Mohr’s Myeloma Musings: Waiting Games
Patience is not one of my virtues.
I was reminded of this as I began my Christmas shopping five days earlier than normal. I waited 20 minutes to get a smoothie at our local fast food restaurant. It is because of waits like these and my lack of patience that I normally do my Christmas shopping on Christmas Eve day.
There is little traffic, the stores are not crowded, the lines at the gift wrapping kiosks are not long, and one doesn’t have to wait for 30 minutes to get a table to eat. To top it off, there are great sales. Never mind that things are picked over and inventories are low. Those are minor issues since my Christmas shopping has been limited for the most part to getting stocking stuffer-type items. I learned long ago that my wife and kids enjoy gift cards more than my creative attempts to purchase clothes and jewelry for them.
If there is one thing that those of us with multiple myeloma have in common, it is the fact that we spend a great deal of our time waiting. While some have been quick to point out how having multiple myeloma has made them a better person, I’m not sure it applies to me. However, I do have to acknowledge that in many ways I am a more patient individual than I ever have been, which may be due in part to the fact that living with multiple myeloma involves waiting. Some of these waits are rather trivial, some are short, some are longer, and some are excruciating in nature.
One wait that no longer bothers me is waiting to see my doctor, whether it be my primary care physician or my oncologist at my cancer center. While a wait of 15 minutes in the past would drive me crazy, regardless of how late I may get in to see my doctors, I accept it as the cost of getting sound medical care and personal attention. I enjoy the fact that both my primary care doctor and oncologist take the time to treat me as more than just a patient. They engage me in discussions of local sports (my primary care doctor) and banter good naturedly with me about a whole host of issues relating to education (my oncologist).
One of the more difficult waits is for the three-month check-up test results to be posted. While many of the results are available by the time I see my oncologist on the day of the appointment, the results I am most eager to see – the serum protein electrophoresis (SPEP) and the serum immunofixation electropheresis (IFE) tests – usually aren’t available until several days later.
I have always told my administrative team at work that I want to hear good news fast, but bad news faster. Because the last tests to be released can be the bearer of bad news, the wait for those test results is stressful.
In addition to the usual battery of blood tests, my doctor ordered a bone survey during my three-month check up two weeks ago because I was experiencing bone pain in my arms, legs, and hip. I was fully expecting to hear that new lesions had developed or that old lesions had grown. I was pleasantly surprised to find that things were pretty much the same as what they had been almost 18 months ago.
A less pleasant surprise was the fact that in those test areas that that I worry about the most, my condition has changed. A “faint to moderate zone of restriction accompanied by polyclonal gamma” and “0.007 g/dL M-spike” on the SPEP test, and “minute amount of IgG kappa monoclonal protein is present” on the IFE test, were the words that jumped off the screen as I read these test results.
Did these results indicate that the worst wait of all – the wait for the inevitable relapse to occur – was now over? My doctor assured me it was not anything to be concerned about because the changes are so small. Because he is not worried, I won’t be. Having said that, the wait for my next test results in March will no doubt be more stressful than normal.
I recently had a great deal of dental work done. To control the swelling of my gums, my dentist prescribed dexamethasone (Decadron), the same steroid that, along with Revlimid (lenalidomide), was a part of my induction treatment. Even though the dosage was half of what I had been prescribed during my induction therapy, I wondered if I would go through the frustrating wait of trying to get to sleep that haunted me in in my earlier use of dexamethasone. The dex performed as expected. I waited a full 37 hours before falling asleep after taking the first dose.
Without question, the worst waiting experience I have had with multiple myeloma was waiting to be discharged from the hospital following my autologous stem cell transplant. As my numbers neared the target that had been set for my release, the hours passed so agonizingly slow that hours seemed like days.
Unlike others who have had painful bone marrow biopsy experiences, I have been very fortunate, as the pain I have experienced with this procedure has been minor. But there is that nervous wait for that brief moment of pain, fortunately only a few seconds, that occurs when the specimen is withdrawn from your bone marrow.
A wait I am almost embarrassed to share is waiting for blood draws to end. The sight of the blood of others does not bother me, but the sight of my own blood causes me to become light headed and nauseous – not a good condition to have with the number of blood draws that make up the life of a multiple myeloma patient. Fortunately, I can overcome this by averting my eyes from the whole procedure until I hear the nurse say she is done.
The ultimate and most anticipated wait for all of those affected by multiple myeloma revolves around that day when a cure for multiple myeloma is announced. While that wait did not come to an end in 2015, many new, exciting developments did occur that give us hope that maybe the wait for more effective, less toxic treatments – and an eventual cure – may not be as long as we fear.
