Myeloma Lessons: Am I Paranoid Or Just Vigilant?
As happens with most myeloma patients, my diagnosis was delayed. There were signs of the disease that, in retrospect, should have prompted further investigation. But, because of my and my doctors’ unfamiliarity with the disease, we did not do the testing necessary for a diagnosis until there had been bone damage.
This is not unusual. The type of bone pain myeloma causes is easily confused with a host of musculoskeletal problems that are frequently treated with chiropractic or physical therapy regimens.
Once the real diagnosis comes in, many of us kick ourselves for not being more proactive in seeking proper medical care. We lament that, had we pressed the issue sooner, perhaps we could have prevented some of the damage that is now largely irreversible.
Since my first athletic overuse injury from ignoring pain, which resulted in stress fractures in my shins, I have been “body aware.” I pay attention to aches and pains, but try not to obsess about them.
This myeloma thing, though, makes me wonder if I have crossed the line to unhealthy paranoia.
I review my monthly blood test results online as soon as they are available, checking back frequently as more results come in. When I visit my myeloma doctor, I usually have questions about symptoms, available treatments, or whether certain testing should be done.
He often tells me “Don’t worry so much; go live your life and enjoy it!” To a degree, he has a point: It is important that we use the days we have in the most beneficial way possible. This can be hampered if all we think about is the disease.
Finding that balance between vigilance and paranoia can be difficult.
I remember reading a column by one of my fellow Beacon writers in which she related how, for the first time since her diagnosis, during a recent weekend she actually went an entire day or two without thinking about myeloma. I was both amazed and jealous that she was able to free herself, even for a short time, from the burden of dealing with the disease.
I haven’t had one of those days yet, and I suppose that, as long as I am on some type of treatment, it will be virtually impossible to put myeloma completely out of my mind. It’s hard to not think about why you are popping those pills.
Blissful ignorance at this stage sounds like heaven, but I am not sure that it is what I should wish for.
I am naturally the type of patient who plays an active part in my medical treatment. When I go to any doctor, regardless of the reason, I always have an objective – and usually a tentative diagnosis – prior to the visit. I have learned over the past 20 months since myeloma came into my life that it is essential for myeloma patients and their caregivers to take a similarly proactive role in the monitoring and treatment of this disease.
Myeloma is so varied, the treatment options so myriad, and the science so uncertain that only we the patients can make the final decisions about how to proceed. In order make these decisions effectively, we must do the research, keep a close eye on our symptoms, and take care that we catalog the side effects of the medications we are taking. Yes, it is important that we seek out the care of a myeloma specialist, but that doctor is just another resource – not someone who dictates to us a course that we blindly follow.
We all wish that myeloma would lend itself to a consensus course (or courses) of treatment depending on the results of testing, but that is simply not the case. There are “schools of thought”: transplant versus non-transplant; aggressive therapy versus a more sequential approach; two-drug versus three-drug combinations.
How do we choose?
The answer is by doing our homework and being vigilant. Some examples from my own personal experience illustrate this.
My myeloma specialist has a “everyone eligible should get a transplant” approach to treating myeloma. During my first visit, he laid out a course of treatment which consisted of induction therapy followed by a transplant. He even said during a later visit, when I questioned whether a transplant was appropriate, that failing to have one would be “suicide.” I guess you can say he believes strongly in his position.
Feeling the need to be sure about my choice, I sought a second opinion from a myeloma specialist who was far more reluctant to prescribe a transplant. In the end, I did a transplant, but only after thoroughly researching the question on my own.
Another example. About six months after my transplant, my M-spike started to rise. Of course, I was concerned. The next month it rose again. Now I was doubly concerned. So I started doing some research and learned that this could be a relapse (bad) or secondary MGUS (good).
After digging into more details of my results, I saw that the clone of my post-transplant M-spike was different from the clone I had at diagnosis. This pointed to the likelihood that I was experiencing secondary MGUS.
When my doctor was reviewing my results, he expressed concern about the rising M-spike. But when I mentioned the prospect that it could be secondary MGUS, he reconsidered. I am not sure when or if he would have picked up on this point if I had not raised it.
There are other examples I could give of instances in which being vigilant, doing the research, and keeping a close eye on what was going on with my body have proven to be helpful in guiding treatment decisions. I am hardly alone in taking this approach, judging from the many “patient experts” who populate the Beacon’s online forum and other websites.
This is not to criticize the doctors who are so essential to our survival. But, in fairness to them, they have hundreds of patients. I only have one. So I can afford to devote my full-time energy to that single patient.
So, to answer the question posed in the title to this column, I don’t think I am paranoid or even overly obsessed with my condition. Sure, I would love to live in denial, forget about multiple myeloma, and just live. But if I want to maximize my opportunity for a long, quality life, vigilance is critical.
In fact, it has become clear that practicing vigilance and thoroughly researching the disease before making a decision has freed me to live the best life possible. I am comforted by the fact that I have done all that I can to make the best choices, which allows me to put that part of my life in a compartment and enjoy all that life has to offer.
