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Pat’s Place: Tick Tock, Flip Flop
By: Pat Killingsworth; Published: July 10, 2015 @ 6:18 am | Comments Disabled
The July 4th holiday is behind us. I spend it in Iowa City, harvesting stem cells for my upcoming autologous stem cell transplant.
To review, after my fourth relapse – and a number of short-lived therapy options that would only work for months, not years – I made the difficult decision to try a salvage auto transplant, but only because it was going to be modified, as I described in my April column [1]. I had a failed transplant four years ago. The best I got out of it was some resensitization; drugs that had stopped working before the transplant started to work for me again.
Clinical trials are not really an option for me. Even though I still have a faint M-spike, I’ve officially become a nonsecretor; tough to get in trials that way. As I mentioned in my May column [2], I think trial administrators like patients that are easier to track.
I was able to harvest almost nine million stem cells in four days last week! I never expected to get so many from this tired, beat up body eight years post diagnosis. Neupogen (filgrastim) helped get the party started, but Mozobil [3] (plerixafor) was the star. It really is an amazing drug.
I already had 6.5 million stem cells on ice, so I wondered why my doctor had me harvest one additional day. I figured he wanted some fresh ones in the bank.
It’s unusual, but my specialist wanted to infuse a whopping 10 million cells back after hitting me hard with two infusions of high-dose melphalan [4] (Alkeran), ten ongoing days of thalidomide [5] (Thalomid), four Velcade [6] (bortezomib) infusions, and 20 mg of dexamethasone [7] (Decadron) daily just to make it a party!
It’s tough to take – the effects after the first melphalan infusion and a couple of days of the others have started to kick in, along with a strange buzz you get when your white cell count is through the roof; a result of revving my bone marrow up for a week. A bunch of extra stem cells circulating around in my blood, looking for a home or to be “milked” probably didn’t help, either!
That’s the background.
I saw my specialist this past Monday. My white counts starting to settle down from my stem cell harvest, which had ended last Thursday. I was feeling a lot better. Physically and emotionally, I had prepared myself to start with what would be a difficult month.
I expected an “attaboy” and a quick review of the days to come.
But there was an unexpected twist. Instead, my doctor proposed I return in three months for a second, or tandem, transplant. He was disappointed that two powerful FDA-approved drugs I had received – Kyprolis [8] (carfilzomib) and cyclophosphamide [9] (Cytoxan), together with dexamethasone – as induction for the modified transplant hadn’t stopped several large, new lesions from forming.
To be fair, I should mention that a second bone marrow biopsy in four months, this time in my sternum, had found no myeloma cells. And when they harvested my cells, most if not all of the paltry 1 percent of the plasma cells they identified were normal; no cancer.
So to say my meds weren’t working may not be quite accurate; they stopped progression of several existing lesions, but couldn’t prevent several new ones from starting or two prominent ones from getting larger.
Sort of a mixed bag, wouldn’t you say?
But a tandem transplant? That really threw me for a loop! My doctor felt a second transplant would squelch most, if not all, of the remaining myeloma cells in my lesions.
The thing is: that’s what he said my single, modified stem cell transplant would do. Why the change?
My doctor felt based on the results from my short (too short?) 10-week induction therapy, maintenance might be much harder – and require more intensive therapy – if I didn’t return in three months to do a second transplant. Having harvested some bonus cells would allow him to perform back-to-back transplants.
I was taken completely by surprise. “And Pat,” he said, “We need your answer in two days so I know how many stem cells to give you,” adding “Of course, the decision is up to you.”
He hadn’t given me very much time to make that overwhelming decision: To return home and get on with my life, allowing my other specialist at the Mayo Clinic in Florida to take things from here? Or to come back to Iowa City this fall and get “nuked” again?
So many thoughts and concerns: the extra toxicity and travel; precious time spent away from my family. But he seemed so sure a second transplant would do the trick. And isn’t that what I came here for in the first place? To let an expert try and buy me a few extra years of precious life?
Apparently, if I agreed to a tandem transplant, he would only infuse five million cells now, saving the rest for after my second.
Two days? My sister, who was helping me this week as a caregiver, suggested waiting for 10 weeks, getting another scan, and reevaluating things. My wife Pattie agreed, although I could tell she was leaning toward sticking with the original plan.
I received dozens and dozens of comments and opinions about what to do from fellow patients and others in the myeloma community. I have some great questions to ask the doctor when I see him to try and make a decision later today (I am writing this column on Thursday, July 9).
My specialist is a brilliant physician, and he’s been doing tandem transplants for well over 20 years. Yet, had I known I would need to do tandem transplants, I would never have made the decision to come to Iowa.
I can tell from talking with other patients that I am an outlier here; most all seem to be doing tandem transplants. But I’ve seen the stats, and they aren’t good. Yes, tandem transplants may help some patients who only achieve a very good partial response after their first. But we don’t know if that will be me.
Tick tock, flip flop.
If I had to make the decision today, I’d stick with my original plan. One modified transplant. But if my specialist can answer my list of 10 or more questions to my satisfaction – and if I can convince him to wait and see what happens down the line – I would consider coming back.
If I’ve made a decision, I’ll share it with you next month. Or we may not know until September.
Tick tock, flip fop.
Until then, wish me luck! I’ll be sucking on ice to try and prevent those pesky mouth sores and eating anti-nausea meds like candy.
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [10].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Article printed from The Myeloma Beacon: https://myelomabeacon.org
URL to article: https://myelomabeacon.org/headline/2015/07/10/pats-place-tick-tock-flip-flop/
URLs in this post:
[1] column: https://myelomabeacon.org/headline/2015/04/04/pats-place-decision-made-im-going-to-transplant-again/
[2] column: https://myelomabeacon.org/headline/2015/05/14/pats-place-multiple-myeloma-clinical-trials/
[3] Mozobil: https://myelomabeacon.org/tag/mozobil/
[4] melphalan: https://myelomabeacon.org/resources/2008/10/15/melphalan/
[5] thalidomide: https://myelomabeacon.org/resources/2008/10/15/thalidomide/
[6] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[7] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[8] Kyprolis: https://myelomabeacon.org/tag/kyprolis/
[9] cyclophosphamide: https://myelomabeacon.org/resources/2008/10/15/cyclophosphamide/
[10] here: https://myelomabeacon.org/author/pat-killingsworth/
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