Myeloma Beatdown

Blogging again.

June 26, 2019.

After a lovely, easy, three-year ride on a two-drug myeloma regimen, my right shoulder was hurting and a PET scan showed a lesion (a collection of myeloma cells showing bright red) in my right scapula. M-spike and IgG hadn't changed, but Lambda Light Chains had more than doubled. The myeloma was back. It never gives up.

My Mayo doctor ordered radiation treatment of that lesion, and added dexamethasone to the two-drug therapy. Now, a month later, the ten radiation treatments are complete and I'm taking the dex. Last week's blood test showed Lambda light chains back down to normal again, a very good sign.

Another PET scan and doctor's appointment in a couple of months will tell us whether that scapula really is better. I think it is, because my shoulder doesn't hurt any more. It itches a little, because the radiation lightly toasted the skin over the scapula, but I don't mind and it will heal.

A lesson learned:  A lesion formed but neither M-Spike nor IgG went up, which means that at least some of my myeloma is "nonsecretory" (doesn't secrete monoclonal proteins).  Therefore we'll have to pay more attention to Lambda Light Chains. Maybe I'll need more PET scans too?  I wonder if there's a limit on those these days. Checking Lambda Light Chains is just a simple blood draw for a lab test, though it's nowhere near as comprehensive as a PET.

Good News Again

Stable:

Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months.  That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago.  M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday.  IgG was 536 mg/dL, about where it has been for more than a year.  This is wonderful.

The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month "until disease progression."  So far so good.  Darzalex is an infusion that takes several hours, but I get a blood draw, then a visit with the hematologist, and finally the infusion, and I'm still out soon after noon.  Some people bring a book to read - I bring my laptop and it's no problem at all.

I take it easy for the rest of the day, and life is back to normal the next day.  Darzalex is given with some prednisone (or dexamethasone) to reduce the likelihood of an infusion reaction, and I do feel some side effects from that steroid, but none from the Darzalex.  Life is good.  28 Infusions of so far - I wonder what my life would have been like without that potent, innovative new medication.

Pomalyst has been part of my treatment regimen, 2 mg daily, for all but one of the last nine years.  For the past two months my doc and I have tried cutting that to 2 mg for 21 of each 28 days, with no discernible increase in M-Spike or IgG.  Perhaps we'll reduce it more, we'll see.

PET Scan:

This was encouraging too.  "Essentially complete metabolic response of lytic bone myelomatous lesions to therapy. No new FDG avid lesions."  In other words, the old myeloma hot spots are gone and there are no new ones.  Three other findings were worthy of note:

1. Some inflammation at the bottom of the esophagus.  This matches my own symptoms of occasional acid reflux.  Something to deal with.
2. Stable, chronic thyroiditis.  Yup.  Dealing with it.
3. "Reactive FDG activity at the origin of the right hamstrings."   No kidding!  I've been battling this running injury all summer, and my sports doctor recently used ultrasound imaging to diagnose it.  He'll be happy to hear that the PET scan confirms his diagnosis.  Cool!  I've requested a disc with the actual PET images (always do), and can't wait to see it myself.

Transplant:

In 14 years with myeloma I have not had a transplant, because for all of that time the medications have kept my myeloma stable.  I asked the doc if there was any reason to think about collecting stem cells for an autologous SCT now, and he thought not.  I'm already 76 and currently on a good regimen, with several new therapies to try when the current one fails, and with more therapies in the FDA-approval pipeline.  By the time those options are exhausted, I'll hopefully be too old for any transplant doctor to consider me a good candidate.  So now my goal is to become the myelomiac to live the longest without a transplant.  Well, somebody's got to do it.

PET Scan Looks Good

Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine.  Last Wednesday's PET scan showed that all five lesions are significantly decreased, and most are gone.  One isn't even mentioned.

This is excellent news.  We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn't guarantee freedom from bone damage.  With these PET results, we can be pretty sure that no damage is occurring.  As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra - looked like about BB size - damage that did occur before this regimen, but probably not bad enough to put the vertebra at risk of breaking.

So what is this potent regimen?  Please note: I am not a doctor.  This is working for me, but might not for you.  I am taking Pomalyst (pomalidomide) orally, 2 mg daily, 28 days of 28, and receiving infusions of Darzalex (daratumumab).  At first I received the Darzalex weekly, then every other week, and the last three have been four weeks apart.  According to the Darzalex prescribing document, these monthly infusions continue "until disease progression."

PET Radiology Report

I'm all for that.  Notice, though, the presumption of disease progression,  Myeloma always figures out a way.  So now that the myeloma is stable, the hope is that the period of stability will last a long time.  Happily, neither medication brings serious side effects with it.

With the Pomalyst and darzalex I am also taking dexamethasone (DEX) 12 mg on the weeks with no Darzalex infusion.  I asked Dr WG if I could stop the DEX, but he said that he prefers to ramp it down slowly.  He voiced the scenario that I have feared from the outset - a broken vertebra would most likely put an end to my running lifestyle.  As he suggests, I will happily (or grumpily) take 8 mg once weekly for the next month at least, before reducing it further.  DEX is no fun, but 8 is better than 12.

Overall the news is good, and life is great.  Before long we'll be off to Philly, to run the 100th marathon with myeloma.