2020 Consolidated
The following updates, originally sent in email, are shown below in chronological order.
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 25, 2020
We have been waiting - anticipating - the call for a spot on a new CAR-T trial. We are still waiting. To keep Joe in in a "holding" position until the trial is open at MDA, he has received 2 cycles of inpatient chemotherapy, in September and November. Both times, the treatment worked to knock down the cancer significantly, and both times, the cancer rebounded significantly. We are now starting a third cycle of inpatient treatment, having arrived in Houston yesterday. We expect to be home on January 29th or 30th.
We can't keep doing this "bridge" treatment (Hyper-CVD) indefinitely. The toxicity increases with each cycle, and Joe's immune system gets pretty wiped out for the first month following the treatment. His myeloma has now advanced to involve the marrow of smaller bones such as his jaw and lower skull. The jaw involvement has been particularly uncomfortable as it has put pressure on some important nerves there, causing numbness and pain. He will receive some targeted radiation on this visit (and possibly upon return to Austin, as well) to help with the jaw pain.
Today we will start another 8-week clock, and are counting on - praying for - a CAR-T trial to open and accept Joe. It is the only thing that has a good, longer-term outcome. In the meantime, we are staying busy. It helps. We are pros at setting up shop in the hospital room. Joe is on the phone and computer much of the day, and I'll come and go between here and home to keep myself working, too. I would say our spirits are normal, which is to say, we are pretty happy people, very grateful for all the love and wonder in our lives. We are also worried and sometimes scared, too. But for those of you who have offered food, time, driving, anything! everything!, we are doing okay in those categories :) All positive thoughts, prayers, visions and other forms of energy-help accepted! We love you all.
February 19, 2020
Quick update:
Joe tolerated the third round of “bridge” chemo well, and was released from MDA on 1/30. He then had two weeks of radiation in Austin, finishing last Friday. The pain in his jaw is gone. 👏👏 He is having some residual effects from the radiation, but those should resolve in the coming weeks. We returned to Houston yesterday for labs and a PET scan, and had good news from the doctor today. First, the head-to-toe PET scan did not reveal any surprises. Huge relief. Second, the CAR-T trial we have been waiting for is finally opening at MDA. The “site initiation visit” is next week, and it should be officially “recruiting” by the first or second week of March. Joe has been preliminarily pre-qualified, and is reportedly high on the list. We will return in mid-March and hope to start the process then. But, this is a phase 1 trial, which means that only 3 patients can participate at any one time - across the nation. So getting a slot could take some time, as MDA is one of several sites nationally. Joe may need more bridge chemo, but the doc said we should be cautiously optimistic, and we are feeling relieved and hopeful. I’ll send another update when we have firm plans. Thanks for the love ❤️.
April 17, 2020
Dearest Family and Friends,
I am writing with sad news. We will be leaving MD Anderson, today we think, to go home with hospice care. We have exhausted every myeloma drug and combination available, two bone marrow transplants, five phase-one clinical trials, and now we are out of options. It has been seven years and two months since Joe was diagnosed with high-risk, stage three-of-three multiple myeloma. He has outlived the prognosis for such a serious condition by about five years. We are so grateful for that.
We have been waiting for months for a particular clinical trial, a new CAR-T with almost 100% response rate, which could have given Joe an additional 12-18 months Finally, the trial was about to open. Then COVID came. As a result, everything went into flux. One day the clinical trial was suspended, the next it was still a possibility for Joe, but he had to be healthy enough to participate. He was already taking a "bridge" chemo, intended to put a lid on the cancer's progression, but not necessarily improve things much. It was a pill, and he'd made it through two weeks of the bridge treatment when he began having fever around the first of April. It was low-grade at first, with no other symptoms.
On April 6th, he was so fatigued that he wasn't really getting out of bed, eating or drinking. So we drove down to the MD Anderson ER. He was swabbed for covid, then sent to the covid floor until the results came back, which were Negative. Then he was moved to the Myeloma floor. CT scan showed mild pneumonia as well as several masses in the lining of his lungs which are part of his progressed myeloma. He improved with IV antibiotics, and we returned home on the 11th, a Saturday evening.
We spent Saturday and Sunday nights at home, and on Monday the 13th he was having trouble breathing and spiked fever again, so we drove back to the MDA ER. He was swabbed again, had another CT scan, and was sent to the covid floor until the results came back, again Negative. This CT scan showed worsening pneumonia, the myeloma masses in the lining of the lungs and along the aorta, as well as fairly serious pockets of fluid in the lungs. He was moved again to the Myeloma floor. This time, I was able to join him in his room for two days/one night, which took some special permission, as visitors are generally prohibited now due to covid.
