Some bad news

We have unfortunately had some bad news with Jen's latest scan from yesterday.  The largest of Jen's tumors has doubled in size since her previous scan.  As you can imagine, this has come as a gut punch to both of us and we are still trying to process everything.  The irony is that we have been worried at various previous scans, but we were both feeling comfortable going into this one.

So what does this mean?  Jen is now considered to have her first recurrence (meaning first sign of new or growing tumors since beginning treatment).  There are not a lot of options for brain cancer patients, but we do have a few to consider.  Option 1 is resuming chemotherapy.  Although we probably won't get the benefit we did from the first round, there is a decent chance that this will buy some additional time.  Option 2 is to pursue a clinical trial.

The world of clinical trials is an interesting one and there are various exclusion and inclusion criteria for each trial available.  The fact that Jen didn't have surgical resection unfortunately rules her out of consideration for quite a few trials, and the fact that she is multi focal rules her out of many more.  But hopefully there are still a few that she is eligible for that we can consider.  Many clinical trials today are also based on the specific genetic markers that may or may not be present in an individual's tumor.  Jen's neuro-oncologist at UCLA is gathering a list and reaching out to the directors of various clinical trials to see what she may be eligible for.  We have asked him to consider trials at any facility, even if it involves significant travel, so he is reaching out to colleagues and researching available trials at other institutions throughout the US.  We will talk again on Monday after he has had a chance to hear back and gather the info.  Unfortunately, we have the weekend to get through or we would know more sooner.  We have also scheduled an appointment with another doctor out of the John Wayne Cancer Institute who has a great reputation, to get a second perspective.  We have also ordered the next round of chemo in case she pursues that option and I have arranged to have it overnighted so that she will have it on hand in case we decide to start on Monday night.

There are 3 phases of clinical trials.  Phase 1 is largely about finding the maximum tolerable dose of the given medicine and determining if it has a negative toxicity.  Obviously there are inherent risks to this.  The polio vaccine trial out of Duke that was featured on 60 minutes is a good example.  In the phase 1 - several patients died from receiving too high of a dose.  They ended up dialing it back for the Phase 2 study.  A Phase 2 study is really about determining efficacy.  Most cancer trials prove to be ineffective, but even then, sometimes a small population within the trial may have positive results.  A Phase 3 study casts a much wider net with more patients involved and usually multiple medical facilities.  Most also introduce a control arm to determine the real effectiveness of a given approach.  This means that you would only have a 50% chance of actually receiving the given therapy.  The other 50% of patients may receive a placebo.

Some of the clinical trials for which Jen may be eligible will require additional surgery.  Although her tumors can't be removed, they might be able to get a large enough section to qualify for various clinical trials.  Obviously any potential trials that require surgery to qualify will have to be weighed against the added risks and possible complications that may result from a second craniotomy.

It is also difficult obtaining a lot of information about ongoing clinical trials to determine which ones might be the most promising.  So it can very much be a crap shoot.  Also, entering a trial can take some time - anywhere from a week to as much as a month before actually beginning treatment.  This must also be weighed as presently Jen's cancer is growing and can grow rapidly.  We want to begin attacking it with something different as soon as possible.  Lastly, if Jen pursues a clinical trial she will have to abandon her use of the Optune device she has been wearing for almost 3 years.  Even though her cancer has grown, it is possible that without being on this device it would have grown even more, and she may still be deriving a benefit from the device.  Also even at first recurrence, continuing with the Optune still has a proven positive effect in buying additional time that may be absent in any given trial.

As I have said, we will hopefully know more on Monday and will be better equipped to make a decision about how to proceed.  The reality is often when considering clinical trials, you are making very serious decisions with very minimal info on the likely results.  On the other hand, if there is a significantly prolonging treatment or even possibly a cure, it does not exist in the current standard of care, but may amongst the existing clinical trials.

Although this is a serious hit, we are trying to take it in stride and remain positive.  Jen is in this fight for the long haul and despite the blow, she is ready for the next round.  Tomorrow marks Jen's 3 year anniversary since diagnosis.  Something that only between 10-20% of glioblastoma patients ever live to see.  Jen has already beaten the odds and she is ready to continue to do so.