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Great column and I immediately thought of the quote (attributed to various sources, including Henry Kissinger): "Just because you're paranoid doesn't mean they're not after you."
Andy,
Enjoyed reading your column and I suspect most cancer patients had similar experiences with "delayed" diagnosis. Mine as a medical social worker concerned with a swollen neck lymph node expressed concerned while on medical rounds and told by an outstanding ID doctor we all get lumps. So my CLL went undiagnosed for months. But I happen to agree – vigilance versus hyper-vigilance is a good thing. Partnership is the goal for patient / doctor relationships and adding questions gleaned from research or articles to the discussion during appointments is helpful to both.
I agree denial is not acceptable, but partial denial allows us to be watchful while also enjoying life. Enjoy life!
I hear you Andrew. Vigilant, count me in. I do hope not paranoid. But it's true to say it is a small line to balance on. At this moment I am wondering about second cancers. My breast as well as my cervix are acting strange – not really like high alarm, but, still, both at the same time after 2 and a 1/2 year Revlimid? Some how, it doesn't feel good. Happy Easter to all.
Thank you Andrew!
Prior to 2012, my going to a doctor was a very rare occurrence, maybe once every other year. Excess energy has never been my strong suit, but early in 2012 my level of fatigue had become so extreme that I did go in for some tests.
Those tests didn't reveal much other than the fact that my RBC was at the low end of normal. My doctor suggested I get it checked again in 3 months. Eight months later, following excruciating low back pain and a severe nosebleed that had persisted for over 3 weeks, I went back to my doctor for those 3 month follow-up tests. Yes, even I recognized my math was really off ...
Two days later at 7:00 a.m. my doctor called me, asked where I was, and when I told him I was at work, there was a short but very poignant pause followed by a, "I can't believe you're upright. Drop whatever you're doing and get to the E.R. for a blood transfusion." Apparently my blood work was a problem.
Two months later on Christmas Eve, following an emergency rush to the E.R. and subsequent emergency admission the CCU (Critical Care Unit), I got my del(17p), IgG, kappa light chain myeloma diagnosis. On the day my doctor had called, my RBC was 2.11; HGB=7.0; HCT=20.1; WBC=3.4; platelets=69; neutrophils=0.9
Today I know that, given my symptoms and blood panel, some form of blood cancer should have been an obvious candidate, but at the time my GCP had never even heard of myeloma. Neither, of course, had I. So much has changed.
Should my disease have been caught earlier? Perhaps. But I was clearly, at least in part, complicit in that delay. The nurse practitioner who works with my oncology / hematology doctor told me that blood cancer patients generally, and myeloma patients specifically, are far more involved in the decision-making treatment process and personal research than all other forms of cancers combined.
Initially, my symptoms were so severe, and my mental faculties so impaired, that all treatment options were decided by my oncologist. Quite frankly, I'm grateful to have been spared that initial decision-making ordeal. Today, by contrast, all treatment protocols are a joint effort between myself, my wife (and our joint research), my body (several drugs I just could not tolerate), and my oncologist.
Two weeks ago, for the first time since my SCT 23 months ago, my M-spike was measurable. If I were newly diagnosed, I would barely qualify for a smoldering diagnosis. I knew that my oncologist was going to tell me it was "statistically insignificant". Mentally I knew / know that; emotionally, however ... well that was / is another story entirely.
Paranoid or vigilant indeed! Where exactly does the one end and the other begin? My concession to paranoia is that I now get blood tests monthly. But, again, is that paranoia or vigilance? If I relapse, clearly it will have been vigilance; if I don't, it will just as clearly have been paranoia.
My thoughts are with you all
Aloha
Daniel
I have to chime in and tell patients that you must be on top of your game even if you have a "myeloma specialist." At my husband's appointment a few weeks back, his doctor's "medical student" proudly reported to the doctor that my husbands IgG levels were 1490 (in range) and his kappas were only slightly elevated. I about fell out on the floor, as my husband's myeloma is IgA LAMBDA!! Thank goodness I was there, as the doctor was happily noting the numbers in my husbands chart!
April - I remember that quote!! Wish I would have thought to include it in the article.
Nancy - Great to hear from you; thanks for the support.
Christel - The prospect of second cancers concerns we as well. You should get your symptoms checked.
Daniel - Your story reminds me of my own. I got that call to go immediately to the hospital for a transfusion; Hgb=6.3 and Hct=18.2.
Blair - Your experience illustrates the point so well; engagement is critical.
Great article! Sometimes I feel like I'm not smart enough for this disease. But I agree that knowledge is power, and so much of this is out of our control. It is a struggle to not let MM be that dark shadow that you live with daily. Thanks, it's nice to know I'm not the only one dealing with these feelings.
Kathy - You are plenty smart enough; knowledge is power.
Great article by Andrew and equally great comments from Daniel. Thank you for sharing.
J
Great column, Andrew.
