The Filgrastim Injections and PBSC Collection Procedure

It’s the night before my first Filgrastim injection.

I’ll be travelling to my apheresis center to receive my first Filgrastim injection, as it has to be given under medical supervision in the event of an adverse reaction. Additional blood work (a Complete Blood Count, or CBC) also needs to be drawn prior to the first injection to determine the level of white blood cells, platelets, and stem cells in my bloodstream.

This CBC will be used as a baseline for comparison for CBCs drawn immediately prior to the PBSC procedure and immediately after the procedure. The results from all three CBCs will show how many stem cells my body produced due to the Filgrastim injections, and also how my body handled the PBSC procedure.

I’m nervous. I’m not going to lie about that. But I’m not nervous for the reasons you might think. I am not worried about the injections or the blood draws. I’m not even nervous about the collection procedure. I’m worried that something will go wrong and cause the PBSC collection to be delayed, or even worse, cancelled.

Today is Day -6 for my recipient. Six days until transplant (Day 0). This is the day she checks into the hospital to begin her chemotherapy and radiation. This is the day she fully puts her trust into the hands of her transplant team . . .and also into mine. I can’t imagine what is going through her mind.

Day 1 of Filgrastim

I am up early so I can get dressed, eat a full breakfast, and attempt to get my mind in order before heading to the apheresis center. I’m feeling calmer than I expected.

My wonderful friend, Cheryl arrives to travel with me. She has volunteered to be my hand holder for the day. Cheryl has a wonderfully calm presence and I knew she would be good company. Her duties for the day included: providing good conversation, driving my car if I felt unwell or simply didn’t want to, soothing any nerves (mine, not hers), and of utmost importance – she was to serve as my surrogate drinker.

Alcohol consumption is not encouraged while taking Filgrastim. This was unfortunate, as I had found a local brewpub near the apheresis center where I was planning on stopping for lunch. The pub had just brewed a double chocolate stout that I would not be able to partake of. I had hopes my surrogate drinker would be nice enough to drink a pint of it in my honor (and maybe even let me take a tiny sip of it).

The appointment lasted about 40 minutes. A vial of blood was drawn for the CBC and then the Filgrastim was injected. Two syringes, one in the back of each arm in that lovely strip of fat that us ladies are so fond of.

The amount of Filgrastim injected depends on your weight and since only a certain volume can be injected into any one spot of your body, more than one injection can be required. The injection needs to be into fat, so the back of the arms, belly, and thighs are the most frequent injection sites.

I only felt a slight sting when the needle was inserted and as the drug was pushed in. The sting was very similar to a mosquito bite and disappeared almost as soon as the needle was removed. I noticed that the doctor pinched the injection site immediately after removing the needle, which also helped to alleviate the sting.

The staff had me hang out and relax for the next 30 minutes so they could watch me for any allergic or adverse reactions. During that time we filled out additional paperwork, went over questions I had, and discussed information I needed to know for the next few days of home nurse visits and the day of collection.

Much to my relief, I had NO allergic or adverse reactions. This had been one of my main worries, one of those persistent “what-ifs” that had plagued me over the past few weeks.

Thankfully, that worry was laid to rest.

Now it was time for beer. Or, in my case time to watch someone else drink beer.

My surrogate did me proud. She reported that the double chocolate stout was awesome.

We arrived back home around mid afternoon. Fatigue was starting to set in. It had already been a long day for me, due more to the emotional side of the experience but also possibly to the Filgrastim kicking in as fatigue is a commonly reported side effect.

After recharging with a few hours of sleep, I was up in time to have dinner with friends at a new Thai restaurant in town. It was nice to kick back and relax and to update them on the donation experience to date.

But, after a few hours, I was tired again. I headed home and was in bed at the early hour of 8pm.

Day 2 of Filgrastim

As told in an e-mail update to family and friends:

Greetings from my couch!

It's the eve of Filgrastim Day 2. The home nurse arrived around 9 this morning to administer Day 2's dosage. The total visit took around 30 minutes.

Mentally I'm doing well. As we get closer to the collection date the number of things that can go wrong are exponentially decreasing. This has been my main worry to this point - possible delays or changes in patient status. 

