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.
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