2018 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.
February 2018​
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It has been two years since my last email "update on Joe", following his 2016 bone marrow transplant. A lot has happened since then, and a lot is happening now.
Joe has been on two different chemo / immunotherapy protocols since his second bone marrow transplant in March, 2016. The first one stopped working last Summer (2017). We went to Europe in July, and began a new protocol upon our return. Then the new protocol started to fail a few months later, in December, 2017. (Also, Joe had a serious pulmonary embolism on Dec. 22nd and we spent this past Christmas in the hospital...but that's much better now, except for the twice daily blood-thinner injections...)
On February 14, 2018, we met with our Myeloma specialist, Dr. Robert Orlowski, Director of Myeloma at MD Anderson in Houston, who presented us with options, which mostly focused on buying more time until Joe can get into a clinical trial. He will therefore start a new chemo protocol in the next week or two (the third one following the 2016 transplant), which will hopefully work for a few months or more. If it does, great. If it doesn't, we will know within one month, and Joe could probably get into the trial at MDA in April. At this stage in Joe's course of Myeloma, there are no more chemo or immunotherapy treatments available that are expected to work for long; his cancer has effectively figured out how to beat the existing classes of drugs.
That's why the clinical trial is where we find real hope. The type of trial he will join sooner or later this year is called CAR-T (chimeric antigen receptor T-cells) which has received a lot of press recently. It has a 50% remission rate, which is very good for relapsing disease that has stopped responding to available treatments. Some of the myeloma patients who have participated in the CAR-T trials around the country are still in remission two years later; this is the most promising news in Myeloma treatment (and many other cancers) in recent years.
There are some serious risks, as with anything. CAR-T creates an army of specially-programmed T-cells. The drug manufacturer, working with the hospital team, withdraw some blood and isolate the T-cells (a subtype of white blood cell) and engineer them with a deactivated virus to attack only certain targets - in Joe's case, "BCMA", a protein that is only found on plasma cells, both healthy and malignant. (Myeloma is cancer of the plasma cells.) They put these new, souped-up cells back in the body, where they go on the attack. Sometimes this provokes a systemic inflammatory response called Cytokine Release Syndrome or "CRS", where the immune system goes into over-drive and can cause substantial medical problems. It does affect a majority of trial participants, but rarely causes death.
Joe should begin the new chemo treatment (Carfilzomib / Bendamustine / Dexamethasone) next week, under the care and supervision of his Austin-based oncologist, Dr. Carsten Kampe. Joe has known Carsten through the music community for more than twenty years, and we feel very fortunate to have a personal friend in an esteemed local oncologist. It's also very reassuring that Dr. Kampe coordinates so well with the myeloma team at MD Anderson.
I'll post another update when there is something new to report. I am going to use this website / blog format rather than email to make it easier on myself, frankly. And hopefully it will be easy for our friends and family to keep track as well. The "sign up" caused some confusion; you do not need to sign up unless you were not on my email list in 2016. If you were getting my emails in 2016, then I have already added you to this one. There is no need to log in at all. You can also just come back to this website at any time.
So many people ask what they can do to help; the best help you can provide is through prayer, friendship, love and support. And we thank you for those great gifts, which we feel in abundance. At this point, we don't need any logistical, material or other active forms of support. But if and when we do, we will ask for it!
Finally, if you know Joe, you know that he's quite private. He doesn't want to hear about himself or his treatment on Facebook. Please honor that, and if you share this information with others, please tell them the same. You might choose to post a comment here - he will see them all. You can also send him a card at 2101 Highgrove Terrace, Austin, Texas 78703. If you want to visit or meet for dinner, send me an email at bpriesnitz@gmail.com and I'll coordinate with you! Joe is still working full time and busy as ever, FYI.
Thank you and I promise to keep you updated! All my love,
Barbara
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March 21, 2018
Joe began a new protocol this month, as described in my last update, and we just learned that it worked very well, lowering his cancer marker significantly. It is considered a “study” protocol; i.e. not a standard myeloma treatment. Because it’s non-standard, we had to deal with more insurance obstacles than ever before, and we were introduced to the confusing reality of financial risk management by the oncology practice itself, regardless of insurance approval! But ultimately (and with some wheel-squeaking) we got all the necessary nods, and Joe started treatment on March 1st.
