Mohr's Myeloma Musings: Information Overload
A recent event gave me food for thought.
I started writing this column exactly one year from the date I was admitted to undergo an autologous stem cell transplant. Coincidentally, my latest three-month check-up occurred on that very same day. I have not been one who believes that a new life begins with a transplant, replete with the celebration of new birthdays, so I have not made a big deal of this one-year anniversary.
However, the fact that it often takes up to a year (or longer) to determine a transplant's level of success did heighten my interest in seeing the test results from my latest check-up.
I can access and review my blood test results online through a portal of my cancer center. Those tests include 51 different pieces of data. Of particular concern to me recently was the fact that, in my March test results, the CBC Differential Platelet Test had seven items flagged as being too high or too low. In addition, all three of the free light chain test results were showing a steady increase.
To better understand what these flags meant, I dutifully researched terms such as “RBC distribution," "monocytes," "eosinophils," "lymphs," "EOS absolute," "platelet count," and "mean platelet volume.” In previous columns, I have indicated my lack of interest in all things science-related, so this was challenging stuff for me. It was obvious to me that I just did not have the background to comprehend how these items impacted my condition.
Probably all of us who have been diagnosed with multiple myeloma Googled the term “multiple myeloma” when we were informed of our diagnosis.
I did so for the first time since being diagnosed while writing this column. I currently limit my online reading about multiple myeloma to sites listed on The Beacon. I will continue to do so because what I found while randomly perusing different sites for over an hour is that many sites are anecdotal in nature, outdated, and overly subjective – bordering on demagoguery to push an agenda. We need to be mindful that not everything on the Internet is valid, accurate information.
After going through all of this, I realized that the amount of information that is made available through these tests and the Internet is overwhelming to me.
I strongly believe that those of us afflicted with this disease need to take ownership of our individual treatment regimens and that such ownership is only possible through knowledge of the disease and our individual condition.
Having said that, I can’t help but wonder if instant access to all of this data, as well as the acquisition of information available on the Internet, is beneficial, or if in many cases it causes undue alarm.
At my latest check-up, I expressed my concerns about my previous test results to my doctor. He agreed that there is a tremendous amount of information provided to patients. He hinted that often more is provided than is actually needed for a layman such as myself to comprehend or be concerned with. He wrapped up our conversation saying that he would share good news with me, but that he would also share the bad news when needed. He added that I need not be consumed with interpreting the details of each of the 51 pieces of data provided to me.
Those were welcome words to me.
Fortunately, my June test results showed that the number of items flagged as too high or too low dropped to just four. In addition, the steady increase in the free light chain numbers had actually changed course and dropped.
However, what pleased me more than anything about these test results was the fact that the Monoclonal Protein Immuno Test showed for the fourth consecutive test since my transplant that there was no monoclonal protein (M-spike) present.
The popular saying of “not being able to see the forest for the trees” comes to mind and perfectly describes my mindset since making a New Year’s Resolution to become more knowledgeable about multiple myeloma. I had become so focused on details (which I didn’t understand) that I lost sight of the overall situation. My overall situation is good, and as Pat Killingsworth so artfully stated in his latest column, I had forgotten to be joyful.
This expression can also be reversed – a person can lose sight of important details by being too engrossed in the whole. I’ll trust that my doctor will let me know when it is time to worry about the details.
Until then, I will concern myself with the two tests that I understand and that I think most succinctly describe my condition; namely, the Monoclonal Protein Immuno, Serum Test and the Immunoglobulin Free Light Chain Test.
Using another idiomatic expression, RBC distribution, monocytes, eosinophils, lymphs, EOS absolute, platelet count, and mean platelet volume in my world have now become the “small stuff.”
At the risk of appearing to bury my head in the sand, as I begin the second year of life after my autologous stem cell transplant, I’m not going to sweat the small stuff!
Steve Mohr is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Steve,
I too, was overwhelmed when looking at my test results. You can drive yourself crazy. I ended up depending on my doctor to tell me if everything was good or bad. I'm now coming up on my 5 year auto transplant anniversary and I am happy to say my numbers are still good. (so the doc says) My transplant doctor released me back to my local oncologist last year and I continue to have blood work done every 3 months and get that wonderful zometa infusion. The best part is that I am not on maintenance. It was a good choice for me. In the mean time, I take one day at a time and don't stress the small stuff!! Keep the faith!
