Letters From Cancerland: “There’s Mayonnaise All Over Cancerland!”
President Carter gave his “Crisis in Confidence” address to the United States in July, 1979. Two days after giving that speech, he stated that the nation had two problems, one of them being “malaise.”
“Malaise” came to be associated with that speech, although Carter never used the word in the actual address. There was an editorial cartoon I carried around for years afterwards. The panel showed a reporter coming upon Carter grilling dozens of hamburgers. When the reporter inquired why, Carter shouted “there’s mayonnaise all over the country!” and ran away with a plate of burgers while the reporter shouted after him, “that’s malaise, Mr. President!”
While the cartoon is long gone, the image of Carter shouting “there’s mayonnaise all over the country!” has stuck with me. Lately, it has been ever present as my oncologist, my personal physician, my husband, and I try to sort through the medical enigma known as my myeloma.
I am just finishing my 13th round of Revlimid (lenalidomide), 15 mg, three weeks on, two weeks off, 20 mg of dexamethasone (Decadron) on days 1, 8, and 15 of the three-week cycle. My labs, which are drawn every five weeks, are stunning. My last IgG was 1,200. 1,200! Other labs are equally good or stable or both. To quote my oncologist, “If I were looking at you merely as an oncology patient, I would be very happy.”
So why is no one, starting with me, very happy?
Because my quality of life continues to deteriorate. Yes, I have fatigue. Yes, I have peripheral neuropathy. Yes, I deal with other intermittent side effects of Revlimid. Those are not the issue.
The issue is what I have come to call malaise, which I can best describe as feeling badly hungover without being nauseated. The malaise has been with me since my diagnosis, waxing and waning over the years, but doing nothing but waxing, forcefully, in recent years. It is a daily occurrence, sometimes for an hour or two, sometimes for the whole day. The malaise comes in waves – at times the small, lapping waves of a shallow pond, and at other times the deadly, crashing whitecaps of the ocean during a winter storm. It interferes with work, with home, with my daily routine, with everything it can possibly touch upon.
It is the malaise that is stumping us all.
My oncologist had his pet theories as to what it might be. My adrenal glands might be shot. (This has been a theory of his for a long time, even though whenever we test the theory, it proves false.) Remedy? Try me on prednisone to see if that jumpstarts my system, then have a full workup with an endocrinologist. Or my neurotransmitters are all out of whack and need to be reset. Remedy? Try me on a low-dose antidepressant and see if that resets them. Or maybe the myeloma is not presenting itself through typical ways and he is missing something. He reminded me that he is a hematologist oncologist and not a myeloma specialist. Remedy? Go to the Mayo Clinic for a full workup.
I suggested I go to my personal physician and see if she and I could approach my situation with a different set of eyes. He liked that idea. So she and I talked at length, she ordered some blood work, and then we met and looked at what the additional labs showed.
As it turned out, no surprise to me, my adrenal glands are working fine. My doctor also ran a number of other blood tests to eliminate other possibilities ranging from vitamin D deficiency to lupus. All were normal. Would I consider trying a short course of Wellbutrin (bupropion) to test the neurotransmitter theory?
Wellbutrin is the most prescribed antidepressant in the United States. It does not hone in on serotonin like most antidepressants, but targets dopamine and norepinephrine. If the malaise was the result of mixed up neurotransmitters, this should jolt them.
Well, after an amazingly great first day and a pretty good second day on the Wellbutrin, the rest of the first week spiraled down slowly. The malaise knocked on the door of day 3, stood in the front hallway on day 4, reminded me it still was on the lease on day 5, and pretty much moved back in and resumed its normal course of business on day 6 and thereafter. My doctor bumped up the dosage to try to repeat the first day’s results. No dice.
The half-full glass on this experiment is that I am sleeping better than I have in a long time, so there has been some benefit. But the malaise? Still rolling, still there. I am running around shouting, “There’s mayonnaise all over Cancerland!”
What’s next?
My oncologist, my doctor, my husband, and I are all in agreement. As the malaise rolls on, we are all feeling it would be good to get a comprehensive workup in Minnesota.