Physically I'm doing well, just a bit tired. I was exhausted yesterday so went to bed early, then ironically, tossed and turned all night. I made up for that with 2 naps today :) I am running a low-grade headache and the lumbar region of my spine is starting to ache. My tailbone and pelvic bones are also chiming in occasionally with a twinge here and there. This is a great sign the Filgrastim is working and my stem cells are migrating in mass numbers to my bloodstream.

I'll be taking it easy for the weekend; thankfully I don't have too much to do. I foresee many naps.

Mom is arriving Sunday around 1pm. I'll swing by the airport then we'll meander on up to the hotel. 

            Love to all

Day 3 of Filgrastim

I slept so much better last night! I was still waking up every 3 to 4 hours but thankfully I was actually sleeping in between waking up and not just tossing and turning.

Part of the difficulty in sleeping was finding a comfortable position. I found that the best positions were on my back with a large pillow raising my knees and on my right side with my top leg resting on a pillow. The pillow helps take the weight of the legs (or leg) off my lower back and sleeping on my side takes the weight off my tailbone.

The rest of the day was very much a repeat of yesterday.

The home nurse visited around 10am for my third injection.

I was able to finish up the laundry, vacuuming, bathroom scrubbing, and bed making that needed to be done before Mom arrives tomorrow.

More body parts are joining in the bone twinge craze. I feel the twinges mostly in my sternum, lower back, tailbone, and back of the pelvic bones but occasionally my ribs, shoulder blades, and top of my femur bones will join in the chorus. They feel similar to a muscle ache you would get from a good workout with the only problem being that you can’t stretch the ache out of a bone. Thankfully the twinges are gone within seconds of appearing.

Mentally I’m still feeling calm. Having a list of things to do is helping keep me occupied and moving. I also love that it’s the weekend. There’s no place I have to be, I can just slowly work my way through my to-do list and take naps when and if they’re needed.

Day 4 of Filgrastim

My sleep patterns improved again; I slept deeply last night, only waking up once.

The home nurse arrived at 9:30am to administer my 4^th dose of Filgrastim and to release me from her care.

I threw clothes in a bag and before I knew it, Mom and I were arriving at our hotel. The registry had reserved a room for us in order to remove any worries or possible complications of travelling the morning of the collection. Since it was still winter in the northeast I was happy to not have to be concerned about snow or ice on the roads.  

I went down for a nap while Mom tried to walk out the stiffness of 7+ hours of airline and car travel. When I awoke I found her in the hotel bar enjoying the local paper and a second glass of white wine; which, she claimed, was in my honor. It was another shining example of my surrogate drinkers stepping up to the plate on my behalf.

Mentally, I was excited for tomorrow. I was ready to get my stem cells to my recipient. Thoughts of her had frequently been on my mind and I wondered how she was handling her treatment. I hoped she was surrounded by her family and loved ones and that she was as comfortable as possible.

Physically, this had been the most challenging day so far. My bone twinges had become very sharp. Thankfully they still only last a few seconds, but they definitely get my attention! I felt best when I was lying down in bed or sitting and relaxing with various pillows propped around me to lean on.

Day 4 as told in an e-mail update to family and friends:

Collection Day is tomorrow!

Mom and I have arrived safely at the hotel. We'll be checking in around 7am tomorrow to get my last round of Filgrastim and blood work taken, and then it's off for some breakfast while the Filgrastim kicks in and my CBC is processed. I'll probably be hooked up to the machines between 8 and 9 tomorrow and will remain a captive until they have collected the target number of stem cells they're looking for.

Wish us luck!

Love to all

Day 5 and PBSC collection

We arrived at the apheresis center just after 7am. My last dose of Filgrastim was quickly administered and more vials of blood were drawn.

Some of the vials were designated for the cryo-freezer, as these were the samples being submitted as part of the clinical trials I had joined.

Three of those vials were going immediately upstairs to be processed before the collection began. Some of the vials would be used for another CBC, Chem Profile, and Lipid Panel. And one vial would be tested for the all-important CD34+, the value that indicates the number of stem cells circulating in my blood stream. This number would allow us to ballpark how many stem cells would be in the final collection bag.