Steve,
All good points, since you are now taking revilimd, you may see some of the numbers jump around, especially when colds hit and you take medication for it.
Steve,
Interesting article, as are most of yours. Without getting into politics, I am amazed it was written by an educator. Just as I was amazed Tom Brokaw's book was written by a journalist.
While it is true that readers must determine the accuracy of the online articles they choose to read, that at times the available information is overwhelming to some or all, and that sometimes it causes undue alarm, I would never censor information.
While some may struggle with science, I struggle with language and the arts more than I'd like to admit. Watching Jeapordy makes me feel inferior. We can't be intimidated by the unknown. I'm reminded from Animal House: "Knowledge is Good"
I'm sure neither of us would want to censor information, but I wouldn't want the government determining what is good for us (not anymore than they already do). I seldom give up control in my life, but my myeloma forces me to turn over the reigns to my doctor. Like you, I trust my doctor to tell me when its time to worry, but I think I'll be concerned well before we have that conversation.
With freedom come risks.
I wish you the best in dealing with this complicated disease we both share.
Tom
Patricia - Overwhelmed is the term that best describes how I felt also. I have always had a great deal of trust in my doctor and my nurse practitioner, who were repeatedly telling me that things were going very well. For some inexplicable reason, I obsessed over those items that were flagged, even though I knew that the key test results were the Monoclonal Protein Immuno, Serum Test and the Immunoglobulin Free Light Chain Test. I hope to one day be off maintenance therapy also, even though my current side effects are minimal.
Jack - Thanks for the heads up! I had had a bout with pneumonia and two bronchial infections within six months after my ASCT, but that was before I began maintenance therapy.
Steve,
This is a very good column and very true. We can have information overload in so many ways. I like to keep up with all the numbers in order to see trends. They help me when I have other doctors who worry because I am anemic. After following my trends, I tell them that is my new normal and not to worry much.
This month I had my PET scan, and my doctor gave me the good news that I am in complete remission still three years after my transplant. I trust them to give me the information I need and, for the rest, I will check it myself and then go on. Perhaps this is easier for me because I am a chemist and worked in research. We had to look at too much data to determine the trends and pick out what was important.
I wish you continued remission for the future.
Tom - I appreciate your comments. I would be interested in knowing why you find my column to be amazing seeing that I am an educator. Perhaps it is because an impression might be given that I don't believe "Knowledge is Good". If such is the case, nothing could be further from the truth. The main point I am trying to make, which my medical team has reinforced, is that some information / knowledge is more important than others to determine our current condition, which impacts our state of mind. We are of like minds in regards to not advocating censorship and the need determine the accuracy of information on the Internet.
Steve
Great article. I am a professional Chemical Engineer and I was amazed by the amount of information about MM and treatments available on the net. However I believe that an overflow of information that I can look at and evaluate is better than "pre-digested" information by someone unknown to me. My main source of MM information comes from the articles and real life experiences posted on the Myeloma Beacon.
However I have found significant reliable information on the internet that has helped me make treatment and alternative treatment options. For example the % of patients developing ONJ from pamidronate. I ceased treatment after 5 months when I discovered the incident rate to be 5-15 percent get ONJ, not some "extremely small" number as indicated by the medical team. The recent article on the Beacon highlighted this, but I found the information more than 4 years ago along with other ways to strengthen bone and slow their destruction through supplement use.
Learning to evaluate information is a skill we all need, since our lives depend on it. More information is the better side of the equation. Remember the goal of education is to learn how to learn, as we will need this skill throughout our whole life. We need critical thinking when we read anything on the net, or get information from our medical team.
Steve, I found your essay, as always, thought provoking. I liked what you said about the Myeloma Beacon being a place where one can get, most of the time, objective information which is not tainted with personal agendas "bordering on demagoguery." I, too, place high value on this.
I have a question for you. I gather that you may have obtained high values on your eosinophil counts in your last test results (absolute and percentage.) I recently went back and looked at the complete record of my eosinophil counts since August 2014 when I started induction treatment. At that time everything was normal. However, by mid- October 2014, the eosinophils sky-rocketed and have remained high up to recently. When the Hopkins lab does the testing, my eosinophils are high, but not as high as before. When Lab Corps does the testing, the counts are normal. This is an issue that I myself need to resolve at this end. I only mention it as a curiosity.
