Saturday, February 10, 2018

An update (all good), some reflection (humbling) and some "how to read your labs" stuff

Hi there everybody! I'm sorry that I've been off the face of the earth here for some time. I think you can chalk it up to a lack of interesting news to report. I continue -- as far as I know -- in stringent complete remission including a resolved MRI, which is as good as it gets. I am scheduled to return to Mt. Sinai in May to undergo standard-issue follow-up testing. My local oncologist is retiring in April, so I will need to find a new person here to follow me more closely. I do have concerns that Dr. Barlogie may retire in the next few years and I have to consider carefully where to go for follow-up. That will be the subject of a future post, perhaps, as part of an overall reflection on the fate of Total Therapy in a post Bart world. :)

So that's the news on me.

I'm humbled because in January of this year, not one but two of my dearest friends were diagnosed out of nowhere with dire conditions. Both otherwise healthy, both relatively young (52, 53), both watch what they eat, neither smokes, both are fit. One of them had a headache out of nowhere that wouldn't go away and three days later learned it is a stage 4 glioblastoma multiforme (terminal brain cancer); the other who was literally helping me with the first friend two weeks ago lost feeling in her left arm and went for a PET and they found she has stage 4 fully metastasized lung cancer which has involved almost every body in her body, her kidney, her liver, and her brain (that was the losing feeling part). She appears to be VERY fortunate that she falls into a category of 4-7% of patients with small cell lung cancer that have a particular type of genetic mutation that responds to a just-approved FDA drug. It will at least buy her time...for a moment there it looked like she might have just a matter of a few weeks.

The message here, for Myeloma sufferers, is that as horrible as our condition is, it is not a death sentence. It is a challenge, and some of us will be unfortunate and have adverse characteristics to our disease, but most will be able to manage the disease for several years even with conservative treatment that isn't pursue with cure in mind, and with the pace of progress, in several years there will likely be more cures. It's a terrible condition, to be sure...but it's not stage 4 brain cancer and it's not stage 4 metastasized lung cancer.

So 1. as bad off as we have it, it could be worse, and 2. hug your loved ones. Life is precious and every day is a gift.

Here endeth the dime-store philosophy.

I have been chatting with a number of newly diagnosed patients recently, and just this morning a friend pinged me out of the blue since he just learned that a close friend of his had been diagnosed. That person (as we all do / did) has a steep learning curve, and as I was going to explain to her how to look at her labs, I thought I might as well do it here, since it might be of service to others, and since it gives me an excuse to update my blog.

So here goes. I'm rusty, so if people out there want to correct me if I screw up, I won't be offended. :)

Our immune system contains a spectrum of protein in the blood and bone marrow, called immunoglobulins, that help identify and respond to enemies of the body (viruses, bacteria, fungi, etc.). These proteins are measured in the blood.

Myeloma is a disease that occurs when one cell in this spectrum of proteins malfunctions, and begins to replicate out of control, eventually crowding out the healthy purposeful parts of our immune system and indeed our blood supply. It also has the impact of destroying bone tissue, both by interfering with certain processes of normal bone regeneration and by setting up shop in the marrow and establishing tumors that eat the bone tissue.

Myeloma is many different kinds of disease, based both on what part of this spectrum of proteins contains the malfunction, which part of the individual protein has gone wrong, and then the nature of the genetic mutation that triggers the problem. The last of these is the most complex and most indicative of how well existing treatments respond to the disease. Let's break this down as best we can.

The spectrum of immunoglobulins are sorted by various names...alpha, beta, gamma, delta, etc.  So the first designation of Myeloma is according to this system. IgG, for example, indicates that the malfunctioning protein is in the gamma region of that spectrum. It's the largest piece of immunoglobulin spectrum and is the most common form of the disease. I had IgG myeloma, for one.

Next, the disease is described according to what part of the protein is corrupted. An antibody molecule can be considered to look like a Y. The trunk of the Y is called the "heavy chain" part of that molecule. Each of the little stems from the Y are the "light chains" of the molecule. One is called lambda, the other is kappa. When cels go through a normal lifecycle, they die and vanish from the blood. However cancerous cells will not go completely away -- there will be a growing residue of light chains observable in the blood (and the urine) that correspond to the nature of the cancer and what part of the molecule it effects. So the second designation of the disease is either lambda or kappa depending on what part is effective. I had IgG Lambda. Lambda is slightly more common than Kappa, but the designation has no bearing on prognosis.

Lastly, and most importantly, the disease is described through an analysis of the genetic structure of the cancerous cells. The process of analyzing this is called cytogenetics and it is incredibly complex, and I will leave it for another post. But the real determinant of how aggressive or treatment-resistant a person's Myeloma might be is found in the genetic code of the cancerous cells.

Okay, so how does a newly diagnosed patient recognize what's going on in bloodwork and where the Myeloma can be tracked, as well as its impact on the body?

The primer for that...will be in the next post, probably this evening. :)

5 comments:

  1. Nick, I am going to make an appointment with Dr. Barlogie (or Dr Anderson in Boston.) I've had Mgus for a number of years but things might be progressing. Do you think Dr. Barlogie is the best? Have you found someone else if he retires? Thanks a lot.

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  2. Nick, great to hear you are doing well! I check back often for updates. I would be very interested in talking to you RE: Dr. Barlogie. My local Onc is leaving the area and it also got me thinking about needing to consider my post-Bart care as well.

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  3. Nick, great to find your posting. Have not checked for a few months. My beloved specialist also retired as did my local oncologist. I would be very interested to hear what research and choices you have made; especially since we are both in SoCal and went out of state for treatment. You to Bariloge and me to Tricot.

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  4. Nick, wonderful article & very nicely explained. A member of our family is recently diagnosed with kappa type myeloma & is receiving treatment under Dr. Morgan at UAMS. Hope he also goes into remission. Please keep enriching our knowledge.

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