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.