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 am not big on waiting either and I like to have my test results BEFORE I see the doctor on my quarterly visits. So since the SPEP and sFLC tests take some time, I have made arrangements to have the blood drawn for the test a good week ahead of the scheduled appointment. That way, the test results are back in time for the appointment. I normally double up my appointment with an infusion as well and that is all done at the same place. So as I am getting my blood drawn for the infusion I have the staff print out the results of the week earlier blood tests. I can then review them before I see my oncologist and have all my questions ready. You might try that.
Ron
Great article Steve. Everything you wrote about is exactly how I am sure we all feel about that dreaded 3 month blood draw. Just had my first 3 month blood draw since my stem cell transplant the end of May. The local tests were right on target in the normal range, but now the anticipated wait for the myeloma blood test from Mayo Clinic. Hopefully I can stay in remission for at least a year or more before going through everything again. Again, Steve, thanks for the great article that certainly hits home with all of us. Hope you have a wonderful myeloma-free 2016.
Steve, I wholly agree with Lynne when she suggests that we all share in your impatience for test results (and really all the other things you note). I am just wondering whether your doctors ever explained why it takes so much longer to obtain the SPEP and IFE results. I ask because I find that I can be far more patient if I am given an explanation for why something is occurring. If there is a sensible reason, I usually can wait without fretting.
For the last few months (my testing is monthly), I, too, have been receiving my IFE later than anticipated and it has meant that my oncologist has not had the benefit of the result during our monthly consultation. My blood draws are performed at a Johns Hopkins hospital in Washington, D.C. and then sent to the Baltimore lab for SPEP and IFE analysis. The first time there was an unusual delay (3 weeks) in obtaining the IFE, I just happened to have a scheduled appointment with my specialist in Baltimore. She, too, thought that it was odd and checked with the lab only to learn that they had never received the order. Fortunately, I was told, they had a sample of my blood in the refrigerator and they could perform the test. I received the results within two days! Of course, I checked with hospital staff back in D.C. and was assured and reassured that the order had been properly sent. What is interesting to me is that the IFE could be performed in two days' time.
Since that last episode, my IFE results regularly come in later than all other test results, always a few days after my consultation with my oncologist. (I usually have the blood draws ten days before my doctor's appointment.) It annoys me to no end. Still, it strikes me that there may exist a legitimate scientific rationale for the delay. As indicated above, it appears that the test actually can be performed in two days' time. So, back to my original query: have you any idea why this delay? Until your essay, I thought that I was experiencing something unique. I know that in the grand scheme of myeloma, this matter is trivial, but, still, I am curious. Masha
Waiting + Watching = Sword of Damocles
However, one upside of waiting at The James is that there's a Cheryl's Cookie Store right there in the hospital itself!
Just saying ...
Here in Wisconsin the blood tests are scheduled 1 hour before the appointment with the oncologist, then he has the test results when he sees me. The myeloma test results are sent to the Mayo Clinic in Minnesota and those results normally take a week. My health care provider has an online informational website called My Chart; on there, I can access upcoming or past appointments, statements, and bills and any test results. They automatically send me an email when the test results are in so I will see the results on My Chart before the doctor even calls with the results. On this chart, it lists the normal range of the test and your current range. That way you can see right away if everything is normal. It is really a great feature.
I hadn't quite realized all the different ways myeloma makes a person wait until you explored it so thoroughly in your column, Steve. Thanks.
I guess another type of waiting the disease causes is the waiting that people with MGUS, smouldering myeloma, and solitary plasmacytomas have to do, as each blood test they have may show that their disease is progressing. It's a little different than the sort of waiting you focus on in your column, however, since it's waiting you hope will never end.
Cheers!
Ron - As usual, great advice. I will look into this with my future appointments. I am only an hour away from my cancer center and with being retired now, it will not be any problem with my schedule.
Lynne - At the James Cancer Center, things are done similarly as in your experience, as the blood draw is done prior to the appointment with my doctor. Most of the time, all of the the results are available by the time the doctor sees me, except for the myeloma markers. They usually are a available within 4-5 days. They also have My Chart and I get an email notice when they are posted. It is a really great feature.
Masha - I have never been told why those test results come later. I just assumed that they are far more complicated and detailed and thus take more time. I will certainly ask that question at my next check up in March.
Steve - You are so right about Cheryl's Cookie Store! It is a routine stop for me on every trip to The James.
