Another rough week

Jen has been having a lot of seizures over the last 6 days.  She hasn't lost consciousness, but they haven't exactly been mild either.   She's had about 10 seizures starting last Thursday.   A couple have affected her right hand,  and speech.   Most caused facial twitching on her right side.  We have unfortunately had to add a third seizure medication to her regimen.  Hopefully once this med reaches a therapeutic dose, her seizures will be under better control.  She is having increased difficulty with both her speech and coordination.  Thursday before her first seizure she actually seemed to be doing okay - she worked out for 40 minutes earlier that day.  Seizures usually result in lingering issues  (increased confusion, speech difficulty, decreased motor coordination) that improve in the days following the cessation of neural activity.  It's too soon to tell how much Jen will bounce back in the coming days.

Obviously we are concerned as to what is causing the increased activity.  Continued cancer growth is probably the most likely cause.  The Immunotherapy Jen had an infusion of last Monday could also be playing a role. She is still scheduled for surgery at City of Hope in 2 weeks.  Right now 2 weeks seems like an eternity.  Hopefully Jen can recover, keep her strength up, and won't have any major declines before then.

Her platelet levels have also continued to decline from the chemo a month ago.  They seem to be leveling off and hopefully will begin rising again.  Jen's sodium levels continue to remain on the low side and we are seeing a nephrologist this week to see if there is any underlying cause.  Meanwhile, she has also begun taking a sodium tablet prescribed by her doctors.  Beforehand we were told that a salt tablet wouldn't affect her sodium levels and now they have prescribed one.  I still haven't been able to get any clear guidance on this whole issue.  Hopefully the specialist Jen sees this week will help to elucidate the matter.

As you can imagine, this has been a pretty emotional week.  Please keep us in your prayers.

On a happier thought, yesterday was the 31st anniversary of when Jen and I met.  We both wish the present circumstances were different, but we're glad to have been able to spend the day together.

Another progression & more timing issues

Jen's latest scan from yesterday wasn't ideal.  There is more growth, although the scan is a bit inconsistent.  The contrast enhancement shows growth of the cancer while the T2 flair (which is often more accurate following Avastin) seems stable.  Nevertheless, the growth in the contrast enhancement seems significant enough to consider the scan a progression.  Honestly, neither of us was that surprised considering Jen's increased speaking difficulties.  This is now Jen's third progression in just a little over 3 months.  We keep hoping to find something to hold it at bay for a while and haven't had much luck lately.

The timing for the CAR-T again seems to have run into a little bit of a bump in the road.  Jen had been on track for surgery on August 14th with the CAR-T infusions beginning sometime around Sept 4th, 5th, or 6th.  Apparently one of the patients in the current batch had a slight delay and the earliest they can now begin the infusions is on September 17th.  That is almost 5 weeks from the date of the surgery.  An ideal time frame is 2-3 weeks at the most. The problem with doing the surgery too early is that the cancer will most likely grow back completely during this extended time frame and the infusions will have a reduced chance of being effective.  Also, because of the location of Jen's cancer, they will not be able to get all of it, so we are essentially looking at going almost 7 weeks for a new treatment to start for the area that can't be resected surgically.  We had discussed delaying the surgery, but there is concern that operating later could also be more difficult if the cancer grows too much.  If Jen begins another type of chemo, it wouldn't wash in time to do the surgery and again we have concerns that it could tank her platelet counts too much.

We have come up with a plan though that may bridge the gap.  As I mentioned previously, we were exploring an immunotherapy drug that has worked for a lot of other cancer types.  We applied for compassionate use and a financial hardship waiver.  We have heard back from the drug manufacturer and they are willing to give the drug to Jen for free.  The good thing about this drug is that there is only a 2 week wash period before surgery.  So as the plan stands currently, Jen will receive an infusion of Keytruda (the immunotherapy drug being used off book) on Monday.  She will then have surgery on the 28th of August and begin receiving CAR-T around the 17th of September.  Obviously a lot can change and we have no idea if this will even work, but considering the timing issues and Jen's limited options this is probably her best chance.  There could even be an added benefit.  Both Keytruda and CAR-T are immunotherapies.  They could work synergistically and there is research showing that immunotherapy drugs may actually work best by delivering prior to surgery, followed by resection, followed by additional immunotherapy.  Delivering a pre-surgical dose may actually prime the cancer in a way that is more effective.  Whether or not any of this will work for Jen and her cancer is a large unknown.  But Jen's doctors and both of us feel it's worth trying.  We both know it's a long shot, but hopefully it works.

