Stem Cell Transplant

I have undergone an autologous stem cell transplant at Brigham Women's Hospital. The first steps to prepare for it began at home September 16^th, 2023. It is called autologous because it uses my own stem cells. The purpose is to try to kill all remaining multiple myeloma cancer cells with high dose chemotherapy. Since the chemo will also kill non cancerous cells including bone marrow, stem cells were collected from me before the chemo and will be re-infused after to rebuild those things.

This post describes the daily activities preparing for and including the transplant.

Another post (https://chuckruns.blogspot.com/2023/09/transplant-recovery.html)  describes my recovery from the transplant.

The transplant calendar with each day's activities is at the end of the post.

 

-- Daily Updates -------------

Saturday Sept 16: Today was the first of four days giving myself injections. It went okay considering I haven't done injections before. The medicine will cause increased production of stem cells, so that enough can be collected next week.

 

Sunday Sept 17: Day two of self injecting "growth factor" medicine. Doing the injections was a little easier. I did learn by experience that a slow jab hurts more than a quicker one. So far I have not recognized the common side effects of headache, bone pain or fever.

Monday Sept 18: Another self injection. Travel day, so about an 8 hour drive to Boston. Short visit with son Keith and family. Dinner at hotel so I don't have to go out in the heavy rain. My first appointment tomorrow is at 9:30 for a blood draw.

Tuesday Sept 19: This was a full day. I ate an early breakfast because I had to fast 7 hours before a 1:30 appointment to have a port put in under sedation. And I did my last self injection to stimulate stem cell production. I learned today that the medicine for this generally causes bone pain. I've had pulsing pain in my lower back during the last two nights. 

My appointment to get the port went well enough. The staff were all very nice to me. I don't remember anything of the procedure except them preparing me in the procedure room. I think I slept through the whole thing. I got a Hickman three lumen venous catheter that will be with me until just before discharge. After the numbing medicine wore off the entry near my neck is uncomfortable.

My chest and new piercing.

 I needed another injection to stimulate stem cell production - this one in late afternoon. Then I went to Keith and Jillian's for dinner. Tomorrow starts stem cell collection.

Wednesday Sept 20:

Day one of stem cell collection. I checked into the Kraft Family Blood Donor Center for my 7:30 appointment. After the recording of the always required vitals, I met Felix, who would be my nurse for the day. He explained what would happen for the collection process. And he reviewed my blood work results which showed lower than desired stem cell levels. The calendar has three days for collection and he said I likely will need all three. I read into his comment that three days might not be enough.

He gave me injections of the same medicine I have been giving myself for the last four days. I was hooked up to the apheresis machine that would process my blood to separate and remove the stem cells. It works in a similar way to a dialysis machine. The process started without fuss and without me feeling anything happening in my chest through the central line. The machine makes a clicking sound as it works and beeps when something needs attention.

Soon after I got comfortable in my chair, breakfast was delivered - bagel, muffin, fruit cup, coffee. Part of the setup for the day was a protective cover under the central line connections. Felix said it was in case of medical messes, not to protect a messy eater. It did get messy enough to be replaced.

I'm not sleepy, really

About an hour after we started, the machine beeped about a problem. Resolving the issue took 20 or more minutes, the efforts of several nurses and a support call. Around lunchtime, the machine beeped for another problem. Apparently there was a blockage in the lumen for the line taking my blood to the machine. Flushing it multiple times didn't fix things so Felix switched to another of the three lumens in my "port". One line goes to the machine and one returns my blood to me.

Lunch arrived while the stopped line was being addressed. Off and on through the day I exchanged messages with Rose and our kids describing things and relaying info. I also did all of the devotional and online reading I normally do and more. 

There was a visit by a physician assistant who reviewed everything happening and explained the approach to the process considering my particular lab numbers. Because my labs showed lower stem cell levels I would be staying on the machine for 8 hours. And so it went.

