Jen had her last Car-T injection about 3 weeks ago. The next day, following the draining of cerebral fluid, and after getting Jen home, she had an extreme reaction. Jen became completely unresponsive. We returned to City of Hope where Jen was hospitalized for about a day. The latest round really knocked her for a loop. She has always been out of it for several days following the injections, but this was obviously much more extreme. Basically, the reaction was due to her immune system being in hyper drive and due to all of the inflammation that this causes. We're not sure exactly why this latest round was worse for her - the dosing was actually a little bit lower than the previous one. It could be due to a cumulative effect or the addition of the Keytruda and Avastin. As we are now outside the parameters of the Car-T trial and the additional doses are optional, we are able to pursue combination therapies. Of course, while in the hospital, Jen's sodium levels again were an issue. The doctors have now tripled the amount of sodium tablets that Jen takes.
Jen has since recovered, but still struggles with all of the additional deficits I have discussed previously. She just had another infusion of Keytruda and Avastin yesterday and is due for her final Car-T injection this Monday. This will be her final Car-T because all of the T-cells that were harvested will have been used up after this final one. Hopefully this last dose won't affect her as severely as the previous one did.
Jen also did receive and start the EGFR drug I mentioned previously that we were trying to get directly from the drug company as her insurance won't cover it. This drug - Tagrisso, targets a specific genetic marker that is present in Jen's cancer. Unfortunately after taking it for about 10 days, Jen developed a pretty dramatic rash over her torso, neck, and head. This is a common side effect for patients taking this drug. Many people continue taking the drug after the rash appears and there is some evidence in other cancers that those who have this side effect may have a better response from the drug. However, due to Jen's upcoming Car-T on Monday, we have temporarily suspended the drug for at least a few days. Jen will most likely resume it after she recovers from the Car-T.
We also had a brief urgent care visit 2 days ago after Jen had a fall in the bathroom. She hit her head and had a few lacerations on her delicate scalp. Fortunately, nothing requiring stitches. She has also been having a great deal of pain in her drop foot lately. We had her foot x-ray'd while at the urgent care just to make sure there was no hairline fracture and they didn't see anything. Not sure why the sudden pain in the foot. Perhaps due to the Avastin, although previously her joint pain has never affected her foot. Will keep an eye on it.
Jen's next scan will be on the 13th of November. We will see if any of the combination therapies are having any effect. Overall, Jen has improved slightly in the last 2 weeks, but this could all be due to decreasing the inflammation and may not be indicative of the cancer at all. Jen unfortunately lost an entire week with at home PT, OT, and speech because after her 24 hour stay in the hospital, all of her orders were automatically nullified by the insurance. She needed to get entirely new orders, followed by an entirely new evaluation. This is apparently standard procedure. Of course no one mentioned this to us until the week after Jen recovered from the Car-T and we tried to book visits.
I also want to especially thank all the friends who have stepped up to really help out. There have been many, and we both feel especially blessed with all the help offered and given. Thanks especially to Lisa, Jen L., Kathy, Fred, Joe, & Mike. You have all helped so much. We cannot begin to thank you enough.
Fortunately, we have also had a brief respite of almost 2 weeks without any medical appointments and we have been able to take advantage of this a little. About 2 weeks ago we finally got out and about for our first night outside the house that was non medical in well over 2 months. We went to a concert that we had gotten tickets to long ago for one of Jen's favorite artists. It was something that Jen was not wanting to do at first, but finally decided to go. We went and Jen had a great time. I think it was good for her to finally be able to get out of the house/hospital and do something social.
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| Jen & I with Tom at the Nick Cave concert |
Then, we were able to use some rewards points that Jen had accumulated for Hilton while she was doing business travel and stay for a couple of nights at a hotel right on the beach. We had a room with a balcony looking directly over the ocean. When Jen's previous boss heard we were going to get away for a couple of nights, he got Deutsch to give her a visa gift card for the trip which he brought while coming to visit with Jen. Using that very generous gift we were able to stay an extra night. Thank you John & Deutsch! Having a couple of days by the ocean was amazing and a well needed break away from all the cancer crap. We spent time in the pool, by the fire pits, and of course, many hours on the beach. We both had a great time.
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| Jen enjoying her morning coffee on the balcony |
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| On the beach! |
Then, to end the week we had a couple of visitors from out of town. We saw Dash, who was in all the way from Spain (neglected to get any pictures), and then, the last two days we spent visiting with two of our close friends from college days.
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| Hanging out with Steve & Christina. |
Next week, I expect Jen will be pretty out of it until near the end of the week following the Car-T. After next week, we have an upcoming out of town visit from one of Jen's oldest high school friends. Anyone wishing to visit with Jen, please reach out to me and we will try and set something up.
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