As I was to learn, today was going to be all about the numbers. 

Mom and I left the apheresis center for breakfast in the cafeteria. We had one hour to eat. By the time we returned the blood tests would be in.

I had been advised to increase my calcium intake and to avoid caffeine. The calcium was to counter-effect the anti-coagulant that would be mixed into my IV of returning blood and the caffeine avoidance was to negate the need for a bathroom trip during the procedure.

My breakfast included a breakfast sandwich with a side of yogurt and fresh fruit. I skipped my normal morning cup of coffee and opted for a cup of herbal tea.

As Mom and I consumed our food at a leisurely pace, we watched some of the morning shows on the televisions in the cafeteria. Good Morning America (GMA) was on with Robin Roberts.

Robin had been diagnosed in 2012 with Myelodysplastic Syndrome (MDS) and had undergone a bone marrow transplant. Her older sister had been her stem cell donor. I had closely followed her through her transplant process and had been inspired by her grace and strength.

Following her mother’s advice of “make your mess your message”, Robin took to the airwaves to talk about bone marrow transplants and the crucial need for more donors. People across the country heard her message and flocked to join the registry. Patients who were currently facing the daunting process of a bone marrow transplant found inspiration just as Robin seemed to draw strength from the stories transplant survivors shared with her.

As GMA switched to the morning’s weather, they showed the national map. My heart sank.

A section of the country appeared to be smothered under a giant white ball of snow and ice. At the bottom of the screen sentences scrolled across in a newsfeed, snippets of which jumped out at me: “paralyzes parts of the country”, “hundreds of flights cancelled”.

Crap. I had no idea where my recipient was located. My stem cells, once collected, would be transported by a bone marrow courier straight to her. This might be a major hurdle my courier would have to deal with. I crossed my fingers that my recipient was nowhere near the affected area and the storms would not delay the courier.

By 8:40am we were back at the apheresis center. I had stopped by the restroom twice on the way back from the cafeteria to ensure I was starting the PBSC procedure on an empty bladder.

While some centers have bedpans if you need to use the restroom during a collection, I had been advised that this particular center did not deal with bedpans. Bathroom use was allowed, however they had to stop the collection procedure and unhook your lines (the IVs stayed in your arm, just the tubing was removed). You would also only have the use of one arm as the other would have a board velcroed to it to prevent bending of the arm.

I seriously wanted to avoid having to do this. My strategy going in to the procedure was simple: no caffeine, an empty bladder, and ice chips. The ice chip suggestion had come from a friend who had undergone chemotherapy treatment. The ice chips would be cold, quench the feeling of thirst, help me stay hydrated, but wouldn’t add large amounts of liquid to my body that would go straight to my bladder.

The blood tests were back. As expected, I had a high white blood cell count and the CD34+ count was in the ballpark for the amount of stem cells we needed to collect. Yes!!! I was also extremely relieved to learn the current snowstorms would not affect the delivery of my stem cells. My recipient was not located in the affected portion of the country.

Time to collect the stem cells. My “in-port” had to be inserted first. This is the IV that would return the blood back to my body after the stem cells had been removed by the apheresis machine. The needle is a smaller gauge and can be inserted in the back of your lower arm (a smaller needle means it can be inserted into a smaller vein). The IV placement allows this particular arm to be mobile enough to work on a laptop, write a letter, or work an IPod or Kindle. Since I am right handed I asked that the “in-port” be placed in this arm.

Boom. The needle was in and the port and various tubing was taped into place then wrapped with gauze.

The “out-port” was placed in the crook of the elbow on my left arm. This is the IV that would remove the blood and feed it through the apheresis machine. The needle size is the same as those used for regular blood donation. The IV placement in this arm unfortunately means that the arm must be fairly immobile.

And again, at lightning speed, the needle was in and the port and tubing was being taped into place. The pain from insertion was minimal; I honestly think the sting from the Filgrastim injections lasted longer than the pain from the needle placements.

