Stem Cell Transplants (by a Dummy, for Dummies) – Part 1
The relatively standard treatment for multiple myeloma patients is an induction therapy of Revlimid, Velcade and dexamethasone, followed up by a stem cell transplant if the patient is healthy and young enough.
When I first heard of stem cell transplants, I thought, “oh, cool, high-tech and cutting edge,” what with stem cells being the news so often the past decade. I didn’t even bother looking into the details, because I focused entirely, at least initially, on my induction therapy. I felt the need to compartmentalize my treatment, focusing on one step at a time and the variables I could exert some degree of control over.
As I progressed through treatment and a stem cell transplant became the obvious next step, I started looking more into it. It was then when I learned what a stem cell transplant was and what I would go through.
For blood and marrow cancer therapies, there are two different types of stem cell transplants. An autologous stem cell transplant is one where the patient’s own stem cells are first taken, stored and then transplanted back into the patient’s body after heavy doses of chemotherapy. No donor cells are required. An allogeneic stem cell transplant, on the other hand, requires a donor’s healthy stem cells be transplanted into the cancer patient after the patient first undergoes intensive chemotherapy or radiation therapy.
With my multiple myeloma, I underwent an autologous stem cell transplant, thankfully not needing a donor and all that goes with that, in particular any necessity for my family to undergo testing and the like.
A process, not a day
A stem cell transplant is a process, not a day. The actual transplantation of my cells back into my body was, in fact, a rather anti-climatic 15 minutes or so, but there was so much more packed into the before and after, and that was my real learning.
The transplant process is broken down into the following distinct phases:
- Mobilization
- Apheresis
- Preparative regimen
- Transplant/Stem cell infusion
- Recovery of blood counts
This blog post, part one, will take us through my experiences up to “halftime,” the completion of Mobilization and Apheresis.
Mobilization
To receive your own stem cells back, you first must get them collected, and that process starts with “mobilization.” You see, most stem cells lie back in your bone marrow, doing their jobs from the safety and security of home. And, believe me, patients most certainly don’t want their stem cells harvested from their bone marrow. That would require hundreds of bone marrow biopsies – I can’t imagine a hell worse than that.
Rather, mobilization is a phase that coaxes the stem cells into the bloodstream, where they can be skimmed off and stored for later use. For me, that meant a mean dose of chemotherapy and then a daily series of growth factor injections until I had enough stem cells in my blood to harvest.
But, first, I needed an easy way to gain access to my blood, both for blood draws for testing as well as the easy administration of medicines. Thus, after all my pre-procedure tests had been done – chest x-ray, extensive blood testing and profiling, urinalysis, etc. – I had a Hickman catheter implanted in my chest during a short surgical procedure.
The Hickman catheter is a central venous line that just makes access to blood so much easier. During the stem cell transplant process, I had multiple vials of blood drawn every day, and there’s no way veins in my arms could have handled the load. Plus, the Hickman catheter goes directly into a large vein in the chest, and that’s necessary for the administration of chemotherapy drugs.
The procedure to insert the Hickman catheter isn’t much to write about. There’s a pre-surgical wash down the night before and the morning of, and an awfully early morning at the surgical center. But, the procedure itself is very short – two songs on Pandora. Literally. Terry, the nurse practitioner who inserted my device, asked me my favorite type of music. When I told him hair metal from the 80’s, he found a channel. One AC/DC song and one Van Halen song later, I was being wheeled out. Terry and team gave me just enough conscious sedation medication that I couldn’t remember the last 3/4s of AC/DC and the first 3/4s of Van Halen. But, I was up and out in no time, really.
The Hickman catheter went in high on my pectoral, over by my right shoulder. The internal part of the catheter was then snaked under my skin toward my neck, over my collar bone and then down toward my heart and a big pre-atrium blood vein. There was a slight incision at my collar bone, I guess to help guide the catheter down, that was small enough to warrant just a steri-strip to close it. The hub of the catheter itself was sutured in.