Yesterday, the 16th (his 66th birthday) he was supposed to have a bronchoscopy as they could not determine the cause of the pneumonia (bacterial, viral, or fungal). He wasn't coughing, so there was no sputum to test. NOTE: This happened last July, when he was admitted for pneumonia, with fever but no cough, and they did a bronchoscopy which was inconclusive; they never discovered what was causing the pneumonia. He got better with antibiotics, however, and we went home. So now, he has this mystery pneumonia again, complicated by myeloma masses pushing into his lungs, and the docs said it was possible that he is Positive for covid since someone else tested negative with nasal swab, but positive upon bronchoscopy.
So they moved him BACK to the covid floor yesterday afternoon, and I had to leave. I am staying with friends in Houston. I dropped off his birthday dinner (provided by my sweet parents) at the main entrance of the hospital, and they delivered it to him: beef tenderloin, potatoes, salad and cake. Some of his favorites. The nursing staff sang him happy birthday. He and I had done our celebrating yesterday before they moved him off the Myeloma floor. We cried a lot.
This morning he was supposed to have the bronchoscopy, but his condition worsened during the night, in terms of rapid, light breathing that required high-flow oxygen. The next step was to be intubation (putting him on a ventilator) but we had already discussed this possibility and decided that if it came to that, we would rather go home with hospice care. This morning we had a one-hour webex call with several physicians and hospital administrators - and Joe and myself - where we discussed all of the options and the odds. We made the decision to go home. Because Joe tested negative for covid twice (this week and last week), he is still presumed negative. They were going to check his lungs as a kind of long-shot attempt to see what's going on. They will still report him returning home to the Austin health department as a "potential" covid patient, and request that we remain quarantined, just in case.
Once we are home, Joe's care will consist mostly of oxygen and tylenol (Joe's favorite drug these days :) Fortunately he is NOT in pain. He is completely lucid and we hope to have plenty of quality time together to visit (remotely) with the kids and family and friends. Please contact me by email bpriesnitz@gmail.com if you want to talk to him. Too many texts or voice mail can be hard for me to keep up with.
Joe Priesnitz has more friends – real friends – than anyone I have ever known. From every stage of his life, he has maintained relationships with joy and laughter. It would be great if you could make a little video on your smart phone of yourself telling a story about Joe or sharing a message for Joe. I will show these to Joe, which he will love. And ultimately, I can put them all together and share with the group, since once Joe is gone, we won’t be able to have an in-person service or memorial until this pandemic runs its course. Joe says, if you're receiving this email, you're on his list. Please don't post anything on facebook or broadcast outside of the group.
Joe and I both send our love to you and all of our family and friends. We know that people want to help, in any way. But there is really nothing that we need right now except to get home. I probably won't write again to the whole group until this transition is over. Joe and I are spiritual people, though not religious. He says he is not afraid to die, and he believes (as do I) that there is something more than this life as we know it. He and I both find comfort in that.
Joe is the most patient, kind and accepting man, who gives everyone the benefit of the doubt. He is a model for us all. And he loves you.
March 18, 2020
We met with the MD Anderson team this morning. The trial we have been waiting on is officially open, but temporarily stalled due to the COVID-19 situation. Joe needs some treatment, however, and the MDA doc wants Joe to start a drug called Selinexor while we wait on the trial (CT053) to go active. MDA has one of the 3 spots in the trial reserved for April, so the doctor says within the next few weeks we could be down here for T-cell collection. We will drive back to Austin today, continue laying low and avoiding coronavirus exposure, waiting for the call. The Selinexor will reduce all of Joe’s blood counts, so we will get very serious about avoiding outside contact. I will start seeing clients exclusively online. I’ll send another update when something changes. Thanks for all the love and prayers.
April 25, 2020
Dearest Family and Friends,
Joe passed away this morning at 11:15, one week into hospice care at home. We enjoyed seven days of present, meaningful family time, and Joe was able to make some phone calls (sorry he couldn't get through the whole list - he loved you all). He died peacefully surrounded by family. We are all okay. We don't have a firm plan for a memorial, given the restrictions on public gatherings. We will be using the emails, videos and photos people have been sending to create a slide show to share with friends far and wide. Please feel free to send something if you haven't already. There is not much more to say for now. We all knew him and loved him. He was truly a great man. A true gentleman. A devoted father and husband. A friend to all.