2016 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.
Date: Sat, Jan 23, 2016 at 9:05 PM
Hello Friends and Family -
This is the first official update on Joe's cancer situation, code name "Hassle 2.0".
Some of you already know we are at MD Anderson in Houston, but for those that don't, here is a synopsis:
Joe's Multiple Myeloma relapsed in July 2015, discovered through monthly blood work. You will recall he had a stem cell transplant in June 2013, so there were just about two years between the last transplant and this relapse. He had been taking maintenance chemo (a pill) since October 2013. When the relapse began, the doctor tried raising the dose of his maintenance chemo (a couple of times) and adding some other punches, but the maintenance drug had stopped working.
We had been under the great care of Dr. Edward Agura at Baylor's Sammons Cancer Center in Dallas since the first transplant. He supported our interest in a second opinion at MD Anderson in Houston. MDA offers clinical trials for relapsed myeloma that aren't available elsewhere. Relapsed myeloma (especially while on maintenance chemo) is a bad deal, and Joe's particular genetic version of myeloma is aggressive and high-risk. So we went for a clinical trial, keeping our Dallas doctor in the loop.
Joe became the patient of Dr. Robert Orlowski at MDA. From September to December 2015, Joe underwent a three-drug chemo protocol which substantially reduced the amount of myeloma in his bone marrow, in preparation for a second stem cell transplant (SCT). Just prior to Christmas, Joe was admitted into a Phase 1 clinical trial at MD Anderson, which adds natural killer (NK) cells from cord blood to an otherwise standard autologous SCT. The transplant doctor at MDA is Dr. M. Qazilbash. The NK trial has no more toxicity than a standard transplant, and offers some promising benefits in the way of immunotherapy, which is the latest in cancer treatment. We originally thought that Joe would be able to use his surplus stem cells from 2013, but the clinical trial requires new stem cell collection.
So here we are, in Houston, getting daily Neupogen shots to stimulate stem cell production. Eventually, the stem cells will proliferate so much that they will pour out of his bones into his peripheral blood stream where they can be collected in a process called apheresis. While collection lasted a full six days in 2013 (four days of neupogen injections and 2 days of apheresis), it will take almost three weeks this time around: a dose of chemo, 5 days of recovery, about two weeks of neupogen injections and a few-to-several days of collection. After collection is finished (around the end of January) we will head home for a few weeks, waiting for the transplant process to begin in late February.
So, for those many people who love Joe Priesnitz (and there are a lot of you), he feels tired but generally normal. When we are not at the hospital, he is working (computer/printer/box-of-papers = mobile office), and we are very fortunate to be staying in a fully-outfitted guest house, thanks to extremely generous and dear Houston friends. And, I am happy to report, the kids are alright; they are all in Austin (no one living at home), all over 21 now. Carter and Rachel are taking care of our sweet Ted (13 yr. old min-pin for those who don't know her).
The plan as we know it now (and it should be a little more stable now that we've started the collection process) is:
Stem Cell Collection (Houston): completion sometime between the last week of January and the first week of February
Return to Austin for most of February**
Hospital admission in Houston is scheduled for March 1st (transplant requires three weeks inpatient and one week outpatient)
Return to Austin at the end of March; the only times Joe should be really sick are the 2nd and 3rd weeks of March
Recover and build strength during April and into May; it will be slow-going the first few weeks, but he will recover by the end of Spring
The fact that Joe went through the MDA machine with Cindi ten+ years ago makes it all the more challenging to stay out of cynicism. We would all like to wake up from this particular bad dream, but it's just a layer of hassle on an otherwise wonderful life.
With love and gratitude,
Barbara
** For inquiring minds: Joe's official spot on the clinical trial schedule begins February 19th. That is the day that the research lab takes Joe's DNA and begins to match and develop the natural killer cells from cord blood for use in his transplant. This process apparently takes about 10 days, and must be completed before they can admit him to hospital. That's why the March 1 admission date. There is a research nurse for this clinical trial who can only take two patients per month; the trial is very lab-intensive.
