Myeloma Mom: Stem Cells On Ice
For me, November will always remind me of harvest time – my stem cell harvest time.
Six years ago this month, my family and I spent three weeks at the Mayo Clinic in Rochester, Minnesota, so I could undergo stem cell collection. I wasn’t yet ready for a transplant, but my doctor wanted me to collect enough stem cells for three autologous stem cell transplants and then freeze and store them for future use.
During those three weeks at Mayo, I was able to squeeze out 10.4 million stem cells. They are still on ice in Minnesota, waiting for me.
I think about my cells from time to time, but especially in November, when I can check off yet another year that I didn’t need them. It’s a little strange to think that part of my body – a useful, important part of my body – is in storage somewhere.
Things I wonder about: Do my cells miss me? What does the storage facility look like? Are people taking good care of them? If I need to have a transplant when I’m, say, 42, will using cells harvested when I was 32 make me feel 10 years younger?
Here’s the backstory: I was diagnosed with smoldering myeloma in the fall of 2005. My doctor at Mayo advised no treatment, and we took a “watch and wait” approach. A year and a half later, when my white cell count dropped and I became anemic, I started a regimen of Revlimid (lenalidomide) and dexamethasone (Decadron). I had a good response to the drugs, so six months later I was able to take a short break from treatment and harvest my cells.
The Mayo Clinic has lodging for transplant patients, but my husband and I wanted to bring our daughter (who was then two years old), as well as my parents to help take care of her. We were able to find an apartment complex that rented to patients like me, and we got a nice two-bedroom within walking distance of the clinic. In fact, it was right in the middle of everything, connected by indoor walkways to the clinic, as well as a mall, a public library, and a Barnes and Noble. My parents and my daughter loved to explore the hallways and set out on daily adventures.
Looking back, I should have relaxed and enjoyed the adventure, too, but I didn’t. Not at all.
In the days leading up to the harvest, I had to undergo a series of tests, including a bone marrow biopsy and enough blood tests to require 23 vials of blood. Each day, I needed injections of medication to stimulate the growth of the stem cells.
I had a line surgically implanted in my neck. Two tubes dangled out of it; during the collection process, a machine sucked blood out of one tube, filtered out the stem cells, and returned the blood to my body through the other tube.
It was a slick invention, to be sure, but it looked really, really gross. I had to make an emergency trip to the mall to buy a bunch of turtleneck sweaters so nobody would have to look at that thing. Plus, I lived in constant fear of my two-year-old playfully yanking on the line and, well, killing me.
My doctor had warned me that the collection process itself wasn’t painful, it was just really, really boring. She was right about that. I spent five hours a day in a bed, hooked up to a machine. Sometimes I’d sleep. Sometimes I’d read. Most of the time I’d watch The Golden Girls or Little House on the Prairie. In theory, that sounds heavenly. You wouldn’t think that lying in bed for five hours would be exhausting, but it was. By the time we got back to the apartment each day, I’d need to lie down again.
And it turned out I was a slow collector. My stem cells were like sluggish little turtles, meandering into the tube whenever they felt like it. It took me eight days – with several days “off” in between to let my body grow a few more of my turtle stem cells – to collect my 10.4 million cells.
I even had to collect on Thanksgiving Day. I watched the Macy’s Thanksgiving Day Parade on TV, and the sweet nurses brought me pumpkin pie.
But I got it all done, and I know I shouldn’t complain about any of this stuff. I was lucky to get all of these cells. I have been lucky to not need them so far. I know all of this is part of the drill for myeloma patients, and I made it through.
But here’s the hardest part, and the part I can’t forget: For three weeks, I couldn’t be a regular mom. Because of the line in my neck, I wasn’t allowed to lift anything heavier than 10 pounds. Since my daughter weighed around 30 pounds, this was a problem. No lifting her into the bath or out of the portable crib. No putting her in her booster seat at breakfast time, and no picking her up just for fun.
Once she got a dirty diaper at the Rochester public library and flatly refused – as only a stubborn two-year-old can flatly refuse – to let my husband take her to the restroom to change her. She only wanted me. We had to drag our stinky, screaming child all the way back to the apartment. It seems like a funny anecdote now, but at the time I was in tears.
