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  • Writer's pictureBostnMike

"What Comes Next?..."

Updated: Jul 28, 2023

Bonus points to all the theatre nerds who get the title and photo connection for this post... for the rest... Check out Hamilton. You're welcome.


There are a couple of quotes that, when mashed up, pretty much spell out the answer to the title's question.


“The best is yet to come.” and "It's always darkest before the dawn.”

- Frank Sinatra - Thomas Fuller


So with that, I come bearing all kinds of news, updates, and some insights into what comes next in my treatment plan. And I’ll apologize in advance for this post being a bit more “clinical” than most of my musings… however, most of the questions I’m getting now (other than “How am I feeling” is … “What’s next?”). As we say in the “enablement biz,” the best way to learn something is to teach it… so writing this has been very helpful to me and should provide more clarity to all of you.


As phase 1 chemo continues to do its job, the cell counts are all trending in all the right directions, and the end of Intensive Induction therapy is in sight… the last day of treatment in phase 1 is July 10th.


As a reminder, the focus of phase 1 is to reduce the cancerous plasma cell counts by 90% (or more). So that my stem cells can be harvested and converted into a “healthier” version of my bone marrow. And the process has pros and cons. Since these cells can’t completely be removed, it’s not a 100% clean bone marrow. However, because they are my own cells, there is no risk of donor rejection, and my recovery time is cut by more than half! Also, since there is no cure for Multiple Myeloma (today), there is the possibility that the condition could resurface. So having my own stem cells “in the bank” also eliminates the need for a donor in the future if I need a 2nd transfusion.


With those risk factors understood, and while the specific dates are not scheduled yet, I have a directionally correct timeline… and the calendar should start to populate in the coming week(s). This is what I can expect in phase 2:


1. New Baseline and “readiness” testing:

  • Blood tests

  • Chest X-ray & EKG

  • Pulmonary function testing

  • 2nd Bone Marrow Biopsy

  • Pet CT Scan, MRI, and related imaging

2. The Bone Marrow Transplant:

  • Preparation

  • Harvesting and processing of stem cells for transplant

  • Bone marrow transplant

3. Recovery (one word… several months).


The testing is straightforward and probably does not need a lot of explanation. Other than to explain the timing. After the last several months of chemo and immunotherapies, there is a natural recovery time that needs to happen before we can move to step 2 in the process. That period is ~4 weeks. During that time, all the baseline testing is done.


Step 2 (Bone Marrow Transplant) will begin after the preparation process. Since stem cells “hang out” in the bone marrow, the first step is to use a medication that serves two purposes. One, to increase production, and two, to push them into the bloodstream for collection. The first three doses are done at home, and the last 2 in the hospital.


On “Stem Cell Collection Day(s)” a.k.a “Apheresis” (kind of like dialysis). My blood is run thru a machine where stem cells are separated and collected via centrifuge, and then the blood is warmed and returned in a looping process. How long does it take? Well… each day is 6 hours. 😊 And remember, they are looking to collect enough cells to be able to do the transplant twice; in general, it’s 1-2 days but can take up to 3.


Once they have sufficient stem cells, “north of 8 million,” we move to Transplant. I will get a high dose of chemo, and then later, the new marrow from my stem cells will be introduced. And everything leading up to that… was the easy part.


There’s no sense in sugarcoating it; what comes next is a rather hard-core recovery that will ultimately take several months, with the first few weeks being the worst. There's a significant risk of infection/illness as all the immunity I've built up over the last 50+ years is wiped out by the chemo used in this process.


The treatment is handled as “outpatient,” but really, it’s like “day-hospital,” and I will be going into the Transplant Clinic every day for care and coming home to sleep. While the exact number of days will completely depend on how I respond and how quickly I recover, in general, I’ve been told to expect “discharge” 3-4 weeks after the day of the transplant. And that the first two weeks are going to be the roughest…


The long steady climb from there will ultimately take several months as my immunities build, vaccinations are reintroduced, and ongoing treatment will be done to keep the myeloma in remission for a long, long time.


But like with phase 1, I’m focusing on what’s in front of me now, not what will come in 6 months or a year from now. I have tremendous trust in the medical team at Duke and every confidence in the science. My support network is amazing, and in phase 2, that will be more important than ever.


It’s been a lot to process, and mentally I still feel like I’m in a good place. I know it won’t be easy; nothing worthwhile ever is. I’ll share more, including a more concrete timeline, as soon as the dates are locked in.

Thank you all so much for your continued support, it means the world to me, and it has made every step in this journey so far easier, knowing that none of it is alone.


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1 commento


Greg Sheppard
Greg Sheppard
26 giu 2023

💙

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