My Stem Cell Transplant
by Marty Prager
It seems like a hundred years ago now, but in August 2006 at age 58 I was on vacation in thin pristine air of Idaho’s mountains and I was feeling as fit and as healthy as ever as I cycled down a country road with the breeze whistling past my ears. Only the timeless beauty of the area, the subject of my next landscape photograph and the thought of the dinner my wife Lynn planned for that evening circulated in my mind. The fact that I completed a routine periodic physical prior to leaving Los Angeles had been completely absent from my thoughts over the past few weeks. In the 1970s when we bought our property here, we drove two days to get here from our home in the Los Angeles area. Driving always gave us a chance to decompress slowly from the hectic workaday schedule to life in the mountains. The trip home slowed the re-entry culture shock.
My sense of reality upon my return was about to be jarred forever at my next doctor appointment.
The new abnormal.
The message that no one ever wants to receive waited for me at home; my primary care physician wanted to see me. When we met during the follow-up visit he told me that everything looked good except that my hemoglobin reading of 10.0 was significantly below the normal range of 14 to 18. He gave me a referral to a hematologist in our HMO.
Being a total neophyte at things medical, my mind reeled when I saw the sign over the door in hematology: Hematology/Oncology. Oncology… that means cancer! As I sat in the waiting room I looked around at the people there and my mind raced through the every movie scene ever put on film about people learning they had incurable diseases. I was not eased in the slightest in the exam room when the hematologist announced the only way to diagnose my condition was a bone marrow biopsy (BMB). Biopsy…another word that to me meant cancer and premature death. I was terrified and I had not even been told what a BMB was.
In a few minutes I clenched my fists in pain laying face down as the doctor commented that the marrow from my hip was so dry that he could withdraw very little; certainly more information than I needed at that point. I was sore and stunned and yet more events would unfold quickly. By the way, this was by far the worst bone marrow biopsy I was ever to have.
The bad news.
A few weeks later the doctor’s assistant called me at work and said the doctor wanted to see me. I asked if I could just be told over the phone and the assistant said no because doctors always want to give this kind of news in person. I instantly hated this person. I felt like a piece of live meat on a hook just waiting to be drawn and quartered.
When the hematologist entered the exam room I could read his face like a book. Like some corny B-movie character I asked for him to “…give it to me straight”. He backed away from me as far as he could in that small room and said I had myelofibrosis. Before I could even ask how to spell that, he said it was very rare and I had three to five years to live. “I’m sorry,” he said, “there is no cure. Maybe thalidomide or bone marrow transplant.”
He left the room as silently as he had entered. My worst nightmare had come true and it was delivered to me by the worst doctor I had ever encountered who had an assistant I hated. The drive home to the empty house was a journey I never wish to repeat.
Coincidentally my wife Lynn and her mother returned home from Idaho that day about 3 hours later. We said our greetings and did our hugs and then Lynn took her mother home. When she returned in a couple of hours her first words to me when she returned were “What’s wrong?” We sat on the edge of the bed and I explained.
We hugged for what seemed like an hour and strangely I don’t remember either of us crying uncontrollably; just some sobs that reassured me and underscored the “…in sickness and health…” commitment of our 40 year marriage. From that point forward I felt I could deal with this somehow. I switched on the computer and began to get frightened all over again. As I searched the web more, mixed within the standard textbook definitions of the disease I eventually found the CMPD Education Foundation web site. I started reading and strangely I felt better. Joyce Niblack’s story and the on-going interchange between members assured me that I was not alone and that others were successfully getting on with their lives. There was some hope.
Things get a little better.
The next few months I was in “watchful waiting” and getting no treatments. Time went by quickly as I read more and more and started making plans. Joyce’s admonition to be your own advocate inspired me to get a different doctor in our HMO, Kaiser Permanente (“Kaiser”). This was a seminal decision! The new hematologist was very personable and sympathetic and not resigned to watchful waiting. As my hemoglobin dropped a little more, I received a red blood cell transfusion – the first of many. He also put me on a regimen of Procrit injections that I was to give to myself. This helped me feel a little better but didn’t have a lasting effect on my blood counts that continued to drop.