It really was an easy experience overall. Other than being confined to the area next to the machine, it was not uncomfortable physically.  I adopted a mindset of I need to be somewhere, so being here is okay, however long and whatever it takes. Being confined means that everything comes to the patient - staff, food, restroom devices (use your  imagination).

Before going back to the hotel  I got an injection to mobilize stem cells overnight to make the most of tomorrow's collection.

Later I got a call from Dana Farber saying 2.3 million cells were collected toward the goal of 4 million, and maybe tomorrow the rest can be gotten. That is encouraging for sure.

Thursday Sept 21:

Day two of stem cell collection started at 7:30. My nurse today was Renata. Things related to collection were pretty much the same as yesterday, except it went more smoothly. Nothing like equipment malfunctions came up. The numbers from my labs were about the same as yesterday. According to the nurses and the physician assistant, it was unclear in the morning whether to expect I would have collection again on Friday. The outlook seems brighter to reach the target numbers this week, but needing the third day was a toss up. Since yesterday got better than expected results, we would hope for a repeat. And pray.

One new concern was that my blood platelet level was low. If it would go too much lower during collection, it could require an infusion and hospital admission.

Keith came near noontime to sit with me. Lunch arrived around the same time. I wasn't hungry yet, so the burger and fries didn't excite me. Keith's company and conversation more than made up for that.

One of the things they manage during collection is blood calcium level. It can be dangerous if the process causes it to go too low. Muscles need calcium to work properly and the muscle they mentioned was the heart. The symptom they watch for is tingling or numbness in the lips. I was regularly asked about the tingling and when I had it, the calcium drip was increased. There was also a saline drip to keep me hydrated. Based on the frequent need to relieve my bladder, it worked. Plus I gained a few pounds yesterday and also today.

When my 8 hours of machine time was finished, we waited for lab results to know about the platelets. My blood pressure was checked too. Both have to be acceptable for the patient to be released. The numbers not near normal but were in range to consider it safe for me to leave.

Keith and I came back to the hotel and rested for a while before returning to Dana Farber so I could be tested for covid. This is required for hospital admission. While we were still there, I got the call with the collection results. Good news! Just under 2 million cells were collected, so my total for both days was 4.3 million. No collection was needed for Friday; no appointments at all.

Keith and I walked back to the hotel again, then had a celebration dinner at the hotel restaurant.

Friday September 22: Nothing today, I will enter the hospital tomorrow.

Saturday September 23:

I was admitted to the hospital in the early afternoon today. My room is big enough for two patient beds but is set up only for one. I've had my vitals checked twice by early evening. I was interviewed by a nurse, a physician assistant and a doctor each one separately. After covering their questions they each answered any questions I had. 

I ordered a light dinner since I have been eating more than I wanted this week. The changing schedule each day and convenience have been part of that.

Everyone has been super kind and helpful.

It sounds like I will get a chemo treatment in the early afternoon tomorrow. It will take a half hour or so. Side effects usually are delayed a couple of days for the chemotherapy that I will get. And a week later is when patients are bothered the most by side effects.

Not much else is expected this evening except checking vitals. I intend to lay down for sleep earlier tonight.

I'm feeling good and I'm eager for this show to begin in earnest.

 

Sunday September 24:

Day one for a chemotherapy infusion.

 Last night I didn't get a good night's sleep; falling asleep was slow in coming. Probably there were several factors: the new environment with an air filtration system moving a lot of air (i.e. sound & draft), nurse visits for meds and vitals, a mild headache, thinking about things. My blood pressure has been high enough to be monitored and possibly addressed.

I was able to shower this morning, which was great. Among the protocols for preventing infections is a chlorhexidine treatment. This involves using a set of treated wipes on my skin - six wipes, one for each limb, plus front and back of my torso. I get to do it myself.

Prevention of mouth infections involves special mouth rinses several times a day, as well as tooth brushing with the provided toothbrush and toothpaste. All of my hygiene and grooming items have to be replaced to eliminate old sources of infection that I won't be able to fight right away.