PS. Joe says, "No Facebook, please." If you are receiving this email, you are on his list. Thank you xoxo
Date: Tue, Feb 16, 2016 at 7:07 PM
Dear Friends and Family -
I'm writing with updated news of Joe's treatment process. Last month I told you we were headed to Houston for a three-week stem cell collection process, in advance of the stem cell transplant / NK (natural killer) cell clinical trial set to begin Feb. 19th. Things didn't go quite as we planned....
We came to Houston in mid-January for "chemo-mobilization": a single dose of Cytoxan intended to create a "rebound" effect in stem cell production. A few days later, Joe began two weeks of daily Neupogen injections, also to stimulate stem cell production. He was then given a drug called Mozobil over four collection days, meant to make all those stem cells less "sticky" so they could more easily slip out of the bones / bone marrow into the peripheral blood stream, where they would be easy to collect.
Joe's white blood cell count did indeed shoot up as desired, but the stem cells just wouldn't be coaxed out of their hiding places. Joe collected about 200K cells per day, compared to 3.5M cells per day in 2013. After four days, collection was halted, and we were taken off the NK clinical trail. Joe needed 6M new stem cells to stay in the NK trial, and you can't just keep doing apheresis (collection) for weeks on end. So........ onto new plans.
Joe has 3.8M stem cells which were collected and frozen at Baylor in 2013, and about 800K newly collected stem cells, which he will be able to use for a different MD Anderson clinical trail. The new trial uses a 4-drug chemo combination ("Gem-Bu-Mel" + Panobinostat) to wipe out his bone marrow - and with it, the myeloma that is slowly taking over. (Reminder: myeloma is essentially malignant plasma cells in the bone marrow.) The new trial has roughly the same benefit / outcome as the NK trial, but is more toxic in terms of chemotherapy side effects. Doing a "standard" transplant (like we had in 2013) is not recommended because the benefit of an exact-repeat transplant doesn't last as long the second time around; you have to hit the cancer with some different punches.
For the last few days, we have been back and forth to Houston doing pre-testing and insurance certification for the new trial. Joe will be admitted to the hospital on Monday, Feb. 22, and chemo will begin that day. He will have a week of chemo, and then his own stem cells will be infused back into his body on March 2, which is "Day Zero" - the day of the transplant. Within a few days, Joe's white blood cell count will bottom out, and he'll feel horrible, but the team will keep him well-dosed with whatever helps. His transplanted stem cells will magically (!) find their way from his blood stream back into his bones and they will re-colonize or "engraft", producing new white blood cells by around ten days after transplant. Over the next two weeks, his blood cell counts will increase, and he should be released from the hospital around the end of March.
Schedule Overview:
Feb 15 - 21: Testing / Certification
Feb 22: Hospital Admission
Feb 22-29: Chemo
March 2: Transplant
March 3-24: Inpatient Recovery
Once released from the Hospital, there will be one more outpatient week in Houston, then HOME around the beginning of April.
If you want to send him a note or a card, please use this address until the end of March:
Joe Priesnitz
PO Box 27095
Houston, TX 77227
You are all loved and appreciated!!
Barbara and Joe
PS. Joe still says, "No Facebook, please."
BONUS CONTENT: THANK A PSYCHIC
Some of you may not know how Joe was originally diagnosed. It's an interesting story and I'm bored, frankly, sitting in this hospital room while Joe gets a 12-hour dosing sensitivity test today. So you get a story. Copeland was a freshman at the University of Houston in early February 2013. She and some girlfriends were driving down Westheimer when one of the girls spotted a neon palm blinking in a first-floor window of an old brick four-plex. This is the part of Westheimer, in Montrose, filled with tattoo parlors and vintage clothing stores - and psychics. Copeland mentioned how she had never seen a psychic, and her friend said, "Oh, you have have to! I'll pay for it - it's only ten dollars!" So in they went.
