November, 2021 Update: 5 years, still alive…
Today, November 28, 2021, is the 5 year anniversary of my diagnosis. I guess it’s a significant milestone to have made it this far. If you were diagnosed with Multiple Myeloma in the 90’s, you’d be very lucky to be alive 5 years later.
I haven’t been updating this blog because it has always seemed like I was waiting for some information to provide clarity. My conversations with people have gotten uncomfortable because they think I may be hiding something bad (kind of true). My friend Tim bluntly told me to update this blog (despite him not updating his blog for years. :)). So here’s all the news:
I had a bone marrow biopsy in December, 2020. The results got lost, and I didn’t end up getting them until around March. That was concerning, especially since I started feeling really fatigued in Feb/March. I finally got them after asking multiple times, and it was good news: My Minimal Residual Disease (MRD) was measured at 324 Parts Per Million (PPM). This was an uptick of 1 PPM vs my Feb 2020 BMB, which came back at 323 PPM. If I was guaranteed to only grow 1 PPM per year, that would mean it would take thousands of years for Myeloma to kill me. I’d gladly take that deal.
Unfortunately, other markers started telling a different story in March. My March labs showed abnormal on the Immunofixation Electrophoresis test, meaning that there was some cancerous protein detected in my blood. Another test that I do regularly, Protein Electrophoresis, that measures the amount of cancerous protein (this is the M-Spike, one of the most important markers) came back negative. Normally these would both have to be correlated to indicate a loss of remission, so while I was worried about it, it could have been a false alarm.
In April, the Protein Electrophoresis test came back with a measurable M-Spike of 0.2 g/dL. As I’ve mentioned before, when the M-Spike gets somewhere between 0.5 and 1.0, that’s when it’s officially a relapse, and when it’s time to start treatment again. Here’s what it looked like through July:
and then from Late July onward:
The results are in a different format because I started getting my labs at a different hospital (more on that below), but it tells a good story. I went from an M-Spike of 0.2 g/dL to 0.3, then back down to “Detected but not quantifiable.” each test since late July has been accompanied with a note like this one below:
So that’s sort of good news.. I’m NOT in remission, but I also haven’t relapsed. If I could stay in this limbo forever, I’d gladly take it. I feel good aside from some nagging lower back pain that is disc related (not myeloma).
All of this was a huge mystery because with a 325 PPM bone marrow biopsy, you’d expect to not have any detectable Myeloma in the bloodstream. (my doctor says that once you get to 6000 PPM, the average would be 13 months to relapse). The problem with the Bone Marrow Biopsy is that it only looks in one spot (the pelvis), so it’s possible that there could be some hotspots somewhere. I wanted to get down to the bottom of it.
In April, I also started having some nerve pain in my neck/spine. That was scary as at diagnosis I had lesions in my cervical spine (neck). I went back to my back surgeon and we did an MRI of the spine. It came back perfectly normal, and even noted that the lesion (hole in the bone) in C2 was decreased in size since my previous MRI in 2018, and the lesion in C1 was completely gone! (great news) It turns out that my neck pain was bulging discs between C5/6 and C6/7 that were putting some pressure on my spinal canal. This went away in August, and the only disc issues I’m having now are in my lumbar (lower) spine. I’ve dealt with this over the years, and the solution is stretching, posture, and not lifting heavy things.
I then did a skeletal survey in August and had it reviewed by an orthopedic surgeon. Everything looks good. My lesion in my left femur has improved quite a bit. The doctors at the new hospital didn’t have access to my previous xrays, and when I pulled them up on my phone they all gasped at the same time and said something to the effect of “wow, that has really grown back a lot.” See the before/after below, it looks like it needs another 5 years or so to fully resolve, but it looks/feels great.
So no obvious lesions anywhere, the only other test left to do is a PET/CT scan which would find any active Myeloma hiding in bones or otherwise.. We did that in September, and it came back negative. My doctor says that the recurrent M-Spike is likely some “light marrow involvement” and that unofficially we can look at my Lambda Light chain movement as a proxy for the cancer growth. While my light chains are in normal range, the lambdas have increased a bit:
This is hard to read because the hospitals use different units, but you can see it peaked in July and is going back down, so if this is our proxy, that’s good news.
Next up, I’m doing my annual Bone Marrow Biopsy on Nov 30, and expect that I’ll get the results 3 weeks or so after.
All of my other labs have been immaculate this year, so there’s nothing else to watch or worry about other than the M-Spike, which is currently “detectable but not quantifiable,” meaning that it must be less than 0.1 g/dL. Also worth noting that the FISH test that is also done with the BMB sample again came back with none of the known mutations that make Myeloma more aggressive. Additionally, from reading the report that comes along with the MRD test (called ClonoSEQ) it doesn’t look like my Myeloma has mutated in any way. I still have the 4 original clones that I was diagnosed with, and no others.
I have discussed with my doctor the next step for if/when I relapse, and we have 3–4 really good options including one clinical trial. None of the treatments we are considering were available when I was diagnosed. The myeloma toolbox is getting bigger, and that’s a great thing.
The reason I’m getting my labs at a different hospital is that we moved to Denver, Colorado in July. My specialist at UCSF is still my primary care doctor, but I’m now just meeting him via Zoom. I go into UCHealth here now, and have a local specialist too. It’s nice to have two specialists looking after me. UCHealth has a much nicer facility, but the parking situation is a bit ridiculous. :) They’re building a new parking deck, so that should be resolved in 18 months or so…
Colorado is nice. One of the few nice side-effects of COVID is that we’ve proven that for some jobs like mine (in tech) we can be just as effective (or more) working from home full time. Rachel and I were toying with the idea of leaving the Bay Area and started house hunting in November, 2020. We looked at a few cities, but Denver won out and we fell in love with a house that was being built. We got into contract in February and got to customize a lot of the house. We sold our house in CA and drove cross country with two cars and three dogs while I was on a sabbatical from work. There was a stressful 2–3 week stretch where we were staying in Hotels and Airbnbs, but we finally closed on the new house in July and haven’t looked back, although it did take us a few months to get unpacked.
One of the benefits of living here is the proximity to the mountains. We just spent a few days in Breckenridge snowboarding. There wasn’t much snow, but there were a few runs open. We took a private lesson, and now have lots to practice. It’s kind of crazy to learn that you’ve been doing things wrong for 25 years, but both Rachel and I feel like we got better. Vail is up next in December, and we have another lesson booked!
Our pups are loving their huge yard and the new house. They don’t like the stairs, though…