About the chemo, I get a melphalan infusion. To reduce damage to the cells of the mouth and throat, I need to chew ice. The "cryotherapy" is for 30 minutes each before, during and after the 30 minute infusion. But my pre chemo ice chewing went twice as long because of other needs that kept my nurse busy for a while.

In addition to the ice, other medicine to head off side effects were given alongside fluids and other things like electrolytes. These were all delivered with IV pumps through the central line. The line probably saves me from a dozen needle sticks a day.

I really didn't notice any changes in how I felt during and after getting the chemo for about 5 hours.

Phone calls and texts with family and friends went on throughout the chemo session and beyond.

Part of the care I'm receiving is tracking my fluids, the amount going in and coming out.  I made lots of bathroom visits, bringing the IV stand along. I've gotten better at preventing myself from getting wrapped up in the IV lines. (smile)

This evening's vitals check showed much better blood pressure numbers than yesterday. I'm hoping it keeps moving towards what has been normal for me. This evening I have noticed dry mouth coming on. The nurse will be considering when it needs addressed.

 

Monday September 25:

This is my second and last day for a chemotherapy infusion. The nurse suggested flavoring the ice that I would be chewing with a popsicle.

Last night I didn't get a good night's sleep, but it was better than the previous night.

My blood pressure has come down to about my normal numbers. This chemo drug generally has that effect.

I didn't feel so good when I got out of bed.  I had a mild headache and unsettled stomach. I ordered a light and rather plain breakfast. Applesauce, scrambled eggs, yogurt, coffee. I got back to feeling okay as I carried on with the day.

Pre-treatment meds and fluids started about 10:00 for chemo at noon. Ice chips were brought in with the added flavor option: popsicles, Italian ice. I started eating this at 11:30 and continued until 1:00.

The chemo experience was like yesterday, no noticeable effects during the infusion. I remained on the fluid drip until 4:00. I had company for that period since Keith came to be with me. We walked in the hallway around this pod of rooms. After each guessing how many steps it takes to walk the length of the hall from my room to the end we paced it off. Just 35 steps. The personal care assistant told us that one patient calculated how many times it takes to walk a mile. My calculation says it would be 60 lengths of the hallway.

I had at least a couple of chemo brain moments today. Thoughts I had trouble expressing clearly and things I did were signs of reduced brain power or processing. The most recent example that I noticed was that I put my hospital laundry in the trash can this morning. I only realized it when the trash was being emptied. I noticed how full the bag was and some part of my brain realized it was because my dirty clothes and towels were in there.

With the evening "off" I spent time with various digital messages and online reading. And calling Rose.

 

Tuesday September 26:

Another night passed with too much time awake. Some mild nausea. A steroid medicine interferes with sleep. I got out of bed in the morning feeling not so good. Things improved through the morning.

My appetite has mostly disappeared. I ordered beverages, yogurt, applesauce, banana bread to make for more periods of eating small amounts.

Pretreatment meds and fluids started about 11:00 for receiving stem cells at 1:00. Before starting the infusion, the hospital chaplain offered a blessing of the stem cells and all that will go into making it succeed.

During the infusion I was in my bed for monitoring heart, vitals, etc for reactions that could arise. Gladly, nothing developed and only a brief slowing of the infusion rate was needed to satisfy the nurse that everything was going well. I think it took just over 30 minutes.

There was a four hour break before infusing the second bag of cells. I mostly just rested in bed. That is except for frequent trips to deal with the fluids I had received. The second infusion went smoothly and a little quicker.

The fatigue and other side effects are making focused thinking more challenging. Some conversations today were hampered by this. Some ideas took more than one try to get it right. That eased some as the second infusion approached.

I will try to get to bed early to prepare for another day. I am to have an allergy challenge tomorrow. I will be gradually given an antibiotic to see if I am still allergic to it as I was 40 years ago. Almost every patient gets some kind of infection and the more options for antibiotics, the better.

Rose and I are encouraged and strengthened by the prayer and kind words by so many. God is in this with us.

Blessing of the stem cells

 

 

 

 

 

 

 

 

 

 

 

 

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 Transplant Calendar