The chemo knocked him down pretty hard for the first week, during which he bumped his shin on a chair during a nighttime trip to the bathroom. Not a crash, just a bump. Three days later there was a big goose-egg. Two days after that, the goose-egg was turning black and blue, and by the following week, it was enormous and painful. Ultimately, he had a 12 cm hematoma surgically removed on Friday, March 16th, being too thick to simply drain. They also removed quite a lot of dead skin, and sent him home with a “wound vacuum” that he’s been porting around for the last several days. It comes off tomorrow, and he will have a skin graft in the next couple of weeks.
So, while the new chemo worked nicely, Joe has to hold all treatment until his leg has a chance to heal. No chemo and no more blood thinners for at least six weeks. At that point, he may have another cycle of the same protocol he had earlier this month, or he may go straight into the clinical trial mentioned in the last update. I’ll send another update in May when we know more. Thanks as always for your love and friendship!
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Love, Barbara
May 2, 2018
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It has been a crazy few months. As I mentioned in previous notes, Joe had a serious pulmonary embolism in December, a side effect of chemotherapy. So they put him on blood thinners, which led to a large hematoma following a rather unremarkable bump against a chair. The hematoma got larger and larger until it had to be surgically removed, leaving a big hole in his right shin (about 7x10cm), which was allowed to "fill-in" for about six weeks, culminating in a skin graft (taken from his stomach) on April 25th. It's done! It worked, and to someone who's been packing an open wound for a month, it looks amazing! Otherwise it looks kind of scary, so I've been told not to share pics. But for those of you who really want to see....
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They had to hold chemo until the graft was complete, giving it a chance to heal. Now, Joe will start back on the "study" protocol, having exhausted the regular myeloma protocols. The "study" protocol is essentially an old-school mustard-gas derivative chemotherapy, which is why it wipes him out for a few days. But it did knock down his light chain count, which is Joe's primary cancer marker. The number went back up, significantly, without any treatment while he was waiting on his leg to heal. But it should work again, and he'll have it starting May 10th. That will continue until he gets into a CAR-T trial, or until it stops working, at which point he would do some other crazy poison until he gets into a CAR-T trial. It's all about getting into this trial.
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He is on two waiting lists, at MD Anderson and Vanderbilt, and we have appointments with the trial teams at both hospitals in the coming weeks. There are onboarding preliminaries, getting everything pre-arranged so that he can jump into the first trial with an open spot. These are both Phase 1 trials, but we have been told not to worry too much about the "phase 1" part since this is an immunotherapy treatment and they hopefully can't give you too many bionic T-cells to kill your cancer. I guess they could give you too few, but they are trying to get approval and make tons of money, so we trust they will give him plenty.
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MD Anderson says the soonest they would let him start is July, because they require a 6-month period without any blood clots. Vanderbilt hasn't said that, but they have 2 trials for what Joe needs, and one is suspended and one hasn't opened yet. We don't know why or when. We are asking. These treatments are very new and still considered very risky, but frankly have excellent results. This is the treatment that could give us years, and we are going for years.
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I'll write again when we know more. For now, Joe looks and feels good. He is working in his new home-office, which was extra-convenient when he was on crutches (he's off now). Thank you for the prayers and love and friendship.
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PS. Here are links to some additional information about CAR-T:
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MD Anderson profile:
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Today Show Feature:
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May 23, 2018
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We met with Dr. Orlowski in Houston today. Joe’s cancer marker has been fluctuating quite a bit, so the doctor wants to try at least one more cycle of the cocktail he’s been on most recently. In other words, there is conflicting information as to whether or not it’s working, and there is not a spot in CAR-T yet, so we stay the course another month.