The hematologist also referred me to the Kaiser Bone Marrow Transplant (“BMT”) department to see if I might be a good candidate for a bone marrow transplant. I met some extremely knowledgeable and caring doctors and nurses. I don’t recall leaving with a clear understanding of the proposed treatment but they would search the donor banks to see if there was a matching bone marrow donor for me. It was clear, however, that BMT was a risky procedure.
In a follow-up visit we learned they had located five donors that were 7 out of 12 matches for me. Although this is a reasonable match I didn’t understand exactly what it meant in terms of success (life) or failure (death) and my gut instinct told me to pass on it for now. The staff was very cordial and we agreed to meet again in a year or so after my sibling and children were tested and the possible emergence of more donors.
Another decision I made was to attend the CMPD Foundation conference in Scottsdale in February 2007. Here I learned what I should have known about the transplant procedure before that visit with the bone marrow transplant doctors! I also learned about an applicable clinical trial that was to start soon managed by Dr. Srdan Verstovsek of MD Anderson Cancer Center. I was elated when Dr. Verstovsek told me that I should come to Houston for evaluation.
The red blood cell transfusions continued during the spring of 2007. Procrit was not benefiting me so the hematologist stopped it. In June 2007 the clinical trial start date in Houston was announced. I was to be evaluated for a few days there and hopefully be put on the drug. Everything went as planned and the drug, called CEP-701, started working within a month. My counts were going up and Dr. Verstovsek smiled every time I showed up in Houston for a checkup. I didn’t need transfusions any more and the future looked very bright. By the way, every checkup in Houston required a BMB that was performed by very skilled people and caused little pain. Over the course of the trial I had about 12 BMBs and none were as painful as that first one in 2006.
I continued the clinical trial until the drug stopped working for me in July 2009 when my counts started dropping again and it was back to transfusion dependency. By November of 2009 my hematologist decided it was time to seriously look at transplant.
Time to think about transplant.
Over the course of two years since the last visit to the Kaiser BMT department a few things changed. A new donor had joined the national registry and our match was 12 out of 12!! This was a one in five thousand probability. With this incredible match and a little encouragement from the doctor, I enthusiastically said yes (with Lynn’s blessing) and the process was launched.
A few words about the process and the terminology are in order. Officially the procedure is a bone marrow transplant meaning that a donor’s marrow is transplanted into the patient after the patient’s bone marrow is wiped out by chemotherapy and/or radiation. In practice, however, stem cells (which are the cells that can create marrow) from the donor’s marrow are filtered from the donor’s blood stream where they are collected, tested, counted and then infused (“transplanted”) into the recipient’s blood stream where they magically proceed to the bone cavities throughout the body and start making new marrow. Technically it is a bone marrow transplant (BMT) but the actual material transplanted is stem cells only, thus it is generally called a stem cell transplant (SCT) these days.
The process begins.
Both the anonymous donor and I began extensive testing to be sure he and his 26 year old physiology (this much I knew) could safely provide stem cells and I had no conditions in other organs that would put me at a higher than nominal risk. My testing proceeded on and off over 3 weeks during the holiday season of 2009. I remember the two tests that I dreaded the most: the lung capacity test and the treadmill. Neither was easy due to my low hemoglobin condition but neither did I need to prove that I was Superman. After three weeks of testing, I was approved for the SCT and so was the donor. My conditioning was to start in early January. Here in the Los Angeles area, Kaiser joins forces with City of Hope (COH), a comprehensive cancer center, to perform the SCT. My Kaiser BMT doctor would manage my care but the in-patient nursing care would be provided atCOH.
My conditioning, which started on Day -8 (8 days before transplant), consisted of one dose of Fludarabine every day for 5 days followed by one dose of Melphalan after admission.
Talk about another seminal moment in my story. I’m sitting in the COH clinic waiting for the first infusion of Fludarabine and I’m thinking a couple of things. First, my life is about to change forever. There is no going back after they infuse me with this chemotherapy drug. The second thing I was thinking about was the Jerry Seinfeld TV show episode where he is obsessing about vomiting (for some reason that I’ve forgotten) that would break his record of not vomiting for 30 years. Probably the only thing I ever had in common with Jerry Seinfeld. I thought back to those days in the infusion center at Kaiser when I was getting the blood transfusions. There were many chemotherapy patients with me in the infusion center and some were so very sick as soon as the chemo was infused. I waited… The drug went into my vein and I waited… No burning, no nausea, no nothing!
