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Pat’s Place: Tracking Myeloma Numbers

10 Comments By
Published: Jan 27, 2011 4:33 pm

Last week I shared a list of questions all multiple myeloma patients should consider.

Let's cover the first question this week: “How carefully should a patient be tracking and following their numbers?”

There is no right or wrong answer here. What is important is you begin to understand which numbers are important. This varies from patient to patient.

Lab (blood work) reports can be overwhelming! Ask your nurse or doctor to point out the important numbers.

For example, creatinine levels help monitor kidney function. Multiple myeloma patients can be at risk for reduced kidney function or failure due to high calcium levels in the blood and urine—another important number to check.

The complete blood counts (CBC) portion of the report breaks out your white and red blood cell counts, neutrophils, and platelets. These numbers are almost always important, since using thalidomide (Thalomid), Revlimid (lenalidomide), Velcade (bortezomib), or other chemotherapy drugs tends to depress these numbers to sometimes dangerously low levels.

Some patients rely on urine testing to track their myeloma. But a large majority of us use special blood tests to help doctors monitor our progress.

IgG or IgA blood protein numbers can help you and your doctor get a feel for how active your myeloma may be.  A small portion of patients are IgD, IgE, or IgM.

But a far more sensitive (and expensive) test can measure your monoclonal (M) protein levels, known as your M-spike.  M protein is produced by myeloma cells. The higher the M protein, the more myeloma cells are present somewhere in the body.  Sometimes M-spike numbers are accompanied by a written pathologist interpretation describing what he or she saw as they conducted your test.

Only specialty labs are equipped to do this—hence the high cost. Your M-spike numbers may or may not be included on the same pages as your CBCs and regular blood work. I have seen it done both ways.

I have had blood work done—and received printed or email reports—from five different hospitals or cancer centers since I was diagnosed. All used different labs, which means each report also looked different.

But with practice and a general understanding of which numbers are important, you can begin to pick the important numbers out—even if you aren't familiar with a particular format.

After reading this and speaking with your nurses and doctors, you should have a better idea about which numbers are important for you to track.

But how? I simply keep my results in a folder. I highlight the important numbers and keep the test reports in order.

But I am not too hung up on my numbers. Some patients like to do more. You can record them in a ledger or in a spreadsheet on your computer.

The International Myeloma Foundation also offers a program called Patient Manager that you can use to keep track of upcoming appointments and to chart your test results.

It’s up to you though.  Some people track, some don’t.  Some people find it helpful, and others even find it fun.  Do what works best for you.

Next week I will answer “How much does a patient need to know about various treatment options?”

Before signing off, I wanted to thank everyone who left comments or emailed me following last week's column. I want everyone to know that, despite some pain in my right hip, I am doing just fine. I will know more about my treatment options soon.

So until next week, feel good and keep smiling! Pat

If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .

Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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10 Comments »

  • Sarah Gorrell said:

    Pat: I enjoy your column, and the information and suggestions that you share.

    My husband was 72, and in pretty good health, when he was diagnosed with MM this past October. I started out trying to keep a journal, and I still often add notes - but I soon found out that I couldn't write down every single thing that was happening to him, and it wasn't always necessary.

    I created a spreadsheet, on my laptop, and always post his lab numbers, in a column by date. Because different labs have different ranges, I also have a column to show the ranges. When his numbers are low, I highlight the number in yellow and if high, they are highlighted in red.

    Because he is on so many different drugs, I also have a record of what I give him and at what time.

    I would have preferred to have chosen a different "second career"!!

  • Pat Killingsworth (author) said:

    No kidding, Sarah! This is a perfect example of the "gold standard" of what I'm suggesting... You've got me beat! Pat

  • Kansas said:

    Pat,
    Thanks for another great article - helps those that are new and even those of us not so new. I may have mentioned this before, but I put together a notebook with tabs and filed everything - labs, doctor information, meds, side affects of various chemos, and of course documention (what he ate, how he felt, BP readings,- daily). This was important to us in tracking the side affects to better inform the doctors and hopefully increase our knowledge. The notebook went to every appointment - helped remind me to ask for the lab results and compare while he was receiving treatment -- was great to see "oh, the M protein went down" or oops creatinine level is up a litte-drink more water". I would also use to take notes in the doctors office too. To us, it was taking ownership or control of the situation - where sometimes it seems there is little or no control. Glad you are doing ok - good luck with the next step. Rex and Kay

  • Kansas said:

    Sarah, I like the idea of a spreadsheet for the labs -- sounds like you keep on top of everything. Best wishes to you and hubby! Kay

  • Pat Killingsworth (author) said:

    Great advice from Kansas! Thanks, guys- Pat

  • Stan said:

    Hi Pat,
    Thank you for another well written article. I'd like to add a suggestion that both of my oncologists like. I have the lab print out a graph of my Mspike and then I add notations onto the graph. For instance, I have a VDPACE notation with an arrow pointing at the date. Immediately after VDPACE, my graph shows a sharp down trend. 3 months later I note DPACE (with no Velcade) and the graph remains flat. So when we're talking to the doctors, we can all look, point and discuss what is/isn't working in a visual way. I find it easier for everyone in the room to follow the discussion much more easily this way. And my oncologist saw some results that I don't think he would have seen if he was thumbing through his pages and pages of notes. It "distills" the story into a one or two page, easy to understand picture.
    Sorry to hear of your relapse Pat. Take care, Stan

  • Pat Killingsworth (author) said:

    Another great suggestion, Stan! Talk about detail... Anything that helps you and your docs keep your myeloma down! Pat

  • Sarah Gorrell said:

    Kansas: I also have the notebook, with the tabs......where, like you, I file the lab reports, insurance paperwork, etc. And, I also take a pad with me to jot down notes, and reminders of questions.

    Stan: Great idea! My husband's M-Spike is only tested once, or twice, per month.

    It's helpful to have these suggestions.....thanks Pat!! And, good luck.

    Sarah & Bob

  • Pat Killingsworth (author) said:

    What's helpful is all of the suggestions and feedback from our readers! Thanks for sharing- Pat

  • Brenda said:

    Bad news May 2011 after a year and a half of several chemo cocktails. The velcade, dox and steriods along with remelivid and the doctor tells Gary he has a pit bull living inside him, all he can try to do is use old school chemo to keep him alive longer. I refuse to hear this as he still has another stem cell tranpslant that he could do. The doctor has acted like he has given up..What can I do?

    Thanks