When Copeland called later that day, Joe and I were sitting in the kitchen, having just finished dinner. We were pleasantly surprised to get her call, as we usually had to hound her for days just to check-in; we put her on speaker. She very excitedly explained how she'd seen a "real psychic!" and had learned she would meet a tall, handsome man and they would marry and have three children, and he would be a lawyer, but a public defender, and she would have a career and make a lot of money. We said "wow!" as I recall, and were smiling at each other, knowingly, enjoying her youthful - if silly - energy. Then she asked, "Dad, do you have high cholesterol?" Joe looked at me quizzically and answered her, "No, I don't have high cholesterol." "Well the psychic asked me if you did, and I told her I didn't think so, and she said something is wrong with your blood and you need to see a doctor." Joe and I both looked at each other in a shared sense of oddness, as Copeland began asking lots of questions about whether Joe had been to the doctor recently and when was the last time and would he please go.... Joe very sweetly admitted it had been a while - a couple of years - since he had been for a full check-up, and he was due to go. She made him promise. I was impressed that he didn't dismiss her entirely, but rather humored her psychic-fueled concern for him, knowing that he truly was due for a check up. He had recently gone for a colonoscopy, and had seen various other doctors when needed, but as he was generally healthy and didn't take any regular meds save Nexium, he hadn't had regular blood work in a while. He made the appointment the next day, knowing that she would check back with him; after all, he promised!
His GP called in orders for blood work in advance of their meeting, and called Joe again when he got the results, before their scheduled appointment. He said, "your blood counts are low, across the board, and you need to go see a hematologist, and I made the appointment for you." This is how Joe originally got to Texas Oncology, which tested his blood again, and then biopsied his bone marrow, finally diagnosing him with Stage 3 Multiple Myeloma. There are only 3 stages in Myleoma. They told us Joe's marrow was 90% malignant plasma cells. We couldn't have been more shocked, especially since he was essentially asymptomatic. He had low red blood cells, white blood cells and platelets - low across the board. Joe felt some fatigue but had attributed it to getting older!
I did go visit that psychic in the Fall of that year, after Joe's first stem cell transplant; I wanted to see her for myself, and I wanted to thank her. I found the building Copeland had described, and knocked on the door; appointments were not required. I found a short, round, bare-foot, chain-smoking, middle-aged woman in a blue chiffon dress, and I purchased her most expensive reading for forty dollars. There was nothing particularly "psychic" sounding about her reading for me, but it was interesting. Afterwards, I told her about Copeland and Joe and his diagnosis and treatment. "If it weren't for you, he might not be alive today, and I want to thank you." She didn't ever look at me as she took a drag from her cigarette, patted my leg twice and said, "Honey, I just say what Jesus tells me." And then she opened her apartment door for me to leave, and thanked me for stopping by.
The morals of the story: get a check-up every year, and remember that the world is full of weird and wonderful mysteries that we will never understand.
Date: Wed, Mar 2, 2016 at 12:13 PM
Dear Friends and Family,
I am happy to report that Joe is receiving his transplant today! He was admitted to the hospital at MD Anderson in Houston on February 22nd, and received high-dose chemotherapy for eight days. Yesterday was a day of "rest" and today is "day zero", the day he is infused with his own stem cells which had been previously collected and frozen.
The graph below helps explain the process. The blue lines represent Joe's protocol (myeloablative). The "Chemo Conditioning" phase is the week of high-dose chemo we just completed, and the first blue line shows the intentional depletion of Joe's blood cells. On "day zero" (today) Joe receives an infusion of his previously-frozen stem cells; this is "the transplant". It is rather anti-climactic. They give a dose of benadryl to prevent reactions to the preservative used in freezing the cells, then defrost the small bags of frozen cells in a lukewarm bath, and infuse them into his blood stream through his port. Then we wait a couple of weeks for the cells to do their job. The second blue line shows the rise in blood counts that represents successful "engraftment", when the infused stem cells will have found their way back inside the bone marrow and started making new blood cells. By the third week post-transplant, he should have normal blood counts and we get to go home.