We are already on CAR-T waiting lists at MDA and Vanderbilt, and Dr. Orlowski will refer us to the CAR-T programs at UT Southwestern in Dallas and Sarah Cannon in Nashville. So we will be on 4 waiting lists. Like other medical waiting lists, your condition is considered in assigning spots in the trial, so we are basically “waiting” until he is sick enough AND there is a spot in one of these trials. It's not like waiting for a bed or a chair; the trial is very lab-intensive, requiring a team of people to genetically modify your T-cells, propagate them, and send them back to the hospital for infusion. So we are waiting for a spot on the lab calendars, just in case you were wondering.
Until then, pretty much life as usual. The skin graft to his lower leg is almost all healed up (no more pics, sorry). He started back with the old-school chemo on May 10th. The first week of each monthly cycle is hard, but gets progressively better. Joe is working and eating and drinking and being Joe, so we’re okay. We will be in Nashville to meet with Vanderbilt (and hopefully Sarah Cannon) on June 11. We will return to Houston on June 20th. I’ll keep y’all posted!
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September 19, 2018
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We write with good news, although the road ahead now gets a little less predictable.
Joe has been selected for one of three currently-open spots (nationwide) in a Phase 1 clinical trial for Relapsed and Refractory Multiple Myeloma.
The trial is for a “CAR-T” treatment, which uses gene editing to modify one’s own T-cells so that they will search for and destroy a specific “target”; in Joe’s case, malignant plasma cells (myeloma).
There are a number of big-pharma companies engaged in Phase 1 testing of CAR-T therapies around the world. In the US, only three individuals can receive the Phase 1 protocol for each unique trial at any one time, as the tolerated doses, outcomes and side-effects are essentially unknown. MD Anderson is one of several major research institutions participating in several of these trials, but as you might imagine, there are many more people waiting for trial spots than there are spots available. It’s been a waiting game and a balancing act. You have to be sick enough, but not too sick. You have to relapse or fail to respond to your current treatment at just the right time, when one of these spots comes open. And there is no way to know when that will be. Joe had officially relapsed again over the last couple of months. If a spot didn't open for us soon, we would have to try another chemotherapy.
We got the call on Friday, 9/14, letting us know that Joe had been selected by KITE Pharmaceuticals for their KITE 585, Anti-BCMA CAR-T trial, pending insurance approval (for outpatient/inpatient care during the treatment) and screening tests. It felt like hitting a jackpot. We hope time will prove that we did hit a jackpot!
Today, 9/19, we drove to Houston for three days of screening tests to certify that Joe is healthy enough for this trial. He’ll have a brain MRI , a PET scan, bone marrow biopsy, echocardiogram and EKG, and of course blood work. If he passes all of these, we will return next week for Leukapheresis, which is collection of T-cells from his peripheral blood. We think he will have a central venous catheter placed for this procedure, but we are not sure yet.
His T-cells will be sent to the pharmaceutical company lab where they will be genetically modified to target “BCMA” or B-cell maturation antigen, which is a protein expressed on plasma cells. The lab process will take 4-6 weeks, which includes time for propagating large numbers of the modified CAR-T cells. Then we will go back to Houston, probably around the end of October, for three days of “conditioning chemotherapy” which is designed to reduce, but not wipe out, his own immune system, followed by infusion of the CAR-T cells.
He will be hospitalized for at least 5 days following infusion, to monitor and manage any side-effects. These are likely to involve flu-like symptoms (nausea, fever, chills), blood pressure, heart rate, etc. This part of the trial is frequently referred to as “The Storm” for the severe immune-response symptoms that can come with Cytokine Release Syndrome. There have not been any fatalities on the particular trial he is joining.
Then we’ll go home and expect Joe to remain cancer-free for a long time! The average “progression-free” duration for participants across all CAR-T trials (so far) is eleven months. But many of the people who have completed CAR-T trials are still in remission at 2 years. We are expecting the best.
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Joe will need immunoglobulin infusions periodically, but he will not need maintenance chemo as long as he remains in remission. This is the promise of immunotherapy. Without chemo, there is no toxicity. Without the toxicity, there are fewer complications, secondary cancers and general hits to your quality of life. Some oncologists say that CAR-T will be the Standard of Care in the future.
The big promise is for newly-diagnosed people, who will eventually be able to have this type of treatment first-thing. In that situation, the researchers are hoping for a true cure, harnessing the immune system to identify and destroy specific cancers. But this is still very new, and the “target” proteins they can train the CAR-T cells to attack also occur on healthy cells, so you can see there are plenty of details to work out.