On Day -5 (the fourth Fludarabine infusion), a PICC line was inserted in a vein in my left arm. I didn’t know what to expect with this procedure. The books that I had read all talked about a Hickman Catheter surgically implanted in my chest. I was very relieved to find out how simple the PICC line procedure was and how much easier infusions would be going forward.
Finally the big day arrived; I was admitted to COH on Day -3 after five Fludarabine infusionsto receive my first infusion of
Melphalan. The big “M”. The fear of nausea returned having been warned that this is very strong chemotherapy and again those anti-nausea drugs somehow saved the day. After the Melphalan, I wondered to myself what it would be like with my bone marrow and my blood counts in a state of freefall with the finest physicians in the business monitoring me. Could they bring me back if things went bad? Would the SCT be successful? Would the plane carrying my stem cells from wherever crash or be grounded due to weather? My mind was worrying and racing in an endless loop during those two days of “rest” before the transplant!
After two days of rest and getting used to my new private room (for isolation purposes), the big moment arrived on Wednesday January 27, 2010 at 2 AM. Day 0 was here and the stem cell infusion began. There was no swelling music or dramatic dialog from a team of
doctors concentrating on the patient under bright lights in a surgical theater. Just me and a nurse watching this slushy looking pinkish-red stuff flowing through the PICC line into my body. Incredibly anti-climactic. The cells are so delicate, they are infused in by gravity rather than being pumped. It took 2 ½ hours. I think I slept through some of it. January 27 was proclaimed as my new birthday by the nurses.
Recovery starts on Day 0.
In the first few days I was feeling weak due to low blood counts even though I was eating well (despite weird food tastes due to the chemotherapy). All food was from the hospital’s low bacteria menu to reduce the possibility of infection. A low bacteria diet consists of food that is freshly cooked and eaten right away. My favorite early on was turkey burgers. Even the pickles on the turkey burger were grilled to reduce bacteria. Unfortunately cooked food from home and restaurant food was sadly off limits. Certain foods had begun to have strange metallic flavors. Beef was particularly bad. Bacon was so-so.
To avoid muscle atrophy, physical therapists taught me simple exercises to do in the room. In reality I didn’t spend much time in bed. There was a nice chair to sit in. And then there were all those trips to my private bathroom. With those IV’s connected pumping all of those fluids into me, I was making many trips to the “branch office” day and night. This was made a bit more difficult because I had to bring Igor (as my wife had named the IV stand) with me which meant first unplugging the power cord.
Almost every day my wife Lynn would visit me and that was a wonderful break in the monotony. Other times family and friends would drop by or call. I found that having my laptop computer and internet connectivity helped me stay in touch and keep a journal of events. Speaking of events,COH is the official charity of the Los Angeles Dodgers and while I was there Dodger legend Tommy Davis stopped by and visited me. We had a nice chat about the incredible Dodger team he played on and he left some Dodger gifts. What a wonderful surprise that was.
I was extremely fortunate to have virtually no pain throughout the entire hospital stay except for two self-inflicted incidents. Early on I woke up one morning and found that I bit my lower lip during the night. I can only guess that my mouth was a bit swollen due the IV fluids. This sounds humorous now but it was very painful at the time. With my blood counts so low, I had no means of fighting off infection or stopping the bleeding so the doctors were very concerned. It didn’t heal quickly but I found that an ice pack worked better on the pain that Tylenol or Vicodin and a platelet transfusion took care of the bleeding. The other incident occurred one night on my way to the branch office; I kicked the bed frame. There wasn’t much that could be done and apparently my toe wasn’t broken so I just toughed that one out.
Showering was encouraged but was a bit of a struggle at first since the PICC line dressing had to be kept dry. I was limited to a 1 hour disconnection from Igor. We tried a hilarious contraption that appeared to come from the early 20th century or maybe earlier. It was an inflatable rubber sleeve that went over my upper arm to cover the PICC line dressing and then was inflated with a rubber bulb by hand to make a watertight seal. As it happened, the air would quickly leak out so I would spend as much time pumping it up as I did washing in the shower. Later when I was at home recovering, I determined that a few wraps of plastic wrap used as a waterproof bandage with a rubber band at top and bottom of the wrap worked just fine.
