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Health update

Published on 40 Comments on Health update

Exciting news! Next week I'll be starting a new multiple myeloma treatment called Talvey, aka talquetamab. Technically, it's similar to the Carvykti CAR-T treatment I had last year, but instead of targeting the BCMA antigen it targets two receptors called GPRC5D and CD3. Because it targets two things it's called a bispecific. Unlike Carvykti, it's not genetically engineered for each patient.

But that's not the exciting part. Like Carvykti, Talvey has a risk of causing cytokine storms and neurological problems, which means I have to spend a week in the hospital so they can observe me as they ramp up the dosage. Blah. But I'll take my tablet and continue to amuse myself with the blog.

For the record, this is now my eighth treatment for multiple myeloma:

  1. Velcade
  2. Autologous stem cell transfer
  3. Revlimid
  4. Darzalex
  5. Pomalyst
  6. Empliciti
  7. Carvykti CAR-T
  8. Talvey

40 thoughts on “Health update”

  11. KawSunflower

    Glad you appear to have doctors who apparently keep up with the medical journals and truly care about finding a treatment that will work for you - and that you are able to persevere, backed by Marian and the cats, not letting any contrarians in the comments distract you from your goal. l.

  15. ashladblog

    My brother (age 66) was diagnosed with MM a few weeks ago and is just starting chemo, bone builder, antibiotics, antifungal, and probably 42 other treatments. He might be eligible for stem cell treatment (not sure if Carvykti or what) early 2025, so it doesn’t seem he’ll have to go on a long wait list like you.

    Regardless, I’m very thankful for you being so open and forthright about your health and treatments. I don’t know if it’s comforting to my brother, but it definitely is to me. Just knowing there are a bunch of potential treatments out there is reassuring. So, best of luck to you and thanks for being a blogger.

  17. Ken Rhodes

    “So he beats on, boat against the current, borne back ceaselessly into the hope of a cure.”

    But so long as he rows on, the hope is still there, and a longer remission is a real possibility. So beat on, Kevin; there a lot of us mentally pulling an oar in your boat.

  18. CEL1956

    Wishing you the very best of luck with the new treatment!

    A friend of mine who made it through bladder cancer got very involved with an advocacy group. One of the more interesting things she's had an opportunity to do is review literature on treatments and write a precis of how the treatment impacts patients - not from a clinical point of view, but from a daily life point of view.

    You could have some valuable insights, having experienced so many treatment regimens. If this is a sort of thing you'd be interested in, you might contact an advocacy group and see if they'd find your perspective useful to know/disseminate. You communicate very well, you don't mince words, and I think other people going through this might appreciate a tour guide.

  20. soapdish

    I'm in the middle of a clinical trial for teclistimab, tho in my case it's a phase two trial with the goal of preventing the smoldering MM I currently have from developing into full blown MM.

    So far, so good; no overly problematic infections (which I'm grateful for but also why I continue to mask up at work), but I have had some skin issues tho not severe other than a poor reaction to an antibactirial I was taking. Topical steroidal cream seems to be keeping things in check currently. Things like simple cuts and whatnot do seem to take longer to heal, tho, and my skin has patches of... weirdness.

    I'm guessing everyone's reaction to these drugs is a bit different but much like history, it echos. I had some minor CRS (I felt fine for about 24 hrs after the injection and then like absolute dog shit for the next 12 hrs) for the first couple of treatments, but otherwise I was able to basically function normally. And for me, while fatigue is a side effect, I find it's more that I just need more sleep rather than a fatigue that lasts all day. OK, so bowel movements can get pretty loose for a bit. Not terrible, but plan accordingly.

    I'm certainly not trying to bispecific antibody-splain this to you since you've clearly been dealing with your situation and its accompanying side effects a lot longer than I have, but if you'd like to bounce something off someone who's going through something similar feel free to reach out.

  23. Dana Decker

    Took a quick look at class C G-protein-coupled receptors (the class that includes GPRC5D). All I've go to say is that medicine has advanced to where we're looking at very complex molecules of many different types. That was wishful thinking back in the 1970s. Improvement in imaging, sequencing, modeling, have been enormous - I'd say largely due to improvements in computing capability.

    We're getting closer to what I call a Tinker-Toy view of life. The (necessary) reductionist understanding of how all the components in the body function and are related to each other. Mechanical, in other words, with mechanical solutions (e.g. create proteins to block/unlock). There is a whole lot more to do in order to reach the finish line. But we'll get there.

  28. zic

    I am grateful for each and every blog post and article you write, and have been for many years.

    Thank you, Kevin.

    I'm wishing for many more years of your excellent insight and analysis. And kitty photos and star photos and travel photos. And charts. Thank you.

  30. pmdello

    Our treatment history with MM is similar. I’ve had all the usual drugs along with a SCT and Abecma CAR-T. Recently started Isatuximab plus POM. Perhaps Teclistamab is in my future. I’m 78 with a constitution resilient enough to tolerate these toxic remedies. You, too, seem strong enough to fight back. Good luck with the Talvey protocol!

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