Ian - Smoldering, MGUS, solitary plasmacytoma ... "watch and wait" all fall into the same category - a wait, like you say, is waiting that we hope will never end.
Steve
Seems like the M protein number is a "wait" for everyone! One can get a clue into what the number is doing by monitoring the total protein number that comes out with all your other blood test numbers. I started graphing this quantity, since the M protein analysis was never available at the oncologist appointment time, one hour after the blood was drawn. However, every other number is there, and for those of us with a little math skill, you can generate a very good educated guess at the number by graphing the total protein number vs M protein number.
This simple plot will tell you if all looks stable or not. Helps satisfy the need to know, until the actual data arrives a few days later.
If you really want to get technical, you can enlist the help of a math-inclined friend to create an equation that uses other blood parameters, which are instantly available, to predict the M protein more precisely.
Have fun, since you have to wait for the actual number anyway!
Thanks for the nice column, Steve! I smiled at your description of your shopping trip on December 24 for stocking stuffer-type gifts. We were in a 'big box' stationary store on the 24th to pick up some gold and silver felt pens. One of our daughters was making a craft that needed those and Dilip and I were out anyways, so we offered to pick them up. There was absolutely no one in that store and I could have done all of my shopping there! Maybe next year I will do that too!
When you were worried about aches and pains and had testing done, which fortunately turned out to be negative for new lesions, I remembered that I used to have that problem, but not so much anymore. I think that the healing processes of the body help with that over time.
Also, as Eric mentioned, you can check the 'total protein' on your lab report to get an estimate of how things are going in the blood. If that number is normal or stable, chances are not a lot of new 'M' protein is being produced. This is just an estimate though.
I can't get my lab testing done more than a day ahead of getting the Revlimid renewed, since the medical people want to know that my WBC, especially neutrophils, are strong enough to handle that drug. But a day ahead is usually enough time to get the serum free light chain testing done, which we can look at during the doctor's appointment, and then can get the monoclonal two days after the appointment. So within that week I know how everything is. It is a bit time consuming, but I also live close by to the medical lab, so really don't mind going to the cancer clinic two days in a row. I get the monoclonal results over the phone, from a nurse.
Happy New Year's. I enjoy reading your's and the other columnists' work, and reading the Forum also.
Steve, thanks for another great column! Your feelings resonate with us all, I suspect. Not knowing what you need to know and fearing what it could be are the all too familiar paths that we negotiate as we find ways to better cope and live well with myeloma. The good news is that maybe we get better at it as we go ... I'm hoping, anyway.
Take care. Wishing you and your family a Happy New Year!
Nancy - Thank you for the advice. The amount of M protein detected in my last test was a very small amount and probably is why my doctor isn't concerned at this point. Needless to say, I hope this isn't a trend. Like you, I enjoy reading other writers' columns as I learn so much from them. Hope you have a great 2016!
Tabitha - Thank you for the kind comments. I don't think that the waiting for those myeloma numbers has gotten easier for me. I hope you and your husband also have a Happy 2016.
So true. I have been spoiled. Do blood work in morning, have most results online at Mayo before doctor appointment in the afternoon. Since my FLC are my primary indicator, that test results don't take that long. In between Mayo visits my local lab does the draw and overnights the tubes to Mayo, usually the results are online by noon the next day. That is pretty impressive to me. But that doesn't solve the week or two ahead knowing D-day is coming.
That said, in two weeks I have my year check up from my second transplant (first one in 2008). Have opted out of any maintenance treatment after both transplants (I don't handle steroids well at all). If fact, I did no treatment between transplants. Waited until the markers were jumping and went straight to second transplant. So each check up is a pretty big deal, decides if I stay off treatment or go back on. Looking for good results, since my last tests in September were very good. Of course, know I will be getting several doses of immunizations at this appointment. Isn't it scary how this is all 'normal' to us?
Oh, the many roads one can take with multiple myeloma. I do know there are so many more options than even nine years ago when I was diagnosed.
I have forgotten what it is like to live without cancer. Yes, an innocence long gone.
Nancy,
I'd never heard of checking the total protein for clues as to whether the myeloma is active. Mine is always in the normal, but I do have an M-spike that Velcade is bringing down. Since your husband is a doctor, is that where you got the info? Or your oncologist? Just curious, since this would be a 'good' sign for me.
