A stable scan!

Jen's scan today was stable!  As I mentioned earlier, the Avastin only works for about 60% of patients with GBM.  Fortunately, Jen is in that group.  The scan is actually fairly dramatic in it's difference to all her previous ones.  The contrasting areas which are expressions of her tumors have largely disappeared.  How much is really a durable effect and how much is an illusion caused by the way Avastin works the doctors can't really say.  The tumors are definitely still there, but they hide their presence a little.  Fortunately there are other signs the doctors can use to track their progress.  Avastin works for an average (for those that the drug works for) of about 6 months.  As always, some patients see less time, and some more - some outliers see years.  Hopefully Jen will have a long progression free period on Avastin.  Her doctor also checked for any signs of strokes from the Avastin and found nothing detectable.  This along with a brain hemorrhage remain the largest severe risk and affect about 1% of patients.  This can happen at any time while on the drug, so we and her doctors will have to keep an eye out for that as well.  Jen's next Avastin infusion is this coming Monday and her next scan will be in 6 weeks from today.

A quick update as we await Jen's next scan

Jen has been doing pretty well overall.  Since starting the Avastin, we haven't noticed any real decline, and in some areas a little improvement, so hopefully this is a good sign that the Avastin is working for Jen.  She has had 2 infusions already, and if the scan is good on Thursday she will be going in again for an infusion a week from today.

Jen getting her Avastin infusion

Jen did have another small seizure 8 days ago.  It lasted less than a minute and was much like her recurring mild seizures that she has had over the last several years.  Still, we were hoping with Jen's increased dose of seizure meds that she wouldn't be having any more.  We were also hoping to lower Jen's dosage, but with this latest seizure that is probably off the table.  The change in med times doesn't really seem to have had any impact and Jen's biggest daily challenge is fatigue which has definitely increased since the escalation in seizure meds.  Jen finds now that she needs more caffeine just to get through her day.  But with planned naps and a long night's sleep, she is still able to do activities.

We attended the annual UCLA Brain Tumor conference which as usual is a great resource for patients to learn more about all aspects of dealing with brain tumors - from treatment options to coping strategies for impairments caused by brain tumors.

Wearing Grey for Brain Tumor awareness

As my knee is recovering, and I am going through PT, we are both trying to get a little more active together.  We have been taking a lot more walks and even managed to get a little hike in for almost an hour.  Jen does sometimes need to use a cane these days, more so in the mornings before coffee.  This has been something that she has needed since the second recurrence, but her balance does seem to be holding and she has not had a fall in a while.

Hiking along the local Paseo.

We hosted a friend Earl's birthday party at our house this past weekend.  Great to sit around our ball o' fire with some good friends.

Earl is the one standing - Happy Birthday!



A little blown out, but you can still see Jen smiling & enjoying the fire!

We also managed to go see Tom Jones at the Greek theater last week.  Jen, as usual danced at least half the night.

Jen's next scan is this Thursday.  As always, please keep the positive vibes and healing prayers coming our way.  We welcome all.  In other news, Jen passed the screening blood work for the neural stem cell trial at City of Hope and the T-cells grew well for the Car-T.  The Car-T cells still need to undergo some safety testing, but if all goes well they will be ready for release in about a week.  Once they are available they can be frozen in storage for use when Jen needs them.  It's been a challenging few months, but Jen is still in this fight and as you can see from the pictures, still living life to the fullest!

UCLA Brain Tumor Conference

This coming Friday and Saturday UCLA will be holding their 18th annual Brain Tumor Conference.  Jen & I plan on attending.  This will be the 4th year in a row that we have gone.

We invite anyone in the LA area to come for either or both days.  It is a good opportunity to learn a little bit more about what Jen deals with.  In addition to insightful speakers there are also opportunities to participate in some fun activities like Qi Gong, and Music Therapy.  If nothing else it's a chance to hang with Jen for the day. Registration is free.

If anyone is interested, please contact me so I can let you know what sessions Jen and I are signed up for so that you can attend with us.