During the days following the stem cell infusion awaiting engraftment, my hemoglobin and platelet counts were very low. White blood cells, the body’s infection and disease fighters, can only be made by the new marrow. Each hospital has its own lower limit triggers for red blood cell or platelet transfusions. I received three or four units of both red blood cells and platelets while in COH; totally painless thanks to the PICC line. A side benefit of transfusion is the requisite Benadryl tablets which made me very drowsy, enabling me to get some much needed rest.
And so it went on. Three times daily nurses measured and recorded my blood counts and vital signs and replaced IV bags as they became empty. They gave me a copy of every lab report so I could follow my progress. Strangely, I never was too concerned about my isolation. To the contrary it seemed that friendly people came in and out of the room all the time. Almost all were concerned about my health and always had a pleasant word to share. When I heard someone scrubbing up at the sink outside my room I knew a visit was imminent.
Something lost and something gained on Day +10.
When I woke up on the morning of Day +10, my pillow looked as if a large hairy dog had slept and shed on it. My hair was falling out! I didn’t have much hair to begin with and I knew to expect this, but it had taken so long to happen that I though I might have dodged the bullet; it was still a shock. The nurse came in, recognized the situation immediately and returned with a barber’s haircutter. The rest of my cranial hair was gone in minutes. Problem solved – I had a shaved head. Strangely, other hair thinned out quite a bit but didn’t fall out completely. My beard didn’t grow for many months; that was not hard to take. When my cranial hair did finally come back and my beard started to grow, the color was charcoal gray not my usual dishwater blond with streaks of light gray “maturity”. Eventually after many months everything was back to normal.
More importantly, at about Day +10, my doctor told me that stem cell engraftment had occurred explaining why my white blood cell counts were going up on their own. This was a major milestone and a big relief to everyone including me! Based on my speedy recovery, I received the name Rambo from my doctor. A good friend had a baseball cap made for me with that famous name. It remains to this day a tangible reminder of the times.
Out of the box.
Finally after about 12 days, I could leave my room, in my Rambo hat, a robe, a mask and, of course, pulling Igor around the hospital corridors. This allowed me to get some real exercise and to see visitors in the Sky Lounge on our floor which was a nice break from my room with its one chair. The hallways were congested with the other transplant patients. For a guy who previously walked 3 to 4 miles vigorously twice a week I struggled to make it two loops around our floor, totaling about ¼ mile on that first outing. The doctor said this would have to increase to 1 mile for me to be discharged. The gauntlet had been thrown down as they used to say in the olden days. I would have to work at this with all my energy. The exertion also helped me sleep more soundly. I eschewed sleeping pills during my entire stay choosing to try meditation, reading or music if I was sleepless.
By Day +16 my sense of taste began to return a bit. Chocolate, maple syrup, peppermint tasted good. Berry and orange flavors were tasty also. Peanut butter, cheesy and tomato flavors remained totally tasteless. Chocolate chip pancakes from the kids menu became my new favorite food. I’ve always been a breakfast kind of guy.
Due to my progress, Lynn and others worked hard at home scrubbing and cleaning everything I might come in contact with as the danger of infection from the environment and food would be high until about Day +100. She arranged for the carpets to be cleaned, boarded our Dalmatian dog, Dottie, and removed all of the house plants according to various recommendations we had received. Seemingly in response to the completion of all of these preparations, my doctor announced on Day +19 that my discharge day would be the next day!
On Day +20, February 16, 2010 I gathered my stuff and, wearing the same clothes I wore on check in 23 days earlier, walked out of COH on my own steam – in my hat, face mask and latex gloves.
The drive home was surreal – the noise, the motion, the moving scenery surrounding me, the freedom, the fresh air! Home never looked so good when we arrived. Even though it was only late afternoon, I was exhausted from the cumulative lack of sleep, the excitement and effort of gathering up accumulated stuff at COH. I laid down on the bed and I was out until the next day.