All of the lines can be a bit intimidating, but in reality you only have 2 IV sites.
My left arm was the "out-port" and my right arm was the "in-port". The extra lines
mixed in saline and anti-coagulant as needed to keep the process running
smoothly (literally). I referred to those lines as my Lime-Aid and Gatorade lines
as they had a faint green and yellow tinge.

It was 8:50am, we were off and running. Or more appropriately, the procedure was off and running. I, on the other hand was attached to a 40-pound machine via an IV leash. I, most certainly, was not going anywhere for the next few hours.

Time to plug in my earbuds, turn on my IPod, and take my first nap of the day.

I awoke shortly after I had fallen asleep. The apheresis machine was beeping. A nurse came over to check the machine’s computer screen. She explained that it is common for the patient’s veins to take 10 or 20 minutes to “plump up” and deliver a continuous flow of blood. The beeping was the machine simply alerting there was not a smooth flow established yet.

The nurse asked me to squeeze a foam disk in my left hand to help establish that flow. A few minutes later, my veins had plumped up and the apheresis machine was happy. I went back to sleep.

I slept off and on for the next few hours. While I slept Mom sat at the foot of my bed, keeping watch.

During the times I was awake, I talked with the staff. Dan, the head of the center, had been doing stem cell collection for over 20 years. He was able to explain what would happen inside my recipient’s body when she received my stem cells.

Depending on the preparatory regimen my recipient had undergone, her bone marrow might have been either completely obliterated (myeloablative), or only partially obliterated (non-myeloablative). If she had undergone the non-myeloablative treatment, she would have some bone marrow remaining in her body.

After treatment, her body would begin signaling her marrow that it needed to produce more red blood cells, white blood cells, and platelets. At the same time her marrow would be producing new cells, my infused stem cells will begin settling in and creating new, healthy marrow that would also produce it’s own line of red blood cells, white blood cells, and platelets.

And that’s when our two bloodlines would go to war.

My cells will quite literally be on a “seek and destroy” mission. Each of our cell lines will recognize the other as foreign and move to kill them.

The hope is that my cells will kill my recipient’s cells faster than hers can kill mine. My cells have several advantages in the fight since they’re healthy and my recipient is on immunosuppressive drugs to decrease her reaction to my cells.

If my cells win, they will establish a new system of bone marrow that is completely mine. All of her future blood draws would have my DNA (and blood type). If some of her marrow survives, it’s possible she will have 2 sets of DNA in her blood – hers and mine. This is known as chimerism.

Up until this point in the procedure, I had been giving my stem cells a pep talk (in my head, not out loud) to let them know they were going to a new home, one they needed to recognize as theirs and fiercely protect. When I heard my stem cells were possibly going to battle, the pep talk quickly changed to a new one that told them to burn their new house down to the foundation, re-build it from the ground up and protect it from all foreign invaders.

Silly, I know, but I’ve seen the power of positive thinking and optimism and was hoping that my thoughts would somehow rub off on my stem cells, providing just that extra bit of luck for my recipient.

I thought frequently of her during the collection procedure. She had completed her chemo regimen the day before and today was her day of rest. I wondered how she was doing and what she was thinking. I hoped she had a loved one nearby, keeping watch over her, just as I had someone with me.

Around noon, the collection bag had a respectable amount of fluid in it. It was time to draw a lab off the bag to tell us how many stem cells were present. A nurse gently mixed the contents of the bag to ensure the cells were evenly mixed so the sample drawn would give an accurate estimate of the contents. She opened a valve at the bottom of the bag and one of the attached vials filled with fluid. The vial was gently clipped off and it was immediately sent upstairs for analysis.

The CD34+ count was back within the hour. Based on the number of stem cells present, we would fall just short of the number the patient’s transplant team had asked for. The courier was scheduled to arrive between 3 and 3:30pm. The apheresis staff hoped to have the stem cells packaged and ready to leave with the courier by 3:45pm.

There were two options available: let the collection continue for 45 minutes longer than planned, which would get us the number of stem cells the transplant team had asked for or end the collection at the scheduled time and send the number of stem cells we had.

Each option had its pros and cons. If we let the collection go longer we would collect the target number of stem cells but we also ran the risk of the courier missing his flight. Given the time of day, he was likely on the last flight of the evening. If he didn’t make it he’d have to spend the night and get the first flight in the morning.

