Thursday, May 31, 2018
A stable scan!
Monday, May 28, 2018
A quick update as we await Jen's next scan
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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.
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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.
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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.
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Earl is the one standing - Happy Birthday! |
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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!
Monday, May 14, 2018
UCLA Brain Tumor Conference
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.
Thursday, May 10, 2018
Next Steps
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.
Sunday, May 6, 2018
Exploring options
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Jen at the Bowl! |
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The Yeah Yeah Yeahs. |
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LCD Soundsystem |
Wednesday, May 2, 2018
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.