The next days and weeks evolved into a regular routine of visitors, daily cleaning of the PICC line, twice weekly trips to clinic at COH, the continuing exercise and of course taking lots of pills and liquid medicines.
Day +30 was a memorable milestone. My doctor performed a BMB to get a first hand test of the amount of engraftment. The results came back in a few days. TheDNA in my marrow measured 99% donor indicating a strong engraftment.
The “kids” complain and some GVHD.
Due to all the medicines I took in this time period, my blood creatinine level, a metric of kidney function, was increasing too and this was a bad thing. We managed to wrestle the counts downward with a change in meds and drinking large quantities of water. To this day my creatinine level is just slightly higher than normal and will always be something to watch. It was also in this time period that my doctor induced a small amount of graft versus host disease (GVHD) to kill off any remaining cancer cells by reducing a particular medicine in a controlled way. Think of it as a fireman starting a backfire on a hillside to reduce undesirable material. GVHD results from the new white blood cells attacking the patient’s body. It can range from minor to life threatening
Who is that masked man?
Since our home was a fairly isolated environment Lynn and I didn’t wear masks at home. Visitors did need to scrub up and wear masks when they visited. When I went out I wore a mask and latex gloves. On my gradually lengthening walks I was fully decked out in a green face mask, dark glasses, Rambo baseball cap and green or purple latex gloves. I wish I had taken a picture of this get up. Probably scared a few neighbors and their dogs.
The new normal.
The most lingering effect of the transplant is fatigue, which affects everyone differently. In my case I felt fatigue-free most of the time but there were times that the feeling of fatigue was overwhelming. It’s hard to convey except it was usually not something remedied by resting. In fact most of the time I found the converse to be true. I had to find the motivation to get up and do something to make me forget about the fatigue to make it pass. This was not easy. Over time these feelings of overwhelming fatigue occur less and less frequently.
I can’t wait to be 100.
Time passed fairly quickly as I headed for Day +100. For the big day we planned a small gathering of family and close friends to have In-N-Out burgers, a favorite local fast food, to celebrate the end of my low bacteria food restrictions. Due to my strong complication-free recovery, after Day +100 the clinic visits gradually became farther apart easing the driving for Lynn. Eventually I was allowed to drive. My doctor agreed that it was OK for our Dalmatian dog, Dottie, to be in the house again.
The new normal part 2.
At 10 months post transplant I returned to work for about 3 months. Between the stress of rush hour driving and jumping into a work schedule, I didn’t feel that I was doing right by the company or myself (even though I enjoyed the work and especially the people I worked with) so I decided to take an early retirement in January 2011. It was about this time that my donor and I were allowed to authorize communication between us; both had to agree. We both elected to communicate. Names, addresses and emails were soon exchanged and we even did a video call over the internet. We both agreed to meet if we ever planned to be in the same geographical area and we further agreed to stay in touch over the years. As is usually the case, we have very little in common except our stem cells, but I am very glad to know who voluntarily saved my life.
Later in April 2011 COH held its annual reunion of transplant patients. I don’t know how long this celebration has been held but it was quite a party – thousands of people. All patients get a large blue and white button proudly displaying the number of years since transplant. Doctors and patients mingle along with some COH officials and invited celebrities. In 2011 the show had a double head liner. COH announced that their 10,000th transplant patient in 35 years of performing the procedure was in the audience. Then a 35 year transplant survivor stood up in the audience and took a bow to a huge roar of applause.
Always fall forward.
From the perspective of being 19 months post transplant now, I’m not sure I’ll be trotted out as a 35 year survivor at age 97 but you can be sure that I’ll be doing several things everyday:
● Enjoying life to the fullest making every minute count in some way;
● Getting exercise and eating right;
● Marveling at the stem cell transplant process along with the entire medical community that makes it possible;
● Remembering all of those that supported me through the process;
● Thanking Jerry Seinfeld for his inspiration just when I needed it.
Author’s note: Like any medical procedure, SCT outcomes cover the full spectrum because there are so many variables. I believe my outcome is not atypical but I do believe my experiences during the process were on the uneventful side of normal expectations. As they say, your mileage will vary.
© Martin Prager and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Martin Prager and MPNforum.com with appropriate and specific direction to the original content.