Wednesday, March 1, 2017

Latest lab results...all good. Plus an interesting side effect of Zometa.

Hello, friends! I hope that this blog continues to be of interest to some, even though updates are less frequent. Live chugs along, with family, work, good wine, bad golf and music. And in the background noise there is my diagnosis, not yet completely excised from my life but relegated to a minor role at this point as I continue to wait out the 10-year "all clear" whistle that will arrive in September, 2019.

On that note, most recent labs are negative for myeloma and everything looks good. For those into super detail, my IgM (one of the protein types that gets clobbered with transplants) remains low and may never recover, but IgG (where my bad protein resided) and IgA are normal and my immune system appears to be working fine.

I have spent the last couple of months in a state somewhere between inconvenience and agony from what turns out to be a pinched nerve. It came out of nowhere in December before a family trip and it effectively sidelined me from what was to be a full week of activities in Hawaii. It was actually pretty painful, requiring serious painkillers to get even 3-4 hours of sleep. Tests indicated it was a nerve with the likely culprit being C5-C7 vertebrae, and sure enough the MRI showed two bulging discs pinching the nerve there. The only real solution is time and physical therapy, unless I was spinal surgery which I was advised against since it only moves the stress to other vertebrae, and limits range of motion.

Bear with me, as this has some useful information for those on bisphosphonates...

So I learned that nerves don't just sit there in your body -- they are directed through the body through "ports" in bones near the spine (presumably the shoulder area). When the body moves, the nerves need to be able to slide freely through these ports. I've got bilateral narrowing of these ports -- from the bisphosphonates. It's not a problem on my left side, but on the right side, it's an issue, and combined with inflammation from the irritated nerve, it's accentuating the issue with the pinched never. Something to consider.

There are all among the "high class" problems that I waved away at the time of my diagnosis, and I continue to be very thankful that I'm worrying about such trivialities.

For the moment, I'm on anti-inflammatories, plus Gabapentin for nerve strength (odd that I never took this during primary therapy, but I was fortunate and never experienced much neuropathy). This, plus the PT, will hopefully be enough to set things right.

I plan on returning to Mt. Sinai in late June or early July for my next follow-up with Dr. Barlogie, who is now licensed to practice in New York, which is terrific. I will likely have another set of labs to report on in the meantime. Otherwise, steady as she goes!

I continue to be thankful for the opportunity to counsel others with Myeloma; I still speak to anywhere from 5-10 patients a week. Please reach out to me if you need help!

8 comments:

  1. Glad you continue to resist progression of MM. I am on Zometa and receive quarterly infusions. I did not know it can lead to narrowing of nerve pathways. 13 months ago I had spontaneous nerve pain above my left ear. The pain was so severe, I went to the ER, worried I had a brain tumor. But, after scans etc., it turned out to be a pinched occipital nerve, which exits from the spinal column at C3/C4. Rest and anti-inflammatories resolved the pain. However, there is still some numbness. It seemed a mystery until now. Given my history with bisphosphantes, I suspect you are correct in pointing the finger at the Zometa.

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  2. fyi gabapentin is a pain reliever it doesnt 'strengthen' nerves

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  3. Hey Nick! I was reading an investment article about Bluebird Bio (and their supposedly very promising bb2121 treatment for multiple myeloma), and figured I'd swing by and see how you're doing.

    Anyway, I'm very glad to hear everything is still going well overall, still in full remission, and hope to see you at PPUSA in September.

    Take care,

    Craig

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  5. Hi Nick, I don't know if you've tried alpha lipoic acid. It might help a bit if you haven't. It has helped me with knee nerve issues when I had a knee replacement. Glad to read you are still in remission. My tenth year will be in 2020. My Dad on the other hand has just passed the 25th year marker. Definitely something to strive for!

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