The weirdest and most uncomfortable part of the Hickman catheter, for me, were the two lumens that dangled externally from the HIckman hub sutured in my muscle. The lumens are the access points to withdraw and inject, and they dangle about six inches or so. It wasn’t uncomfortable for my physically, but rather mentally. It freaked me out a bit, and I stayed freaked out for the entire seven weeks I had it in me.
After the catheter placement, later in the afternoon, I visited the Infusion Treatment Area (ITA) for the first time, the first of many, many appointments there throughout the transplant process. That first visit was to get equipped with a four-liter bag of IV fluid that would be continuously pumped into me for the remainder of the day and night to begin a key hydration process prior to my initial chemotherapy treatment.
Four liters is a huge bag. Huge. So huge they put it into a backpack and then strap it to a luggage cart. You literally have to wheel around a roller bag full of fluid, all being pumped into your freshly-inserted catheter.
I was literally tethered to a roller bag with about six-to-seven feet of tubing. It was my constant companion, and it was just the start.
So, day one of the mobilization process is really the day before, the insertion of the catheter and the hook up to continuous IV fluids. For me, that was Wednesday, October 2, 2019. The next day, things got real.
Mobilization, for real
For me, Mobilization started for real on Thursday, October 3. That was the administration of my first dose of “proper” chemotherapy, a whopping dose of a drug named Cytoxan.
My appointment was early in the morning, for Cytoxan day is an all-day affair. My nurse started me out with more fluids and pre-medications, including anti-nausea medication and Lasix, a diuretic that would make me pee. Hydration and peeing is important because Cytoxan leaves the body through urine, and it can be very harmful to the bladder (in fact, a fellow myeloma patient in my support group was forced to skip the Cytoxan dose because he had once had bladder cancer). The medical team doesn’t want urine to build up in the bladder at all, and wants you to pee it out quickly. Thus, the extraordinary amount of fluid and the diuretic. Pee, pee and pee again.
Interesting side note on the urine: it’s toxic. We were warned if there were any “accidents” in bed, etc., to shower off and change the sheets while wearing gloves. Cytoxan is nasty stuff. My nurse wore complete personal protective gear, covering her scrubs, her arms and hands and her face, with a face shield, when handling the Cytoxan bag. Good for her. For me, it was being pumped directly into my heart.
Cytoxan took the better part of a few hours to administer and I was able to leave mid-afternoon, once again tethered to a four-liter bag of IV fluids. It marked the beginning of some safety precautions, namely the requirement to wear a HEPA filter mask in all hospital settings and outdoors, as well as following a low microbial diet (which eliminated all restaurants and the like – more on that in another post). I felt pretty good too, and even managed to eat a small meal while watching my Seahawks defeat the Rams on Thursday Night Football. After the game is when I started to feel … less than good.
I have a previous post up about nausea, and Cytoxan taught me a lot about it. Going into my first treatment, Lori and I bought a few very select meals and snacks to get me through Thursday night and Friday, when we were scheduled to go back home. I mean, we bought exactly enough for the snacks and meals I needed at the hotel.
Here’s the thing though. When nausea came, everything we bought, I didn’t want. I didn’t even want to think about eating them – the thought made me more nauseous. Unfortunately, it was 11:30 pm when it hit me, just as Lori was going to bed. I begged her to go to the Safeway down the street and pick me up some ginger ale and crackers, the oldest of old school, at-home anti-nausea remedies.
Keep in mind, I was already taking anti-nausea medications!
Lori returned and I drank some and ate some, but sleep came sparingly, and my nausea just got worse and worse.
Friday, my follow up appointment was in the early afternoon, and Lori was thinking about being late for it because I was finally catching a nap. Luckily, I woke up and we struggled into the ITA. With chemotherapy nausea, everything for me was a struggle. I laid in the recliner and napped on and off while my blood was tested and I continued receiving fluids and IV anti-nausea medications. Based on the blood tests, I needed to be administered some potassium, and that drip required some additional time. It was then that I was able to nap some, and it was also when Lori got trained on how to administer the three-times daily injections of 300 mcg of Neupogen, a growth factor designed to stimulate white blood cells to enter the bloodstream.