For now, we are assuming that this process will unfold as it should. I will send another update when the process is complete. Thanks in advance for your prayers and support!
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September 20, 2018
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We lost the spot in the trial yesterday, because the insurance couldn't finalize the approval fast enough. We expect to get it finalized soon, and it will be good for 6 months, kind of like pre-qualifying to buy a house.... So now we head home and wait. Joe is at the top of the list at MDA and they assure us that more spots will open this calendar year.
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October 19, 2018
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Joe is officially in a trial! After the ups and downs of the past month, we were guardedly hopeful about the next offer we received, last week, for CAR-T at MD Anderson. We went to Houston for extensive testing earlier this week, and we learned that besides Myeloma, there is basically nothing wrong with Joe! It's very nerve-racking to have close-up looks at EVERYTHING, including a brain MRI and full-body PET scan, on top of the regular bloodwork and bone marrow biopsies. But they didn't find anything new, and Joe is officially in the trial. He is scheduled for T-cell collection on October 30th. The process is very similar to stem-cell collection, and while it takes several hours, it's painless and easy. On the 30th, a courier will come to take the cells to a lab in Seattle, where they will "expand" them, growing millions of Joe's T-cells. Then they go to a lab in San Diego where the cells will be "trained" to attack a protein on the surface of Joe's cancer cells, using processes that seem like pure science-fiction.
The expansion and training can take anywhere from 3-12 weeks, after which we will be called back to Houston (with little advance-notice) for about 12 days, during which Joe will get some serious chemo (but not as much as in a transplant) followed by infusion of the souped-up cells. There will be 7 days of hospitalization, and then we get back to our regular life, and expect amazing results. We are both feeling great about this, and even grateful that we are on this trial (Poseida Therapeutics CAR-T) and not the trial we almost joined last month, because the Poseida trial doesn't use a virus to modify the T-cells, and the results so far have been very good with fewer complications. So I won't write again until after Joe has the new cells infused, which will likely be after the first of the year. Until then, he will get "bridge" chemotherapy, keeping the cancer as stable as possible until the cells are ready. Thanks for all the love, prayers and friendship. I'll keep you posted. XO
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November 16, 2018
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We received word today that Joe's CAR-T cells have been expanding nicely and will be ready for infusion on December 11th. We have to be in Houston starting December 5th, for labs and a 3-day chemotherapy "conditioning" regimen which will be ugly, but not as ugly as the 7-days of chemo he's had before transplants. His hair will still fall out, but we won't be scraping him up off the tracks, like we've had to do before. He will be hospitalized for the infusion, and a week or two following, but mostly for observation and management of immune-response symptoms. His CAR-T cells will be on a rampage in his body, killing cancer, but causing some havoc in the process. We will be released somewhere between the 18th and 24th of December. What a Christmas present! I will write again when the procedure is complete. Happy Thanksgiving everyone! We all have so much to be thankful for!
December 10, 2018
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Well.... there have been a few changes. We were supposed to head to Houston last Wednesday, December 5th, to start the three-week process of receiving the CAR-T infusion at MD Anderson. On Monday evening, December 3rd, we got an email letting us know that Joe's cells had "stopped expanding" and the infusion was cancelled. They wanted to him to come on Wednesday to discuss next-steps with the doctor.
We learned that Joe may be able to try again with the CAR-T trial, but that he would need to wait 3-4 months before collecting T-cells again. The doctors believe that the chemo he took earlier this year, Bendamustine (a mustard-gas derivative / alkylating agent) is the cause of the failed cell expansion. In a few months, they hope it will be more fully out of his system, and we hope we'll get to try again at that time.
In the meantime, Joe will get chemo here in Austin, repeats of drugs he's had before, but in different combinations; we hope that will keep things in check - at least enough to get safely to the next clinical trial. This has been an emotional roller coaster, as one doctor put it, but we are looking forward to being home for the holidays this year, and to a healthy and productive 2019. Thanks as always for the prayers, love and friendship.