, and not have the option after all.  City of Hope also has a neural stem cell trial that Jen qualifies for, but this one has the added risk of injections into the surrounding brain tissue which again is a concern for Jen.  Also, the trial has only had a handful of patients so far, so the data is far from conclusive, but the longest anyone in the trial has gone yet before another recurrence is only 2 months.  Jen could be the exception, but with the added risks and low success rate so far, this one is probably low on the list.

 

Then there are a few other trials which we have ruled out for various reasons.  The next option is using other chemotherapy agents.  However, due to Jen's sensitivity to chemo with regard to her platelet levels, there is concern that her platelets could possibly be affected so much that they don't recover with a different chemo.  The chemo she has used previously is the most tolerated of the options available, and even then Jen was only able to handle a very small dose.  If Jen's platelet levels were permanently adversely affected, then there would be very little Jen could do.  She would no longer qualify for any trials, chemo, or almost any other therapies available.

 

There are also the possibilities of using certain drugs off book, but this could be a struggle with the insurance.  Also there really aren't any know homerun drugs, but there are a few that could provide benefit.

 

The last option is using Avastin.  Avastin is a drug that probably has the best chance of holding the cancer at bay for a short while.  The average is about 6 months, with some patients going less and some patients surviving for years on this drug.  The downsides to using Avastin are several though.  First it does have a small chance of killing the patient.  The chance is small, but very real.  Second, the drug hinders healing ability.  The wounds on Jen's head may have even more difficulty healing.  This can also create a greater risk of infection if surgery is undertaken at a later time.  Lastly, using the drug is a disqualifier for the bulk of clinical trials out there.  The CAR-T trial, though does not have this barrier, though the needed surgery could have more complications.  There is some debate about this fact however - we will learn a lot more this week.

 

We have set almost all these options in motion as each requires a few details to be worked out.  So hopefully, we can begin a new plan of attack as soon as possible.

 

On top of all this, as of May 1st our local hospital is no longer in our insurance network.  This means that Jen no longer has a close place to go for neuro PT if she does have surgery.  Each visit would probably consume a half a day.  This also means that we no longer have a decent ER close to us that is in network.  Hopefully this won't be an issue.

 

I hate how all of this seems to move so slowly.  I have grown to dread weekends when nothing happens other than emergent care.  Then next Friday starts UCLA's Brain Tumor conference which will take out all of her UCLA doctors for at least an extra day.  Unfortunately cancer doesn't wait, especially when it is as aggressive as what Jen has.  The delays are probably the most frustrating part of all this.  Hopefully we will know the options available soon and can make an informed decision.  Hopefully we will make the right choice.  Please keep us in your thoughts and prayers as we seek guidance and continue to hope for the best possible outcome.

 

Last night, we had tickets to a concert at the Hollywood Bowl that were purchased months ago.  I asked Jen whether she wanted to go or not and Jen said she did.  It was a Saturday night and we couldn't do anything further until Monday.  As usual Jen spent half the night dancing on her feet, still trying to enjoy life as much as possible, even in these stressful times.  It was good to have a night away from medical issues, probably our first one in about a month.  But as you can imagine, it is hard to just forget about all the issues weighing upon us currently.  Below are a few pictures from the concert.  I will try and keep the updates flowing as we learn more.  I have also changed the layout for the blog again as May is Brain Cancer Awareness month.  Go Grey for May!

 

Jen at the Bowl!

The Yeah Yeah Yeahs.

LCD Soundsystem