2019 Consolidated
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The following updates are shown below in chronological order.
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Note: It is my hope that this detailed chronicle can help others dealing with Myeloma or undergoing stem cell transplant. Please share with anyone who might benefit.
January 7, 2019
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I am writing with good news today. We arrived in Houston on Thursday, January 3rd for a full day of testing on the 4th. Joe was accepted into a different clinical trial, GSK BCMA antibody drug-conjugate, and he is receiving the first dose right now. This trial is not CAR-T, but it is an immunotherapy treatment, related to the Nobel Prize-winning research at MD Anderson. This treatment is an infusion that Joe will receive in Houston every three weeks, as long as it is working.
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When I wrote on December 10th, sharing the news that the CAR-T infusion was canceled, we expected that Joe would receive some "bridge chemotherapy" to tide him over until another trial could be secured, or until he could try again for the CAR-T. However, his doctor wanted him to hold off on more chemo, confident that he would get into one of the other trials. So Joe did not have any treatment in December, which is good because he was hit with a double-whammy of strep throat and Influenza A, which landed him in the hospital on Christmas Eve. Fortunately, we were released that same evening, after IV antibiotics and with scripts for tamiflu and more antibiotics. Joe was recovered enough to enjoy New Year's Eve and our 8th wedding anniversary on the 1st, and is feeling much better now.
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We are both increasingly hesitant to write these emails, because there is so much disappointment. It feels like we are in a maze, getting excited each time we think we know the way out, only to hit another dead-end. I imagine that some of our friends and family sense this, or are feeling it with us, even from far away. Nevertheless, we will keep sending monthly updates. It is important for us to stay connected, even as our situation becomes more vulnerable. These new trials - many of which will remain available to Joe in the future - are not silver bullets. Each one comes with the hope of adding 6-12 months to the program. To Joe's life. We hope to piece together as many of these as we can! And we will! But also need our dear ones to understand that it's going to be like this. So when this one stops working, we'll not be surprised, but grateful for the extra time it provided, and looking to the next one. All the while contributing to the body of knowledge that will help others in the long run. Thanks as always for the love, friendship and prayers.
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January 30, 2019
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The immunotherapy trial drug Joe received three weeks ago is officially working! His cancer marker has decreased by more than 75%, which is amazing. He does have some ​visual side effects: corneal swelling and related blurred vision and dry eyes. He is being treated with steroid eye drops and lots of eye lubrication. But... the visual side effects were expected - and are correlated with efficacy. The doctor decided to hold today's dose, giving Joe's eyes a chance to improve. He will get his second dose three weeks from now. Joe is one of fifteen people in this trial, and many of the participants have had to skip the second dose due to the visual problems, but most of them saw continued action from the first dose of antibody. We hope Joe will also have a prolonged benefit. Thanks for all the love and prayers. XO
April 3, 2019
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The immunotherapy trial drug that Joe received in January was very effective, but the corneal / visual side effects were severe, and the doctors held treatment for three cycles (9 weeks). Today his symptoms are improved enough to receive a second dose, albeit reduced. He will likely have the same corneal /visual side effects following this dose (and hopefully the same strong response as last time), but the side effects should resolve more quickly at the lower dose.
While the side effects were technically severe, they weren’t practically severe. Joe has been able to read and drive and watch TV, so the biggest hassle has been having to use three types of eye drops. all. day. long. every. day. Quality of life is very high with immunotherapy - much better than with some of the straight poisons he’s had before. But those poisons got us this far, so we are grateful. Other than blurry vision, we are doing well. We will return to Houston in 3 weeks, hoping for a 3rd dose.
Thanks as always for the love, prayers and friendship. XO
June 3, 2019
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Well... The trial Joe started in January stopped working in March, probably because he missed multiple doses due to complicating side effects. But he did start a new trial last week. This is how it goes. During the time between finding-out that one treatment stopped working and getting the first dose of something else, it feels like we're stuck in some weird limbo, where we can't do anything to address the growing problem, and don't know how long it will be until something changes. It does create a quite spiritual opportunity to just be content, which we somehow are. Anyway, I'm happy to be back in the strategy. Joe seems to be himself regardless.