On a more personal note, Joe has been in pretty good spirits, although he says this whole thing is "like watching paint dry". He has been walking a mile every day (five laps around the 17th floor), and reads the paper during breakfast (see pic below, taken this morning). He has even been working a bit. All of this, I believe, helps him feel like himself, which is ultimately a most comforting feeling. He has been sick in predictable ways each day, but the nursing staff is attentive and responsive (and I am here to fill in any gaps). Joe will become a little weaker and sicker over the next two weeks, and then will begin to improve steadily.
Thank you for the love, cards and prayers. They're working!
Much love,
Barbara (and Joe)
Date: March 10, 2016 at 5:28:31 PM CST
Dear Friends and Family,
Joe has turned the corner, and today (Day +8) showed a measurable (if small) white blood cell count, which means his transplanted stem cells have engrafted and starting producing new blood cells. This is the news we have been waiting for!
He has been (in his words) "weak as a kitten and fevered". There have been various issues, as expected when your immune system has been wiped out, with subsequent antibiotics, anti-viral, anti-fungal, blood pressure weirdness, loss of taste and appetite, fluctuating body temperature and general gawd-awful malaise. Not pretty.
Last night I dreamt twice that his white blood cell count had come up. In the first dream, it was miraculously at 11.0, which was so impossible that I knew immediately I was dreaming. Later I dreamt it was 4.1 and, remembering, in the dream, that I had earlier dreamed something implausible, wondered if this could be real, of if I was dreaming again. I was dreaming. The count this morning was 0.1.
Tomorrow, the count will most likely go up again, and continue to increase every day thereafter. When his ANC (absolute neutrophil count - a subset of the overall white blood cell count) is 0.5 for three days in a row, we can leave the hospital. That should be a week or two from now.
We are passing the hours watching Ken Burns' The Roosevelts; we had seen it before, but it never gets old. (And we are reminded how little has changed in the world of politics.) We also enjoyed visits from Carter, Eric J. and my brother Jimmy, and look forward to a return visit by Carter (with Enzo in tow) this weekend.
Thank you again for the prayers, cards and love. I'll send another update when we are getting out of here!
Love,
Barbara (and Joe)
Date: March 20, 2016 at 10:51 PM CST
Dear Friends and Family -
Today is Day +18 and Joe is recovering beautifully.
He was released from the hospital on Monday, March 14th, and we spent the week in Houston at the guest house of dear and generous friends. We returned to MD Anderson for blood work and check-ups on Tuesday and Thursday, and Joe's blood counts were so good that we were given three days off, to return Monday the 22nd, as long as he stayed well.
He was supposed to stay well in Houston, but we decided to sneak back to Austin for the weekend (rebels that we both are). It has been very healing to sleep in our own bed and share meals with all of the kids. We even celebrated Enzo's birthday last night (he'll be 24 tomorrow).
This morning, Joe has eaten breakfast, had two cups of hot tea, and is reading the paper in his favorite spot. My heart is overflowing with joy at this sight.
We will head back to Houston this afternoon, and expect that he will be officially released from treatment by April 1st. We may be back and forth between Austin and Houston during these next two weeks, but there is no set schedule.
After that, Joe will be returning to the feather-weight version of his life; full recovery takes about six months. He is very weak now, but his energy improves every day. And while his immune system is up and running, it's brand new and he hasn't had his vaccinations yet (he'll have to repeat almost all of his childhood vaccinations), so he must still avoid crowds, sick people and children. Around Day +100 (in June) he will begin taking maintenance chemo, which, hopefully, will be a pill.
Thank you everyone for all of the prayers, notes, cards, emails, calls and so much love. You helped Joe get through this, and you helped me get through this.
He's still not texting or emailing much, so if you reach out, give him a week or two to reply.
💝💝💝💝💝💝💝
Barbara (and Joe)