An update as we await Jen's scan this Thursday

It's been a challenging few weeks.  I really feel continually frustrated with the clinical trial process at every turn.  As I have mentioned previously, due to Jen's multifocal tumor situation, she is ineligible for the vast majority of clinical trials, but it has also been extremely difficult to find out which other available ones she may actually qualify for.  Many institutions won't even consider whether they have anything that you may qualify for until an in person visit takes place.  Obviously this presents challenges if you are looking at options in other states.  Not every institution works this way.  We have been able to do everything remotely for City of Hope - even though they are close to us and we are willing to go there for a visit.  Their tumor review board will be presenting Jen's info to see if she qualifies for anything there.  Cedars currently doesn't have anything.  UCLA - maybe.  Saint Johns - maybe.  I had been working with Johns Hopkins for over a week emailing them all the info they needed, getting scans to them as well as doctors notes, lab work, pathology reports, etc.  Even though, I had explained our situation up front, it wasn't until after getting them everything, that they told us we needed to have an in person appointment before they would even consider whether they might have a trial that Jen would qualify for.  This is ridiculous.  I understand that an in person visit would need to be undertaken for final consideration, but there should certainly be a remote prescreening that can happen before one hops on a plane, spends precious resources and more importantly precious time chasing down what may be a complete non starter.  We are also looking into other institutions like NIH, Duke and San Francisco.  We shall see.  The rules on whether an individual qualifies are fuzzy at best and can come down to the individual interpretations of Jen's scans by which ever doctor is undertaking the trial.  Some doctors are very conservative and others will fudge things a bit if possible.  Again - something that is impossible to know until the final review.

As I previously discussed, Jen did resume chemo.  She is definitely past the worst of it and we will have to see how her platelets respond this time.  Jen's next scan is this Thursday.  Hopefully there will be evidence that the chemo is at least holding everything at bay.  This is our first best hope.  If not, then we will have to see about clinicals.

We have had follow up appointments at Cedars as well as two surgical consults - one at UCLA and one at Cedars.  We have also spoken to our Neuro Oncologist at UCLA several times in the last few weeks as well.  So what more have we learned?  Unfortunately not much that is good.  We are having an FMRI (Functional MRI) done so that we can see if surgery is even an option.  An FMRI is similar to a conventional MRI except that it is done with greater resolution and also relies on the interaction of the patient in order to map what is actually going on in their brain.  Because so much of Jen's tumor is in the area that affects speech and language, we need to see the current state of her brain.  Jen may have already developed new pathways for her language.  This may explain why we didn't see much of a clinical decline despite the increase in tumor size.  The area of new growth may be able to be resected, but if it is still vital for her communication and the complimentary area on the other side of her brain is unable to make the connections due to the tumor, then we may not be able to touch it.  Even if the FMRI shows that the new growth can be removed, it may not be prudent to do so.  Jen would need 6 weeks or more of recovery, during which time the tumor removed could completely come back, or a new area may grow.  After the surgery she really can't do any treatment for a while.  No chemo.  No trials.  No Optune.  Which brings us to the final surgical concern.  The scalp damage on Jen's head from using the Optune device may completely make surgical options too risky to even consider.  The risk of infection could be too great.  In the end, if it is possible, the strongest case for considering surgery may be simply so that there is more of Jen's tumor available to be tested and utilized for possible clinical trials.

So how is Jen doing?  She has not given up and is still fighting.  She did have another mild seizure today, but it has been over a month since her last one and this is not out of the norm.  Her fatigue level seems to be a little worse, but it is hard to tell since she did another course of chemo which tends to wipe her out anyway.  She is also having an increased involuntary snapping back of her right knee when she walks.  We are looking at getting a knee cage to prevent this.  She hasn't had any falls, so that is good news.  Jen has taken up doing the crossword puzzle every day in the LA Times to help keep her verbal skills sharp.

In spite of all that Jen is going though, she still has found the time to do a few things that bring her joy.  Thanks to a very generous gift from our friends Anne & Joe, we were able to attend a performance of Hamilton.  It came about while Jen was on chemo, but she was determined to go.  Jen has been wanting to see it since it came to Broadway.  We both thoroughly enjoyed it.  Thank you again Anne & Joe.  September 8 was also our 10th wedding anniversary.  Jen and I have been married for 10 years, but we have been together for 30.  We managed to get away for a day and went to an Inn right on the beach that is one of our local favorites.  It was thoroughly relaxing and enjoyable.  It was good to be able to (somewhat) put our troubles aside, even if for only a day.  We even managed to get back to the Bowl for a final concert this season.

Please keep Jen in your thoughts and prayers for this Thursday.  I will keep everyone posted.  Now for a few photos.

Here are a few to show how bad Jen's scalp is.  Like everything with brain cancer, the Optune is a bit of a Faustian bargain.

 

And now for some pictures from some happy days - still trying to enjoy life!

At Hamilton with Anne & Joe

A little fuzzy, but you get the idea.

Our Anniversary!



 

At the Hollywood Bowl

New Order on stage