I was used to being an active mom, and now I couldn’t take care of her on my own. That was tough.
At the end of the month, I finally got the word that I had hit – and even slightly surpassed – my stem cell goal. My line was pulled out, we packed up our things, and we drove through a blizzard to get back to Kansas City. I was able to go back to my regular-mom life, and my stem cells were put on ice.
My local oncologist here in Kansas City, once joked, “Stem Cells on Ice. That sounds like a Disney show that’s coming to the Sprint Center!”
After that, I started picturing a bunch of cute little cells all bundled up in scarves and wearing ice skates. They look sad because they’re cold. Tough luck, little cells. I’m glad all those little guys are available, and I worked hard to get them, but I hope I never need to thaw them out.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at
.
Hi Karen: Enjoyed your article. It brought back memories. I took five shots at trying to collect stem cells. Each time I had to have the line inserted and I practically lived in the apheresis room. After three misfires I even took the hyperbaric treatments with the rest of expensive growth cocktail and managed to squeeze out a few million. I I was ecstatic but the docs were not impressed> At any rate, I have these valuable little suckers lodged in ice in Little Rock waiting for "the day".
Enjoyed reading your reminiscences, Karen. My husband had his transplant this past April; his stem cells behaved like rock stars, as they harvested over 30 million in just four or five hours. His M-spike is now being maintained at 1.1 - 1.2 with Pomalyst. Like you, we hope the cells never need to be used again, but it's good to know they are there.
We were talking to his PA yesterday about how long the ones on ice would last, and she said she knew of a patient who used his stem cells after they had been frozen for ten or eleven years.
I am curious if your insurance paid for the collection and storage since transplant was not contemplated near term? My insurance will not and I am told many others are similar.
mine were collected two years ago and not used yet Dr thinks i am not strong enough to go through stem cell transplant im 67 years old three other Dr think i can dont know what to do.
Reading the comments I had to respond to you Joe...my dad had his transplant in June, at 71 years old with more ease than any other patient on his floor. In his case, he didn't have a single day where he missed a meal or stayed in bed. I was almost worried it wasn't working because he seemed to be without so many dreaded side effects but he achieved a near complete response! Good luck and don't assume your age makes this impossible. Karen, thanks for all of your inspiration, I really enjoy reading your column.
What a nice depiction of your stem cell harvesting, Karen. Even though it was really difficult for you, at least you do have those stem cells stored away in case you might need them someday. I found it amazing that this technology even exists. To get the hematopoetic stem cells, from which all of our blood cells are developed, to leave the marrow, where blood is made, in such large numbers that they may be 'harvested' is a feat in itself. I know that the neupogen or other compound that stimulates cell growth helps to grow them. And then, if they are returned, the stem cells somehow 'know' that they must return into the marrow, not just stay in the blood. i wonder if anyone has studied this, since to me it seems like a migration. Those cells do have an intelligence of sorts.
Well, the cells are being stored in a solution containing DMSO, a compound that will help them not to burst open, being stored in bags in a vat of liquid nitrogen. That compound has a distinctive smell, and newly infused patients have that faint door for awhile too. Good luck with everything, and Happy Thanksgiving to you and your family!
Went thru the lovely collection process myself in Jan-March 2013 at UNMC.
Stress test, MRI's/CT Scans, Cardiac Stress test, Blood work, Pulmonary function test, etc.etc. Central line placement, Neupogen, etc Multiple meds. Cyclophosphimade, etc. Sick as a dog...then harvest. Aphoresis---A 3 hour 15 minute process where I gave enough for 4+ transplants, more meds...and then allowed to go home.
My body crashed from all I had been thru and at discharge, ( Pun INTENDED!) I had picked up a virus/bug--and I lost control of bowel function and GI tract for 72 +hrs.
3 weeks later--hair came out in clumps, soon doing Yul Brynner imitations, eating unsalted crackers non-stop, and started revlimid and resumed the Zometa (Bone juice).
I had consented to "collect" stem cells--however I was not committed to "transplant". I got a bit of "urging" to do the transplant process, too. Luckily, I said "not now, please"....about 15 times!