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This new trial is an updated version of an oral immunomodulatory drug he has had before (previous 2 versions, both evolved from thalidomide, interestingly....) There weren't many side effects with the 2 versions he's had before, and so far, only some itchiness and the hassle of driving to Houston once a week for extensive poking and prodding in the name of furthering science. Joe can work anywhere with a cellphone and wifi, so he's still working full-time for Eric, and that's been great for him. Life is pretty normal for us both, but we are tethered to Houston for the foreseeable future, and gladly.
We won't know how this drug is working until the end of June. We're expecting the best, and will keep you posted. Much love!
August 23, 2019
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The trial drug that Joe started in June wasn't a winner. Besides not working very well to fight his cancer, it took a toll on Joe's immune system, leading to hospitalizations in July (6 days) with pneumonia, and August (4 days) with salmonella. He is scheduled for a 4-day inpatient treatment next week which involves heavy-duty chemo (Hyper-CVAD), intended to reduce his cancer to a more manageable level. This will open up more options for his next treatment, which could include other trials or a protocol just approved by the FDA last month.
As usual, Joe is handling everything like a calm, patient giant of a man. Which he is. Our biggest limitation is that we can't travel very far, as airplanes are too germy for his immune system. ​Otherwise we are in our mostly normal routine. Self-care is big (for both of us), which involves more sleep, fewer outings and more meals at home. Fortunately, cooking is a soothing ritual for me. Our kids are all good, and we are both still working full(ish)-time. Thank you for the love, prayers and good vibes. XO
September 25, 2019
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Quick update: The inpatient treatment at the end of August did have the ​desired result. His cancer marker showed a quick drop to a more "manageable" level, at which other treatments are more likely to be helpful. We met with our doctor at MDA this afternoon, who wants to get Joe into a new trial for a "universal CAR-T" which is similar to the CAR-T trial that didn't pan out last winter, except that it uses donor T-cells instead of Joe's own T-cells. The universal CAR-T product (and it is considered / being marketed as an "off-the-shelf" immunotherapy cancer treatment product) is from a French drug manufacturer, and it has been held up by US Customs and the FDA, but we are assured that MDA is pushing for it's release and approval. Our doc says that if it is not resolved in the next month or two, we may move to another option. But we have a few months now, without treatment, without symptoms beyond fatigue and some numbness in his hands and feet (and a bald head). That's a pretty good deal and we are already relaxing into our routines and praying for the heat to break.
November 21, 2019
Joe had 5 days of inpatient chemo at the end of August intended to sharply reduce his cancer, buying time while we waited for the donor-based CAR-T trial from France to open (to be released by US Customs...). The chemo had the desired effect, reducing his cancer-marker substantially. We were able to return home and enjoy two months without chemo, which have been (thankfully) illness-free and very nice.
The French clinical trial finally opened on October 29, and Joe got the call to sign consent forms on the 31st. We were excited and relieved because in the 8 weeks since he'd had treatment, his cancer-marker had increased exponentially, higher even than it had been in August. Unfortunately, Joe was disqualified from the French clinical trial because he is 65, and while there was some confusion about whether the cutoff was 64 or 65, the pharmaceutical company ultimately excluded anyone 65 or older.
We visited our doctor in Houston yesterday, who decided to repeat the treatment Joe had in late August, again to sharply reduce the cancer while we wait for a spot on a new CAR-T trial out of China. Joe was admitted into the hospital last night at MD Anderson and treatment began early this morning. He should be released on Monday and home in plenty of time for Thanksgiving with our family. I came back to Austin to work for a day, and will join him in Houston tomorrow. My parents are in Austin right now, and it’s nice to have them as partners / backup in putting on Thanksgiving. And of course, adult kids who will help, too.
All that to say, we don’t need anything but love and prayers and - hopefully - visits with friends and loved ones throughout the holidays. We both send our love and thanks to you all and promise to keep you posted. Happy Thanksgiving! Joe and I both still feel like luck follows us everywhere. It's a bumpy road, but our smiles are real.