The longer I take to post updates, the more there is to report. Unfortunately, the great majority of that is bad news. Pembro and Pomalyst have not proved to be a winning combination, nor does the current replacement (as of early March): Velcade/Nelfinovir (aka Viracept)/Dex (40 mg/week). Velcade did do me some good a couple years ago, but now even teamed up with other meds, it seems to have lost its efficacy. My numbers are out of control: IGG is 7550 mg/dL, and M-spike is 7.1 g/dL. That’s pretty deadly. I’m creaky, slow, and prone to nosebleeds, and my activities outside the house are more or less limited to grocery shopping, the occasional movie, and medical appointments. My oncologist is clearly thinking that I cannot maintain the present course of treatment, and that I should seriously consider a clinical trial that would engineer my T-cells to more aggressively combat the myeloma cells clogging up my bloodstream. The trial is complicated with a tricky schedule, it could make me much sicker before any perceived improvement, but I don’t have too many options left at this point. I had been hoping to travel at the end of April, just a quick trip to an island for a change of scenery, but that’s been shelved for the time being. Some days (especially recuperating from the dreaded weekly “dex crash”), I can’t get off the sofa.
If you’d like to participate in, or otherwise contribute to, the Philadelphia Multiple Myeloma Networking Group’s annual fundraiser (April 22), please go here. Thanks for listening.
That didn’t last very long. Empliciti and Revlimid have been given the heave-ho, even before my latest full tests of December 28 showed an M-spike risen to 2.3, and an IGG level of 2690 (way above normal). My joints are creakier, especially upon waking…there go my hopes of reducing painkiller intake. So the oncologist now has me on one of the latest immunotherapy agents, namely Pembrolizumab (or also namely Keytruda…the dual-label nature of these drugs drives me crazy), as of January 6. The best thing about Pembro (so far, as it’s too soon to tell if it’s doing me any good) is that the infusions (every other week) take less than an hour, the easiest schedule I’ve had yet. Meanwhile Revlimid has been replaced by Pomalidomide (Pomalyst) in the oral meds department, as well as a bump in dex dosages from 28 mgs per week to 40. (Clinical trials have shown Pom/dex to be effective adjuncts to Pembro.) Side effects appear to be a wave of fatigue about 24 hours after infusion, and some upset-stomach action, but nothing drastic.
I’m to be tested again in about two weeks, will post results when I get them. Likely this is all about as boring to you as it is to me.
November 3 was the last of eight consecutive weekly infusions of Empliciti (always with eight mgs of dex) and the result so far is…nil. My M-spike was 0.8 g/dL when measured before I began the chemo in early September, and that’s exactly where it was at last count, on October 31 (or three days before the final weekly dose). Meanwhile, during approximately the same span of time, my IGG level fell very slightly, from 1190 to 1130 mg/dL, after hitting a low point of 975 on October 6 (numbers above 2000 are considered elevated). Who knows how I’d be doing with no therapy at all?
Per protocol, I continue Empliciti, but now only every other week, with the same dose of dex, and also now with the addition of Revlimid (which I haven’t been prescribed for a little over two years), five mg/daily, 21 days on, seven off. I’ll know in about two weeks what the results are. Meanwhile, side effects from the Rev seem worse than the Empliciti: the usual grogginess, upset stomach, scatter-brain. The tale continues in the telling.
Oh, and I’m fundraising for myeloma research again. Please click here to donate, with my thanks.
Since the Kyprolis trial went bust last year, I’ve been: hospitalized for kidney failure complicated by pneumonia (early in Dec ’15), which heavy chemo finally beat down, then on Selinexor pills (which did little but make me more nauseous than nearly any previous treatment) and daratumumab (briefly) before the myeloma really began making a concerted effort to kill me in April and May. I was in and out of hospital several times, with greatly elevated M-spike and calcium levels, delirious at times, scaring relatives, hospital staff, and eventually myself with my ravings. The docs threw all sorts of chemo at me, including D-PACE, none of which was able to provide anything but short-term results. So I finally gave in to my oncologist’s long-time hint that I was due for a second stem-cell transplant, and entered the hospital AGAIN on May 31st.
The transplant team was able to use blood cells culled from my original SCT and frozen way back in 2006. (I still have a hard time believing those suckers were really on ice somewhere all this time, sitting patiently in the dark.) Didn’t suffer any more side effects than expected, so the time in hospital was only minimally horrible (fatigue, nausea, green diarrhea). Was discharged effectively before the end of June, and spent most of the next month recuperating at a sibling’s house. As of today, I am officially in partial remission, M-spike at 0.7, and most other blood counts in the normal or near-normal range. RBCs remain low so I’m tired most of the time. In mid-September, a little over 100 days post-SCT, I began weekly infusions of elotuzumab (Empliciti) with small doses of dex. This treatment appears to be holding my numbers steady for the time being, but is not so far ridding my body of the last traces of myeloma, as we’d hoped. But I’ve got some breathing room for the moment.
My myeloma essay “Never Happier” (a condensed version of a much longer piece) is now online at Apiary Magazine, under the auspices of their recently redesigned site. Thanks, Apiary, for looking out for Philadelphia writers.
In the autumn of 2014, my M-spike and related protein numbers began creeping up, even after switching from nightly oral doses of Revlimid/dex to Pomalyst/dex. So in late November, my oncologist persuaded me to enter a clinical trial involving experimental doses of Kyprolis, along with twice the amount of dex I’d been taking for years. This got quite effective results right away, along with the side effects you’d expect from doubling your intake of dex. (I did not enter any police blotters, but it was a close thing.)
But in August of this year, the steadily renewed rise in blood test numbers could not be denied. (M-spike currently stands at 1.6. It was 2.7 when the clinical trial began, and 0.4 at its lowest point.) The clinical trial was halted and I am now taking Cytoxan (note the “tox” in there, no joke), along with the same doses of Kyprolis/dex as in past several months. As is so frequently the case, we are now in wait-and-see mode. Catch me in about a month.
Amazon today sent me a royalty check for the short story I placed in their Kindle Store, mostly as an experiment, some while back. A three-figure royalty check! Never mind the decimal point between the first and second figures. Yes, some people have actually spent 99 cents to download “The Best Performance by an Actor in a Leading Role.” If you would like to participate in the e-fun, just go to: http://tinyurl.com/n5wjush.
One of my pics made The Inquirer’s Talk section today (online). You’ll have to scroll down a bit through the “Snow Day!” gallery: http://data.inquirer.com/thetalk/
I thought it time for another one of my occasional posts…this one specifically for anyone in the Philadelphia area who may be recently diagnosed with myeloma, or who knows someone (closely, not-so-closely) with myeloma.
The Philadelphia Multiple Myeloma Networking Group (PMMNG) has, since 1995, been helping myeloma patients and their loved ones cope with the issues presented by this still-incurable disease. It meets the second Saturday of every month (except August) in the Ralston House, 3615 Chestnut Street, near the campus of the University of Pennsylvania. For more information, please visit the website.