As always, please keep us in your thoughts and prayers.

A Brief Update while awaiting more info

Jen has rebounded from the chemo but is still having pain from the last Avastin infusion 2 1/2 weeks ago.  Her platelet count has been okay so far, but it may still drop more in the next 1-2 weeks.  This Thursday will be Jen's next scan as well as a full day at City of Hope.  We hope the chemo has held the cancer at bay - we will know Thursday.  If there is some growth, then we hope she is still able to qualify for the trial and the surgery.  I will let you know how everything goes.

For those of you that have not seen or talked to Jen in a little while, she has had some increased difficulties over the last few months.  She had two recurrences within the last 3 months and one of the cruelest aspects of brain cancer is that every time there is growth, the deficits are increased as well.  Jen has more difficulty with her balance.  She uses a cane almost all the time now and does need more help with some tasks.  She also has more difficulty communicating.  She can still do it, but writing takes even longer and requires a lot more concentration.  When Jen speaks, she often has a harder time finding the words that she wishes to use.  She can still carry on a conversation, but sometimes it is a little more taxing for her and takes her a little longer to get out what she wants to say.  I can't say whether things are any worse since starting the chemo though, so we are hopeful that the scan will be good.

Jen also had another seizure this past Friday.  It was much more like her usual small ones, but the mouth twitching was a little more exaggerated and it did last for about 3 1/2 minutes, so about twice as long as her typical ones.

One thing we did recently that Jen really wanted to do was to go to the movie theater and see the Rocky Horror Picture Show again.  This is something that we haven't done in over 30 years, but did do together on an early date back in Virginia.  We gathered up a few friends and went to the midnight showing 2 Saturdays ago.  Jen had a blast and we all really loved going to see it again.  Over 40 years later, it still sold out.  This last Sunday, Jen's old boss John invited us over for dinner at his place.  Jen and John have always been close and he has really been a good friend.  Thank you John and Andre for having us over, Jen and I both really enjoyed hanging out.

Jen & John

As always, please keep Jen in your thoughts and prayers for her upcoming scan this Thursday as well as the upcoming surgery.  I will try and post an update on Thursday or Friday.

Swinging for the Fences

Jen is still recovering from her latest chemo, but doing okay.  We have come up with a game plan for Jen's next step.  Regardless of whether or not the chemo is working, we have decided not to schedule the next cycle.  Instead, we are moving forward with the CAR-T trial.  Hopefully the chemo is working and can either shrink the tumor or at least prevent it from growing prior to surgery.  Jen will be having surgery on either the 14th or 21st of August.  They will try and debulk as much of the actively growing tumor as possible and put in shunts for drug infusion.  After the surgery, Jen will need to go to an acute rehab center again and then begin receiving the CAR-T infusions sometime around September 4th.  The surgery will be done as an awake procedure to try and preserve as much of Jen's language ability as possible.

Needless to say this is a risky approach, but also probably Jen's last chance to really try for something novel.  The surgery could really leave Jen with some additional disabilities, but if the cancer continues to progress, she will also have increased impairments or worse.  As I mentioned we will be stopping the present chemo/Avastin regimen.  But if it does work, we will always be able to start it up again if the CAR-T fails.

Jen and I are both scared about the upcoming surgery, but we also realize that this is probably her best shot at any potentially meaningful treatment.  Jen will also be a part of the next group that will receive an even higher dose of the regimen than any patient has received before.  Hopefully there will be no issues with toxicity, and hopefully the increased dose will prove to be even more effective.

It's hard to give up on a course of treatment before we know if it is even working, but if it does work and we wait for it to fail, the chance that the timing will work out for Jen's involvement in the trial is probably slim.  Also, if the tumor grows too much, she will no longer even be a candidate for the trial.  I will update you as things get closer and as we learn more.  Please continue to keep Jen in your prayers.

Walking a tightrope

First, let me get the sodium level out of the way.  Jen's last level that she had to come back to the hospital to have taken was within the range they were looking for.  So that seems to have stabilized and we still have no idea why it got a little out of whack.

Jen began a new chemo this morning.  She is now on carboplatin which is a platinum based chemotherapy.  She is doing this in combination with Avastin, which was given at a lower dose to hopefully reduce the side effects.  This new chemo is done as an infusion.