I later read with deep satisfaction, of the Mayo stratification of treatment, which backed away from a strict view of transplantation (early)--to a quality of life based "It's okay to delay SCT, with advent of the newer meds...and maybe NOT AT ALL? ".
My labs are all good, my t (11,14) disease has not mutated, and other than side effects from Velcade and revlimid, I am about 80 % of my former self.( Chemo brain really became prominent for me after Neupogen /Cyclophos--PN was from Induction of Velcade--fatigue has been there for 3 years--prolly myeloma itself and the treatments, some anemia persists.)
I am looking forward to a new total hip in Feb '14. It seems I stood too close to a Linear accelerator...(about 45 times in late 2012)--and got the GY award ...so I get a new hip, as my kewpie doll.
Ins paid for my collection and storage.
With Obamacare ( no pre-exisitng) now--does this mean the Hotel bill my cells are racking up, is paid by the new Ins Co. !!?? I sternly told the little red bastards to leave the room frig/bar alone and not abuse the room service privileges,...but they do have a mind of their own!
Time to go put the Spiral ham in the oven, and fire up the Electric Roaster for the big bird, now that the pies are done.
Happy T-day you "myelomers"...and if you see them--tell my Stem cells to behave !!
R
PS--do you consider yourselves "Nerds" now, cause we all sure throw scientific concepts and terms around like free tootsie rolls at a parade....just a thought.?
In response to Joe and to give him some encouragement, my husband had his stem cell transplant at MD Anderson in July 2012 at the age of 77 and flew through it. Walked every day, no mouth sores, nausea or diarrhea and left the hospital 8 days ahead of schedule. His transplant oncologist called him "phenomenal". There were also 2 other men in their 70s who were also doing as well as my husband.
My stem cells were harvested over two days as an outpatient in Jan. 2012, two weeks prior to my auto transplant. In my case I had 16G peripheral IV's inserted in each antecubital vein (in the elbow). I had to remain in the healing position (like Christ on the cross) for 8 hours daily, but it was worth avoiding a central line. The surrender moment for me was having to pee in a bedpan, directed by the nurse. I harvested over 10 million stem cells, and used less than half so far. The procedure was painless, but the night before, the Neupogen used to stimulate their availability resulted in an unusual deep pain, especially in my hips.
A fascinating story I learned during this process was how the apheresis machine used to separate the stem cells was developed some 50 years ago by an MIT engineer. His daughter developed acute leukemia, and so he devoted many years of his life perfecting the machine that was used on her. Although she did not survive her disease, many others have benefitted from his discoveries, and the technology of the machine has changes little since then.
The need for auto transplants seems to be gradually waning as a result of better novel agent therapy. It is still being debated, and will be again next week at the ASH meeting, but I am glad I had mine. Although I developed a recurrence just 10 months later, related to a BRAF mutation, I believe there are still benefits of having it for most MM patients, to consolidate any therapy. May it prolong remission for many of my fellow patients!
En el 2009 a mi esposo le diagnosticaron mieloma múltiple comenzó el tratamiento con talidomida y dexa, durante unos 7 meses luego descansó por los efectos secundarios, su banda monoclonal habia bajado bastante, cuando dejo por un tiempo el tratamiento su banda empezó a subir nuevamente, entonces comenzaron el tratamiento con velcade ymás ciclo mas dexa, pero le agarró una neuropatía en los miembros inferiores, fue muy doloroso. Luego se decidió hacerle un transplante autólogo. Esto fue hace dos años y ya su banda comenzó a subir nuevamente. Se atiende en el hospital Italiano de Buenos Aires. Está bien atendido, pero siempre creo que hay algún lugar en el mundo que puede hacer algo mejor por él. Y ese lugar no se cuál leo, leo pero nunca me decido ir a otro lugar. El tiene más celulas madres para otro transplante pero no le gusta la idea de pasar por otro transplante. Me desespera la situación porque quiero ayudarlo pero no se cómo, si alguien quiere sugerirme algo lo voy agradecer. Les Mando un abrazo a todos los que padecen esta enfermedad y a los médicos que hacen todo por sus enfermos.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
"2020 Fundraising: Goals And Updates" page