Since I am a practicing pharmacist, when I got my initial diagnosis, I read everything I could get my hands on about multiple myeloma. I quickly discovered that this is not just one disease and one size does not fit all like some diseases and even many cancers. One thing I did early on is have an open dialogue with my local oncologist / hematologist about me being directly involved in care decisions to make sure he was on board with that. He was and even encouraged me to do so. He said I could help him make sure we had all the bases covered. And there have been a couple times where my input was very helpful.
Once I was through my induction period, I had to make an informed decision about an ASCT or not. Again, I read all material I could find, both good and bad. My wife, daughter, and daughter-in-law are all registered nurses, so we sat down as a family and looked at all the pros and cons either way. The BIG DECISION that I then made was that I wanted a highly regarded myeloma specialist on my team. Back to my local oncologist for his input. He welcomed the idea and since he had just started his new practice coming from a teaching hospital, he knew just such a specialist personally. That was no coincidence. So off to Chicago I went.
Best decision I have made so far. Two asct's later and I am in CR. Next big decision, maintenance versus wait and see. Back to the research and articles. Family meeting again. Both my doctors put it up on a chalk board for my wife and I to see visually. Decision was to do the maintenance thereapy, Zometa, and checkup every 4 months with the myeloma specialist and monthly at my local oncologist. Here, again, best decision I have made so far.
All is good, so far. But I was involved in making those decisions and that's the way I wanted it. My doctors agreed.
Andrew you wrote that not a day went by where you didn't think of myeloma. My husband was diagnosed about 10 years ago. 5 years ago he was told it was time for a SCT. He got a different doctor for the SCT who told him that he probably had 3 - 4 years, 5 at the most. Well, it has been 5 years and he is in complete remission.
I find our life is much better if we don't obsess about the disease. I have myasthenia gravis and it does affect me, but I don't allow it to rule my life. I just do what I want to do. We don't look at the blood results and we sometimes go weeks without talking about it. He lets his oncologist tell him how he is doing every 3 months. I know that it is hard to know that you have a disease that will affect you so badly, but you could get hit by a bus tomorrow. I agree with the doctor. Get out and enjoy life. My husband could live another 10 years or even longer and we might as well enjoy it.
Hello, Andrew!
Thanks for your excellent column and insights. I like your answer to Kathy F., as I could have written what she did. I can say it's important to maintain confidence in ourselves and those who help us fight mm.
SB
Thanks for a really good column, Andrew! The factor of paranoia can persist until one is feeling that the myeloma has been brought under control, I think. However, one cannot live in a state of fear indefinitely, and what I found after a year or so was that the 'panic' factor subsided quite a lot! I still get nervous before my appointments with my oncologist, though, and I guess that helps me to focus on what I need to ask about. Because of the nature of this condition, I think that vigilance must always be present, also. Since over the last few years I have learned a lot more about myeloma, and indeed, medical science has made a lot of progress in that time too, it makes sense to try to keep up with the latest research also. Hope all goes well with you and all others posting too!
My husband was also not diagnosed with multiple myeloma until his cancerous plasma cells were at a 70% level. We could not find a doctor who could provide a diagnosis soon enough. By that time, he had 8 compression fractures of the spine and experienced very considerable pain. His doctor told him he was having muscle spasms and sent him to physical therapy and put him on muscle relaxers. It took us about 6 months to find a doctor who could tell us what was wrong and it was a very frustrating process. When my husband was finally diagnosed, he also thought about his disease 24 hours a day and our lives were never the same again. It helps me to read the columns and comments on this site from those of you also affected with multiple myeloma. It truly helps me.
Great column and great comments, thanks to you Andy. I do as you do, I find out as soon as possible about my values. I believe the only way for me to stay on top of the disease as long as possible is by being proactive. Let me also thank you for your sharing with us about your new MGUS. It helped me a lot when I recently learned that I have a new monoclonal band. I had my ASCT about the same time as you, and there is still a batch of cells for a second one. But thanks to reading your column and some articles found thru PubMed, I am now convinced that it is not yet time to start worrying about a new one – everything speaks for a secondary MGUS and not the bad first one. As for keeping the dialogue with the doctors, I also agree with what has been said here by you and others: We need to team up from both sides.
As concerns thinking about the myeloma, I recognise Kathy K´s description; there are periods when it takes up too much of one´s (my) thoughts. And that is not paranoia, it is a way of trying to find out both if there is anything more one could do about one´s disease but also what to do about life. I find this very natural as long as it leads to constructive thoughts, and that I find I have to actively "work" on, by forcing myself, when the thoughts come, to decide on a positive thing to aim for as an end to the thinking at that time. Probably someone with experience from sports psychology could teach us something here.
Again, Andy, you are not paranoid, you are great.
Kathy - You make an excellent point about the value of sharing experiences with other myeloma patients and caregivers. The Beacon is an extraordinary resource for that sharing.
Erik - Thank you so much for your kind comments. We are all here to help, and it's always gratifying to hear that others have benefited from our experiences. Stay tuned for next month's column for a harrowing tale of paranoia / vigilance.
Yes Andy, you're paranoid. Or are you? Hehe ...
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