We are still pursuing the CAR-T trial at City of Hope as well as trying to keep a few other options available.  The reality is we are getting down to the options with smaller success rates.  Trials of course are always a gamble as the effects aren't known yet, but as I have mentioned before, if there is a cure out there presently (or even a treatment option that buys significant time) it is in the trials taking place.  So much of being able to undergo a trial really depends on timing.  Hopefully the timing will work for Jen.  Based on her latest scan she is still eligible for the CAR-T and Neuro Stem Cell trial.  As I mentioned earlier, the Neuro Stem trial has only had a few patients enrolled so far and the results have been less than spectacular.  Even so, individual results can vary widely and they are still in a dose escalating phase and maybe Jen would have better luck with it.  Having said that, our preference has always been for the CAR-T.  Since both would involve surgery, and having surgery twice could do more damage than benefit, we are prioritizing the CAR-T while still keeping the other one as a viable option.

We don't know whether the current chemo/Avastin combo will work at all and we definitely are concerned about Jen's blood counts plummeting.  If this happens, she would also be ineligible for the trial.  Hopefully, even if it doesn't work fully it will at least slow the growth enough so that she can still be a candidate for the trial.  It could also work really well.  This is a small chance, but it is a possibility.

We are also still pursuing the off book use of an immunotherapy drug I mentioned in the last post.

Meanwhile, right now, Jen is resting.  We are preparing for a potentially rough week ahead, but hopefully the side effects will be minimal.

We really are walking a tightrope trying to keep as many options viable as possible.  At some point we may have no choice but to let some of them go, but as long as we can do this dance and preserve some other options we will continue to do so.

Emotionally this has been hard on both Jen and myself.  We understand the odds and they are not great, but Jen is still determined to fight for as long as she can.  Hopefully, we will find something that works and buys Jen some more precious time.

Thanks again to everyone who has offered and given help during this time.  Please keep sending positive thoughts and prayers our way.  We are both so appreciative of all the love Jen has inspired.  I will keep you posted with any new developments.

I would like to end this by posting a few recent pictures of Jen.  I am posting a photo taken yesterday of Jen holding some flowers that were given to her by her old company Deutsch (thank you) as well as 2 photos taken of Jen on a day trip we took about 2 weeks ago that included a visit to Jen's favorite winery.

Jen's status and next steps

We were able to get Jen released from the hospital last night on the condition that we returned today for another blood draw to check her sodium level.  We got the results which I believe are okay, but we still haven't heard back as to whether or not it was within the range they were looking for.   The sodium level is still something that no doctor  (and we asked many) was able to elucidate exactly how to control.  The thing that they were concerned about is the level fluctuations over a 24hr time frame and over a 48hr time frame.  We asked how we can make sure that her sodium level doesn't get low again and they were not able to provide any concrete answers.  Apparently one's sodium level has almost nothing to do with salt in the diet.  It is actually more associated with water consumption.  We asked for a guideline as to how much water Jen should consume and we kept getting conflicting and inconsistent answers.  Jen drinks about 2 litres of water a day, which they thought sounded good.  She has been on a regimented diet and had her blood levels checked regularly over the last 4 years and never had an issue before, so the takeaway is she doesn't need to change anything and who knows why it happened.  Science.

The treatment options for her cancer are not really ideal.  We haven't heard whether she still qualifies for the Car-T trial based on her most recent scan.  However, the trial accrues in cohorts of 3 patients and the current patients must complete 3 cycles of T-cells and an evaluation for any toxicities before they can begin patients on the next dose level.  Jennifer would be in the next group of patients and T-cells cannot commence until September 4th at the earliest.  Jen can't wait 2 months for treatment - glioblastoma is way too aggressive for that kind of delay.

There aren't really any immediately accessible trials that she would qualify for other than the Neuro stem cell trial at City of Hope.  We are waiting to see if that is a viable option, but the last results we heard about involving patients in the trial weren't very promising.

There is an immunotherapy drug that has been FDA approved for other cancers that some glioblastoma patients are trying off label.  We are exploring this as well, but this will take some time.  We must submit the drug for approval to her insurance company - which will deny it as it is not FDA approved for her cancer.  Then we can appeal to the drug manufacturer to essentially give us the drug.  We could purchase it on our own, but we don't exactly have $500,000 dollars to do this.  We have already begun this entire process,  but again probably can't wait for it now, but it may work out after trying something else.