My high eosinophils seem to correspond to the onset of a chronic cough about which I have previously written in the forum. My ENT has recently come to the conclusion that it is my myeloma meds that are the culprit after all. He is weaning me off the stomach acid meds I was on for the last seven weeks without any noticeable improvement, proving that I do not suffer from reflux. Fortunately, I will soon be off Revlimid and dexamethasone and we will see if any good comes of that.
Finally, to my question: what, if anything, have you learned about the cause of your higher than normal eosinophil counts (if I am correct in thinking that that was indicated on your recent testing results)? Have you discussed them with your treating physicians? Mine do not seem to pay any heed to them even though they are aware of the chronic cough that plagues me. I have tried to research on the internet and have found that they do play an important role in allergic reactions. I will be seeing an allergy/asthma specialist soon, will raise my questions with him, but am eager to learn from you if you have any particular knowledge that you can share. Perhaps I should have raised this as a topic in the forum.
I enjoy your essays; always look forward to them. You are fortunate in having great doctors in whom you have great confidence. I wish you the very best.
Masha - I looked at my previous test results (I went back one year) and found that the eosinophil numbers have only been flagged in the last two tests. If, as you suggest, they play an important role in allergic reactions, that might explain things for me as I have had an allergic reaction in varying degrees to Revlimid (and other meds.)since I started maintenance therapy.
On the other hand, my monocytes numbers have been consistently high during the last year.
I did not discuss the eosinophil numbers or any other numbers with my doctors at my last check up but will do so in my next check up in September.
You are correct that I have great doctors and medical team and can't express how comforting and blessed I feel in having that.
Eric - I agree with everything you say. As a formal classroom teacher, I always cautioned our students to be very discerning in using Internet material which I think is good advice to keep in mind. That is not to say it should be totally discounted, as your experience testifies to.
My experience is a little different, based on my life experiences. And it has helped me sort through the jetsam and flotsam of MM info (and everything else) on the web.
As a journalist - especially early career as a General Assignment reporter - on a daily basis I wrote stories on topics that at 10 am I knew zero about: sanitation contracts, shareholder meetings at companies, fringe political candidates, medical breakthroughs, European border shifts, brown tide, paroled felons from crimes committed before I was born, etc. But at 6 pm I was a friggin' expert and wrote pithy, informative and generally accurate stories.
OK I am mildly exaggerating - I knew a good amount about a lot of things already, as anyone with a degree and life experience does. But hardly enough to teach a class, or write a story that was not an embarrassment to me or my employer.
How? Well partly it was pre-web, but the paper's library had a voluminous clip file. I'd simply work all morning to identify a trusted expert, and go to them for guidance.
Same as with my MM.
My doctor is fantastic. I am in two research studies and folks there have been beyond helpful. Some childhood friends are doctors who have made fabulous referrals regarding information.
They have helped me identify what knowledge and numbers are key, and what is the small stuff.
I no longer sweat.
I still browse everything as you never know what you'll find, and sometimes I'll see something worth bringing up with the doctors. But not often.
Thank you, Steve, for your good article. I am trying, as you, to get the needed information but using good sense in looking at good sites (like the Beacon), talking with my doctor about questions, etc. Seems to me as if part of being in charge of ourselves is an educational process and just takes time. Thank goodness for getting the gift of time from a good result from the transplant!
Sylvia
Steve, thanks again for another very insightful article. Unlike you, I am very into numbers and the test results but I am going to take a lesson from you and "not sweat the small stuff." Since my husband is totally consumed with his chemotherapy, accommodating the side effects, and trying to stay as healthy as possible under the circumstances, it falls to me to watch the test results, read the Beacon and research treatments for multiple myeloma. Like you, I have confined my reading to the Beacon as well as the actual journal articles from the meetings of the American Society of Hematology and the European Hematology Association.
My husband is getting ready for his autologous stem cell transplant. We have a consult with one of the specialists at MD Anderson on July 15 and will know more at that time. We have wrestled with the decision to move forward with this procedure, but reading your article and others that are similar, we can now see that it is time. Congratulations on your one year anniversary - that gives me hope.
I will look forward to hearing more from you in the future and will look forward to seeing your numbers! I appreciate your willingness to share your experiences with the Beacon community.
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