Hi Steve - Just read your article. I have just been diagnosed with multiple myeloma and have just finished 3 cycles of chemo (Velcade, cyclophosphamide, and dexamethasone - VCD), and now I'm waiting for 2 weeks to commence a stem cell transplant. I''m in Australia, so things might be done a little differently here from a medical point of view. I really don't know. But what I can confirm is the waiting just drives me mad. I am so lucky to have great doctors here, but it's the waiting for treatment which makes me like a caged lion wanting to get things over and done with ASAP. I really don't know what to expect with the transplant, but I am confident that this is the best alternative for me and the best way I can eject my unwanted visitor. Great article. Regards, Peter.
Christina - Yes, this sort of 'guesstimate' of total protein is from my husband, who is a family physician, not my oncologist! The oncology nurses also help us to interpret results at appointments. But you would also have to watch out for any other abnormal lab results, such as the kidney tests (creatinine). There are other reasons that there could be excess protein in the blood, apart from having monoclonal proteins. I get all of the myeloma blood tests done, so looking at the total protein really is just an indication to us, while waiting for the other lab results to come in. Hope that helps.
Steve,
Another great article. Since I went the route of a clinical trial, I have blood work monthly, and my myeloma results are there from the previous month, which makes the visit with the doctor a little quicker.
As far as your latest results, if the doctor isn't concerned at this point, stay positive. I totally understand. If one of my markers changes, I raise the flag immediately, and on my chart asking questions.
Have a great 2016 – enjoy retirement!
Thanks, Steve, for another great column. As others have mentioned, we share in your impatience for test results. Recently we had to wait more than a week for my husband's PET/CT results and were terribly anxious for those results because of some shoulder pain that my husband was experiencing. Fortunately, he had no new lesions, just some rheumatoid arthritis. Since we do most of his tests at MD Anderson in Houston, we usually get the blood results the same morning and the UPEP, SPEP, and IFE the following day.
So sorry to hear of your experience with the dexamethasone. That is a long time to be awake. Hoping you stay healthy in 2016 and we will look forward to your next column.
JC - I have the utmost respect for anyone who has the courage to have a second ASCT. Your statement of an "innocence long gone" is so descriptive of our lives. Thanks for sharing your thoughts and experiences.
Peter B - It is great to hear from someone Down Under. I lived in Adelaide for 5 years (1968-73), attending boarding school there as my parents were missionaries in New Guinea. I loved it there and now that I am retired (as of December 31, 2015), I am seriously contemplating a trip there. I had an ASCT in June of 2014. The first 8 days of my 16 day hospitalization were TOUGH, but things got better quickly after that and my condition has been good since then, suffering only from the typical side effects of Revlimid. My advice would be to take things slowly once released from the hospital. I rushed back to work too soon. Good luck!
Jack - I trust my doctor completely, so if he isn't concerned, I'm not. I refuse to allow a slight increase in my numbers to ruin the start of my retirement and what has generally been a positive attitude I've tried to maintain since diagnosis.
Awww ... the waiting game. A timely article, for me.
I was diagnosed in 2013 with amyloidosis and smoldering multiple myeloma. I'm in remission after chemo and an SCT, so I go in every three months to see what my light chains are doing and to do a 24-hour urine. I still have proteinuria ...in fact, it is getting worse.
So in December, I was scheduled to see the doc on the 15th, with labs drawn on the 8th. But I came in early for the blood draw and to bring in my lovely jug o'pee (I can say that here; I know I'm on good company) because I was going to run a marathon (26.2 miles) on the 6th, and long runs can skew the protein results, I'm told.
(I know I am blessed to be able to do this. I don't complain very much!)
So, on the 15th, I hear the bad news. They never ran my light chains!
So, I went to get stuck again. No big deal, but it meant ... waiting!
I had had my heart set on getting that result!
Doc said to call in 3 days, but he'd be on vacation, someone would tell me.
I waited 6, to give them the whole weekend to be safe and called on Monday.
They couldn't find them.
Said they would call the lab.
I waited all day.
No call.
So I called midday Tuesday.
The receptionist said she couldn't give me exact numbers, but they were normal. Yay!
So the doc covering for mine never knew about that call. Because she called me too. Late on Wednesday, more than 24 hours after I knew they had the results and possibly two days after, since they may have very well been there Monday afternoon.
I'm debating whether to say something or not.
I'm sure the doc covering for mine was busy. But this was good news. A quick call. To ease the mind of a patient. 20 seconds. Tops.
And I was worried, having told her on Monday, they were already late.
Does she get it? How I feel like my future is in those results? I don't know.