Many patients give themselves their own injections, but I hate, hate, hate needles and there’s no way I wanted to do that. Kudos to Lori for stepping up and giving me those three injections every day. I think it ended up being 11 days in total of daily injections, and our morning appointments with one another were no fun time for either one of us. But, together, we got through it.
Finally, late Friday afternoon, I was sent home, blanket covering my lap and a barf bag – just in case – in my hand. Saturday, I struggled a bit early in the day, but started eating soups by mid-day and felt much better by nightfall. Sunday, was a good day and I was past the worst of the nausea.
After the Cytoxan, the daily regimen was the three Neupogen shots in my abdomen every morning and an effort to remain as active as possible, including daily walks. Anytime outside, though, required the wearing of a HEPA filter mask. Not the most pleasant thing in the world, but if it meant getting out of the prison cell that my house was turning into …
Having to avoid crowds and not being able to go out of the house without the HEPA mask meant that aside from a walk, I was pretty much a captive in my home. I quickly learned that doing any time in prison would be really, really difficult. Total stir crazy.
On Wednesday, October 9th, I got a little field trip to Stanford to get the dressing changed on my catheter, and that was a nice diversion. It was also the beginning of daily blood draws to see if I had enough stem cells in my body for Apheresis. Aside from that first blood draw, my blood was drawn at Valley Care Hospital in Pleasanton, at the outpatient clinic. Olga was my phlebotomist on most occasions, and she was exceptional. Completely confident in finding my vein, she cleaned, stuck, drew, and bandaged me in less time than it took to type this sentence. And, I’m not really exaggerating.
Sunday, though, the outpatient clinic at the hospital was closed, and that required another long trip to Stanford for a blood draw. Little did we know that the commute was going to be a bit of a habit.
Monday, based on the results of my daily blood test, the Apheresis charge nurse called and asked if I could come into Stanford for a sophisticated blood test that they only conduct. The reason being was that my blood valued indicated I was close to a level I could get stem cells harvested. So, we drove over, gave the blood in no time at all, then drove back.
When we got home, I got the call – I was ready for Apheresis and I should be at Stanford first thing Tuesday morning. That would make three consecutive days in driving from Pleasanton to Palo Alto and back. That’s 2-3 hours round trip commute time. And, I think we were happy for it!
Apheresis
Apheresis, as a stage, is exciting. At its completion, it marks the end of the “first half” of the stem cell transplant process. As such, it also means the requirements of a low microbial diet and a HEPA filter mask for outside the home are lifted until the “second half” begins. Freedom and restaurants! Normalcy.
Apheresis, as an event, is not exciting. It involved sitting in a chair, hooked up to a machine for five hours. Blood was drawn out through the catheter, centrifuged to separate by weight and density, stem cells pumped into a storage bag, and the “leftover” blood pumped back through the remaining catheter lumen.
Once attached, there’s no separating from the machine. For anything. I didn’t want to pee in a bottle, so I was very diligent in managing my hydration that morning, drinking just enough in the morning, and drinking nothing for a couple of hours after being hooked up. I started hydrating more at the end, and made it through the five hours. But, don’t let me fool you – it was an almost constant thought throughout.
After my session, I wasn’t quite in the clear. They needed to count the stem cells collected to see if they had collected enough for two potential stem cell transplants. If not, I would have to return the next day, and perhaps another day or two after that, to complete the collection process. Luckily, later that afternoon I received the call – I overachieved and had supplied four times the requirement for what was needed.
With that news, the first half of the transplant was complete. No more safety precautions like the diet and the mask, and no need to stay in close proximity to Stanford, like during the hydration and Cytoxan days. It meant a resumption of normal daily life and a rest period for my body to build up until the second half started 17 days hence, with the Preparative Regimen.
[To be continued]
