Meeting with Prof. Gertz: patient-friendly approach and causes of myeloma…

Today’s post is based mainly on what I remember from the meeting with Prof. Gertz, Mayo Clinic (see previous posts), and on my fabbbbbulous friend DB’s notes. By the way, DB, thanks for going to the meeting with me! 🙂

A patient-friendly approach. Since Prof. Gertz kindly offered to meet with patients after lunch (a yummy lunch, incidentally), many of us stayed on until mid afternoon. And many of us had brought our test results/the results of a loved one.

I remember one man in particular. He’d brought his father’s test results. Since I didn’t write down any of this (I merely translated the back and forth Italian-English-Italian with Prof. Gertz…), the main thing I remember is that the father’s Bence Jones protein level had gone up in the past 7-8 months.

After looking at the father’s test results and asking a few questions such as “how does your father feel?” “does he have any symptoms?” and “how are his bones doing?” (the son’s answers: 1. fine; 2. no; 3. we don’t have the x-ray results yet), Prof. Gertz said that the only thing that concerned him a bit was the Bence Jones increase. And of course one would need to see the x-rays. But, he added, if the x-rays are okay, then this would be a “smoldering” situation, which means the father should be monitored carefully but not treated…not right now, that is. He added that if the father were one of his patients, he’d have him redo his tests in two months. On hearing that, the son looked absolutely stunned. He told me that his father was beginning treatment in a couple of days (last Tuesday, in fact). Prof. Gertz told him that, in his opinion, that wasn’t necessary. Why start treatment and begin having symptoms, he added? The son was clearly very distressed and at a loss as to what to do…

I wonder what happened last Tuesday…did the father go ahead with treatment? I hope not, but I guess I’ll never know.

The fact that I translated most of these informal, individual encounters gave me the opportunity to observe a true Master at work. I’m referring to Prof. Gertz, of course (and I wouldn’t say this if I didn’t mean it). He looked at every single test result (in Italian, to boot!), then he asked the patient/caregiver direct questions in a very gentle, professional way. If needed, he looked at the test results again. And then he said what he thought should be done…in a very simple, humble manner…

This is exactly what I think a specialist should do. First, ask how we’re feeling, then look at all our test results, ask relevant questions based on the tests and finally say what s/he thinks we should do. It is important to look at the WHOLE picture, in other words. Not just at one test. And it’s equally important to find out how the patient FEELS. 

I like Prof. Gertz’s cautious, gentle approach, one that clearly focuses on quality of life…

Causes of myeloma. While he acknowledged that there is a familial link in a tiny percentage of cases (1-2%, as I recall), he said that all the other causal links are weak. Basically, he said, “we just don’t know.” So I’m officially giving up. And anyway, I’d rather do research and focus on a treatment regimen that will keep me stable (or better!)…

Okay, I need to go get ready now. We’re about to go off to meet up with a couple of friends. Then we’re driving to a Tuscan town called Gaiole in Chianti, near Siena. I hope to get some good photos to post on the blog. It’s such a gorgeous sunny warm day…Sooo, I hope you all have a super weekend! Ciao! 🙂

P.S. today’s photo is of a greenfinch (though it’s quite yellow, eh, so I’m not certain about that); I took it in a park just outside of Florence. 

3 Comments

  1. The older gentleman above with SMM, my situation exactly. Have tried 4 grams of Curcumin – turned my hands yellow and I got an awful cold. Have now reduced the dose to 1 gm. Also, have been offered a trial at The NIH for SMM – a total change in treatment direction. Would love to know your thoughts, Margaret.

  2. Hi Reina, your hands turned yellow almost certainly (99%, I’d bet) because there was some residual curcumin powder on the pills or capsules you handled. No cause for concern. Just wash your hands carefully afterwards.
    I also very much doubt that the curcumin had anything to do with your cold. If anything, curcumin (which has antibacterial and antiviral activity) should help.
    As for the NIH trial, is that the anti-KIR one? I don’t know anything about it, except what’s written on the Clinical Trial website. So I can really be of no help to you there, sorry! The only thing I might suggest is that you write to a couple of MM specialists, such as Prof. Gertz, whom you respect, and see what they think…
    Just a random thought…

  3. Margaret,
    I read somewhere in the volumes that I read, that in Europe, it is common for doctors to tray smoldering. The belief is to get a jump on the treatment.
    Mary Ann D’Achille-Weyer

Leave a Reply to Reina S. Weiner Cancel reply

Your email address will not be published. Required fields are marked *