Next Steps

We met with our Neuro Surgeon at UCLA on Monday.  Jen was preliminarily eligible for the Tocagen (a type of viral therapy) trial.  However, Jen's doctors informed us that there was still a 30-40% chance Jen would wash out during the final trial evaluation process which wouldn't be able to be completed until after the final FMRI, Brainmapping, Neuro Cognitive study, etc.  These tests would all not be able to take place for at least 1 1/2 - 2 weeks.  She was looking at surgery on the 25th of May, but wouldn't know if she was actually eligible for the trial until close to that date.  On top of all this, even if she qualified for the trial, there would only be a 50% chance of actually receiving the drug as this is a third stage trial.  In addition, there is concern that her scalp wounds presented an added risk of infection and the skin on her scalp is fairly tight and may create difficulty with closing the incisions properly.  We would probably need to get a plastic surgeon involved.  Meanwhile until this time the tumor would grow, which might erode Jen's ability to communicate.  The surgery may take away additional language function and if she did get the actual drug, the injections could further take away expressive function.

A quick explanation about Jen losing the ability to communicate.  The danger with this is not just related to speech.  She could lose all ability to express herself.  Whether that is writing, speaking or even using a device with pictures and words for Jen to point to.  How much she would lose cannot be determined in advance, and this may eventually happen just from the cancer growing on it's own.

Jen and I both have noticed a slight decline in just the last couple of weeks as it is.

Our only real option for immediately halting the progression was Avastin.  We had already worked to schedule that appointment for Monday afternoon as an option.  Due to the strike at UCLA, they were unable to reschedule the Avastin treatment.  They wouldn't be able to reschedule until Thursday and Jen wouldn't be able to get an appointment until the following week.  UCLA wasn't even able to tell us whether we could get her in on Monday or have to wait until Friday of the next week.  Not until after the strike.  So if we delayed any, our immediate option would have almost the same time delays as our surgical options.

So with all this to weigh in, we opted for Jen starting on Avastin.  Avastin is a blood vessel growth inhibitor.  It buys time for about 50-70% of patients who use it.  Whether or not it works for Jen, we won't know for sure until her next scan on May 31st.  As I mentioned previously there is also the possibility that Avastin can kill the patient.  About 1% of patients who use it die from a brain hemorrhage.  This can happen at any time while using Avastin, even months after starting on it.  It's a low risk, but not insignificant.  If it works for Jen, the average response time before another recurrence is about 6 months.  Some patients get much less and as with all treatments some patients are outliers and get significantly longer.  Some patients get years. Hopefully, Jen will be one of those patients.  As long as it is working she will need to have IV infusions of the drug every 2 weeks.  If Avastin works for Jen her future MRIs will need to be interpreted differently as the drug can hide the contrasting regions of the tumors.  Her doctors have other ways to monitor tumor progression though.

The other side effect of Avastin is that it makes wound healing difficult.  The wounds on Jen's scalp have begun to heal and hopefully will continue to do so, but may be impacted by this drug therapy.  If her wounds heal sufficiently, we would like to resume the use of Optune.  We will have to tread lightly and may have to either use it much less or have frequent breaks anytime wounds begin to appear.  However, we do believe that Avastin plus Optune will provide a longer response than Avastin alone.  Hopefully Jen can begin using it again soon.

Using Avastin does not rule out either the Neural Stem Cell trial or the CAR-T trial at City of Hope that I have previously detailed.  We will know within about 2 weeks whether she is ruled out from the Stem Cell trial and whether or not they were able to harvest enough of the specific white blood cells that they need for the CAR-T.  If all is good, these will most likely be our next steps.

Ultimately, like Jen and I have always felt this is all about buying time.  If you can buy enough, perhaps there will be something else that becomes available to buy more.  If nothing emerges from the pipeline, at least we will have bought more time to spend together.

We met with Jen's seizure doctor on Tuesday and although we won't be lowering her dosage immediately, we are changing the dose schedule to break up the morning dose.  Half will be given in the am and half in the afternoon.  Hopefully this will help with her fatigue and increased anxiety some during the daytime while she is awake. She does seem to have acclimated to the increased dosage a little already.  Hopefully this change will help further.  If the Avastin works and Jen doesn't have any more seizures we may be able to slightly lower the dosage.

As always, please keep us in your prayers and thank you to everyone who has been there throughout.

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

 

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.