This would cause a delay in the patient receiving the transplant and possibly pose a challenge in keeping the stem cells fresh during transport. From the time the stem cells are collected, they have a natural life span. The goal is usually to get the stem cells to the recipient within 12 hours of collection (24 hours for international transplants).

The other option was to ask the transplant team if the projected number of stem cells to be collected was acceptable. If the transplant team said yes, the collection would end as scheduled and the courier would make his flight. On the down side, more stem cells are always better than fewer when going to transplant.

The decision was up to the transplant team. The apheresis center made the phone call.

Due to strict privacy rules enacted by the Be The Match registry, the collection center where the donor is located does not have direct contact with the transplant center where the recipient is located (and vice versa). This is to protect the privacy of both individuals and to ensure that medical decisions are made in the best interest of each patient (while I was the donor, I was also considered to be a patient at my apheresis center).

Phone calls from the apheresis center had to go first to my donor center representative, be routed through the national office of the Be The Match registry (the only party that had access to both donor and recipient information), and finally to the transplant center where my recipient was located.

As you can imagine, this took a bit of time.  

Just after 2:30pm, the transplant team’s decision came in. They were happy with the number of stem cells we had! The collection procedure would end as scheduled at 3:15pm.

The apheresis center exploded into a frenzy of activity. The apheresis machine was kicked into a faster collection rate in an effort to collect as many stem cells as possible. While the machine was being adjusted, the rest of the staff started working the phone lines. One call was to the lab upstairs to notify them I would be “off machine” at 3:15pm and to expect 2 vials soon after that. One of the vials would be from the collection bag; the second would be from my IV line for one last CBC.

Specific tests had to be run on the final “product” as the stem cells are called. The all-important final count of CD34+ is just one of the tests that would be run. Since a transplant depended on these tests, a lab person would be waiting for the vials in order to immediately begin the testing. The CBC would give a post PBSC collection “snapshot” of my blood levels. Specifically, my platelet levels needed to be checked. If they were found to be below a certain number I would need to be carefully monitored.

Other phone calls went to the courier to update him of my ending time and to my donor center representative to give a complete progress report.

Before I knew it, it was 3:15pm. The collection was stopped and the precious bag of stem cells was removed. As a vial was drawn from the collection bag, one last final vial of blood was taken from my IV line. The vials were immediately handed to a staff member who rushed it to the waiting lab.

My bag of stem cells just before the PBSC collection ended.
It is very humbling to think what this tiny bag represents to my recipient.

The apheresis machine was flushed with saline and then run in reverse to put any remaining blood in the IV lines back into my body. And then the lines could be removed. The “out-port” in my left arm was the first to come out, followed by the “in-port” in my right arm. The IV sites were covered with a small piece of gauze then bandaged into place with an adhesive wrap.

I was able to take a quick photo with my stem cells before they were hustled away. My impression of the bag was that it was much smaller than I expected. Mom’s impression was that it looked like V8 juice.

The collection had taken 6 ½ hours. After sitting still for that amount of time I had some critical business to take care of. I was able to slowly shuffle to the restroom.

Standing was interesting, as was walking. I felt heavy, as if my arms and legs weighed 50 pounds each, and very stiff. I was so ready to get my body moving again, to try and get the stiffness worked out of it.

Mom and I gathered our belongings and said our goodbyes to the staff. As we left the center with me using Mom’s shoulder for balance, we passed into the waiting room where a distinguished looking gentleman was sitting. My courier.

The man had a calm presence of competence about him. He was looking down at a folder of papers and did not look up as we entered the room.

I stepped away from Mom and gently touched the man on his knee to gain his attention. In that moment I wanted him to know how much I appreciated the life saving work he did and that I understood the responsibility he shouldered every time he was on a courier mission.

A lump came into my throat and tears gathered in my eyes. There was no way I was going to be able speak more than a few words.

I settled for two. “Thank you”. 

As I uttered the words I felt my throat close up. Further speech was impossible at that moment.

He was startled at first but then seemed to quickly realize who I was. He smiled.

I turned back to Mom, and with my hand on her shoulder, we left.