Sure, I feel fine. No reason to think it's back. But I never felt bad in the beginning either. I have no way to gauge if this is coming back. Only the test.
I'm just a little disappointed.
Patty B - It sounds as if your husband and I had a similar experience with our last check up. I was really concerned about the aches and pains I was experiencing and pleasantly surprised that the bone survey showed nothing. I wonder if the pain I experience is more-muscle related than bone pain and caused by Revlimid. I hope that my comments on the wait for test results aren't interpreted by some as a criticism of my cancer center or any other facility. I feel blessed to be able to be treated there, and the care has been nothing short of outstanding. Rather, I hope the comments are seen for what they are, just a fact of life when you live with multiple myeloma.
Kim T - It is so impressive that you (and others) are still able to run marathons and do similar demanding activities. It inspires me to finally start a fitness regimen that I should have started long ago. Your last paragraph where you state you never felt bad in the first place is so descriptive of so many of our experiences and is why I think we worry so much about what the latest test results might reveal. Thanks for sharing your experiences.
Kim,
I am not sure if this would help, but I sign a form at my local lab which releases the labs directly to me. They mail or hand me my results if I wait for them (could ask about faxing). No delay that the doctor has to see them first. They are my labs, and I pay the bill (thru my deductible or my expensive insurance). This is a smaller rural hospital, but very up to date on patient care
My lab has an envelope ready for me to put my address on every time I get labs to use if I am not waiting for the printout. Works great. Of course, when doing labs at Mayo, I just check them online as they are completed.
Thank you so much for this article which captures so well all the waiting we do as a myeloma patient. As you can see from the number of comments, you struck a chord.
I now drive 90 miles to Grand Junction for my IgA. It is an easy drive, no mountain passes involved. The advantage is that within 3 hours I have the result. If I go to my local hospital, it is mailed to Mayo Clinic and I wait one week or more.
The oncologist at the local hospital really did not want the results from another hospital. Now after a year, we have reached an understanding.
I make the trip monthly. I arrange for shopping, since I live in a small town. Since whether I am in treatment or not depends on this test, I am happy with this arrangement.
Again, thanks for addressing the challenge of "waiting." Maureen
I am able to see my tests results, including all myeloma blood work, on the Internet through a patient portal offered by my oncologist. Would I like it sooner? Yes. The hospital where the blood work is sent also has a portal, but it takes nearly 2 weeks to get all of the results, and fuggetaboutit if it involves a holiday weekend! I did not know about the oncologist's portal until a few weeks ago, but it is a big improvement over the hospital service, and/or calling the doctor's office. (Although he is pretty good about this stuff, and will return the call or text after hours – a very reachable guy).
So, my advice is to ask your doctors if they have a portal you can use. I went last Wednesday for my blood work, and it was all back today. The light chains came back after 3 days, I was just waiting for the electrophoresis.
Thanks, Steve. After I wrote that, I wondered if it was a bit whiny. I have so much to be thankful for. But if it inspired you in any way, I'm glad I posted. So get back out there and do what you want to do! Good luck!
JC, Maureen - Most times, all of my test results, except for the monoclonal protein, immuno, serum tests, which includes the IgG, IgA, IgM, SPE Interpretation, monoclonal protein, and immunofixation, serum, are posted before I see my oncologist on the day of the appointment. It is usually only about 3 days later that they are posted and made available go me. I have never had my blood draw done at my local hospital, but I sense that it would take much longer to get any results from them.
Ellen - I receive all of my results via a patient portal (MyChart) which not only posts my test results but allows me to communicate directly with my oncologist and his medical team. They are great about responding to any inquiries I have in a very timely manner, often immediately or within hours. The portal also has a list of all of my current medications, medical history, and previous and future appointments. It is a wonderful service.
Kim T - Based on what you described, sounds to me as if you had every reason to sound a bit whiny! I appreciate you sharing your experiences as I'm sure others do too. I plan on doing what I want to do in 2016 and beyond – within reason, of course!
Hi again Steve,
I spent 2 years on a posting in Papua New Guinea from 1981 to 1983. It's a wild place. Yes, there are many of the multiple myeloma brethren down under, and we all share a common vision to listen to our specialists and maintain hope that all those fine people out there researching will find a cure and/or a method to keep our unwanted visitor (Mr MM) under complete control.
Until then, we all must stay positive and have patience ... even when we have to wait for those numerous test results.
Enjoyed your column and all the contributions. Stay safe.
Regards, Peter B
Peter B - Small world! Have a great and healthy 2016.
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