Whining About DEX

Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says "everything works better with DEX."  I've taken it before, and not liked it then, but this most recent experience is something new indeed.

Sunday night I took the "usual" 40 mg dose, ten little 4 mg tablets, at bedtime.  In the past this has worked OK for me because the DEX doesn't interfere with my sleep that first night.  And it didn't interfere Sunday night, I slept well.  Monday, then, was "DEX day," full of energy, as if 200% caffeinated all day.  I got a lot done, including an energetic 4-mile walk/run.

Trouble started at bedtime Monday night.  Never in my life have I had such heartburn - was that from the DEX?  I suppose so, I think so.  I slept very little that night, awake because of the DEX and forced to sit up for part of the night to ease the acid reflux.  In the morning my esophagus was still inflamed, warm coffee causing pain when it reached the bottom.

Tuesday became another DEX day, my body once again on full alert.  I tried for a much needed nap, but no dice.  Again I got a lot done, rounding up materials for a wood duck house that we are building for our back yard, and preparing for our upcoming 93rd marathon, but I felt like I was running on empty.  Tuesday night I did finally fall asleep after a couple of restless hours, but awoke again at 4:00 am only to lie there until rising.

Wednesday was strange.  I felt like someone else, I don't know who.  Not sick, but not OK.  I did finally get an afternoon nap, and Wednesday night I was able to sleep, waking Thursday morning mostly recovered.

I really don't want to have that experience again, especially the acid reflux, which might actually have caused permanent injury at the bottom of the esophagus.  I know that the doctors believe that the 40 mg dose of DEX is more effective than a lower dose, but I wonder if it is worth the unpleasantness and, indeed, the risk.  I can try to manage the acid reflux by finishing the supper meal at least two hours before bedtime, and skipping my usual one beer and all chocolate.  I will take calcium citrate morning and evening, and perhaps eventually take a prescription remedy if necessary - I don't have such a prescription yet and don't know if there really is an effective one.

The current plan is to take the full 40 mg once more this coming Sunday and see how it goes.  Sigh.

In other news I am now taking Pomalyst once again, 2 mg daily.  This can suppress neutrophils, but a CBC on Wednesday showed them at 5.2 k/uL, which is about twice what my neutrophils usually run.  I don't know why - does DEX help with neutrophils?  A quick Google search suggests that it may indeed help, possibly one of the reasons that "everything works better with DEX."  Oh well, let's try one more week.

The Study Is Over

For me.  Sad to say, because this treatment was the easiest I've ever been on, and it has worked well for other people (with other blood cancers).  Yesterday's blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way.

According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good.  However, it does show increased activity in the existing lesions.  For a while we wondered if that increasing activity was "flare," caused by my own immune system attacking the myeloma.  There may indeed be some flare, but we have reached the point where it doesn't matter, because the myeloma is clearly not backing down.

To underscore that point, the blood tests also show progression in the last three weeks.  M-spike is level at 1.5 g/dL, but IgG increased by 9% from 1600 to 1740 mg/dL, the seventh increase in a row, except for one sharp bump up and back down when I was quite sick with the stomach flu. Furthermore my Lambda Light Chains almost doubled from three weeks ago, from 4.46 to 8.60 mg/dL, while Kappa chains went down.  I'm not sure what this means but no one believes that it can be good.

I gave the study a good try, but it's over.  Sigh.  So what's next?

Happily, I do have a little Pomalyst left, not expired yet, so I can start taking that immediately, with the blessing of Dr WG.  I'll also take 20 mg of dexamethasone (DEX) tonight, and then 40 mg Monday night, no doubt the first of many Monday nights.  I like to take the weekly DEX on Monday so that its side effects are mostly gone by the weekend, which is when I run marathons. Also, I like to take it at bedtime because, surprisingly, it interferes with my sleep the least that way.

Dr WG is still considering a second drug to take with the Pomalyst and DEX, or perhaps eventually with Revlimid and DEX.  Daratumumab (Darzalex) is a great choice, though I'm certainly no fan of Janssen Biotech, the company that is "commercializing" it, because of past criminal activity.  Elotuzumab (Empliciti) is a possibility as well.  Pembrolizumab (Keytruda) has also shown promise in early trials with Pomalyst or Revlimid and DEX.  It is FDA approved for melanoma (it saved President Carter), but is not yet approved for myeloma and thus may present an insurance issue.  All of those are monoclonal antibodies, not unlike the study drugs that I have been taking, but with demonstrated efficacy when combined with an IMiD like Pomalyst or Revlimid.

Another choice is an IMiD with a proteasome inhibitor and DEX - the standard of care for newly-diagnosed patients.  Unfortunately, though, I have already tried one proteasome inhibitor, which did nothing for the myeloma but did cause peripheral neuropathy.  Proteasome inhibitors work miracles for most patients, but may not be in my future.  The one possibility is carfilzomib (Kyprolis), as it may be the least apt to cause side effects.

It's great to have choices! I'll post as soon as a plan is finalized.

No More DEX

For over a week I had to take a little dexamethasone (DEX) now and then to manage a severe pain in my back and lower right abdomen.  I don't know for sure why the DEX fixed the pain when Vicodin didn't, but it was magic.  DEX is a powerful anti-inflammatory, so my theory is that something was inflamed and pressing on the spinal cord, and the DEX reduced that inflammation.

If that's what happened, I don't know why the inflammation showed up, or why it went away.  I haven't taken any DEX for three full days now, and I'm glad to be off DEX because it can have serious side effects from long term use.  I may need to take it as part of a future treatment protocol, but not for the current protocol.

I have another appointment at Mayo next week, and a PET scan is scheduled to try to get more information about the possible cause of the inflammation.