The best immediate option is probably a different type of chemotherapy.   This is risky as Jen had trouble with her platelets on her previous chemo which is gentler than the other options.  We could tank her blood counts permanently in a non-recoverable way.  On top of this, even though she has failed on Avastin the standard approach is to continue with it while adding chemo.  They don't really understand why - but a small subgroup of patients who failed on Avastin and even chemo have gone for long periods of time when continuing to use it.  Her joint pain though is pretty horific.  Only about 10% of patients have the pain Jen is experiencing, and her level of pain is in the top 1% of those patients.  If we go down this path we will probably lower her dose of Avastin.  They used to use a lower dose with success and there really isn't any valid evidence that the higher dose is any more effective.  Even if we lower her dose she may still have the pain, but maybe it will be lessened or perhaps even go away.  But she may have to contend with the Avastin pain at the same time she would be experiencing the effects of the chemo.  It could be a miserable experience for her.

With this last approach, we could also resume using Optune.  However, her scalp still hasn't really healed much and we would probably be looking at skin breakdown pretty soon and have to stop.  We may try it in a much more limited way.

As you can see, there really are no great options.  Having said this, her doctors would not recommend going through these treatments with all the discomfort and serious ramifications if they didn't believe there was a chance that they may work.  Jen and I have also had pretty frank discussions that include discontinuing treatments, enjoying food again and trying to perhaps take a vacation and just enjoy what time she has left.  But after discussing, she's not there yet.  Jen still loves life and if there is a chance, than she wants to fight for it.  Hopefully we can find something that works and hopefully it won't be too uncomfortable for her.  As you can imagine, this has all been rather difficult for both of us. We hope and pray for guidance and a lot of luck. Please continue to keep us in your thoughts and prayers.

Some bad news

Jen had an unfortunate turn.  Saturday night she had another seizure similar to the last one that she was hospitalized for.  She again lost some movement in her right hand temporarily followed by the inability to articulate what she wanted to communicate.   We took her to UCLA ER and Jen was admitted to the hospital where she still is presently.

She has recovered from the seizure, but unfortunately an MRI was done and there is progression of her cancer.   We had hoped for and expected she would get more time from the Avastin since it had initially worked - but such is not the case.  I  had been in the midst of writing a blog entry discussing the side effects she was having from the Avastin  (lots of horrible joint pain), but obviously since she won't be continuing it's use, hopefully that will at least resolve.

Jen's last Avastin infusion was last Monday and unfortunately she now has to wait 30 days from this infusion before she can undertake any additional treatment options.   That's 3 1/2 weeks where we can do nothing to arrest the cancer's progression.   Our next best option is probably the Car-T trial at City of Hope.  We will begin exploring whether that is still available to Jen.  It is possible that due to the growth,  she may no longer qualify.  We are also simultaneously exploring a few other possibilities which I will explain further if we go down one of those routes.

The greatest issue immediately,  besides trying to stop the cancer growth is the deterioration of Jen's communication ability.  We had already noticed increased difficulty in the last week and with the waiting period and possible surgery,  she could be impacted significantly more.  There really aren't a lot of great options and we won't know how much she will be impacted until after the surgery.  Even if all goes as well as it possibly can, the best options left are experimental and may not work at all - but they might.

Currently, the hospital still has not released Jen due to an issue with her sodium levels.  When she  arrived they were low (which may have contributed to her seizure).  They have since corrected, but they rebounded faster than they would have liked.   Apparently too high a sodium level can cause brain damage.  Who knew?  Jen's levels are not even close to high, and every level since has been okay, but they are monitoring closely.  Every 4 hours she is having her blood checked,  then based on the reading she will be instructed to drink more water or less water.  I am honestly having a hard time understanding what the present issue is.  Sodium levels can normally fluctuate by a decent amount and even though multiple readings have been within a few points of each other and on the normal side they may still hold her another night.  I think they are probably being overly cautious.

Meanwhile, Jen is having a difficult time getting any desperately needed rest.  Even with a private room, the interruptions are constant.  Teams of doctors, regular blood draws, social wokers, nurses, housekeeping,  and infernal machines that don't stop beeping even though she is okay.  I  don't believe she has had more than 2 hours of uninterrupted sleep in the last 2 days.  She is exhausted.  We are fighting to get her released just so she can get a good night's sleep.  We will have to see if they feel she can safely go home.

Please keep Jen in your thoughts and prayers at this very difficult time.  I will keep you posted as to what happens next.

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