There is Mayo in my future, and not just on a sandwich.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Aloha April,
Thanks for a great column. I too am fighting with the "mayonnaise" problem. I am otherwise healthy, but the malaise seems to be getting worse. I have attributed it to the Revlimid, as it seems to get worse towards the end of the cycle.
The steroid (I take a different one - methylprednisolone) seems to actually help a little, which makes sense since it acts a bit like speed in my body.
My solution is to try and ignore it (big surprise), as it doesn't seem to matter whether I sit around and rest or go forth and do something anyway. It is a real issue and I will look forward to hearing about your results, i.e. - guinea pig, from Mayo.
Thanks for the excellent thought starter!
Aloha
Tom
You came out of mayonnaise land to write a nice article.
I'm never sure how to respond to this category of article because giving advice oftentimes comes off as "I'm doing it, why can't you?" And then a few days later, I feel that malaise and wonder how honest it was to put on such a sunny outlook.
And most likely you are not wanting "advice" and you just wanted to write down your thoughts. But here goes ...
Do you notice a difference on days after you've been outdoors in the sun?
With all of these appointments we all go through, some of us (me included) figure we no longer have that extra time to do things we did before. But we instantly think "What is it about this cancer that is making me feel ...". And it could be something as simple as you are skipping that walk in the sunshine or gardening.
I'm much more easily winded now than I was when I started, but being 52 vs 46 has to play some role in that.
Also my memory is not as good as it used to be. It's easy to say it's from all the chemo, but I'm sure it's from taking Norco a few times a week.
I also went through a period where every time I got a cold I'd get these extreme headaches. Is the myeloma attacking my skull now? Turns out, when I get a cold, I don't drink coffee, and I was getting a no-caffeine headache.
I think having cancer turns us all into hypochondriacs ... Ha! (Or obnoxious advice givers! Ha!)
Take care, Stan
Tom and Stan – The thing is, I LIKE mayo on my sandwiches!
As to triggers and such, I have noted / charted / observed every possible combination of time, of day / time of year, inside versus outside, season, sunshine versus cloudy, rainy versus snow, how many hours sleep, what exercise and how much I have done, outside temps, indoors temps, AC on versus AC off, snow on the ground, how much humidity in the summer, full moon (well, maybe not that), what I am eating, what drugs I am taking / stopped taking, where I am in whatever treatment cycle, prednisone versus dexamethasone, am I running a fever, am I at home or away, am I east of the Mississippi or west, and so on. You name it, I've looked at it – I've watched for any pattern, rhyme, or reason to the malaise. None. The malaise will hit anywhere at any time under any conditions. When I looked back in older journals (looking for something else, not the malaise), I was surprised at how often it popped up as being an element of my daily life even 6-7 years ago when I was younger and had a more resilient body. (Stan, I am comparing 59 years old now to anything younger!)
Stay tuned indeed!
I love your columns, April. I always look forward to your on-point descriptions of life with myeloma. Clever and well-written, please keep them coming!
P.S. - Maybe ask for Mayo "on the side", so you don't have to take all of it! LOL
You said very well what I have experienced for the last year and a half since I was diagnosed with MM. I have tried to explain it to my oncologist and he listens and then calls it extreme exhaustion. Well, I guess it ends up that way if I don't get off my feet and rest, but it comes on like waves of unwellness. I just started chemo and have the same exact meds that you are taking and that has exasperated my condition. Maybe in time, I will gain more strength, but for right now I feel the meds are winning in beating me to a pulp.
If you get any more enlightenment on this condition, please post it. I think there may be a large percentage of MM patients that are experiencing these same symptoms.
Always enjoy your column.
Weird.
I heard someone say " just like a Mayonaise tree" on TV earlier this week.
I raised my head from my Tablet, but it was already gone. Pffft !
What a novel concept, a Mayonaise tree....and then your column comes along, April.
Conceptually, it's a wonderful thought--as I guess we have "Olive Trees...so why not"?
I sure like your columns, April.
Good luck at Mayos.
PS--I got depressed while on Dex ( during Induction w/ Velcade). I hate that crap!
I got accidentally diagnosed with a thyroid issue. Thought I had a swollen gland in my neck from myeloma, but it turned out to be my thyroid! Once I started treating (was underactive), my "chemo side effects" improved a lot (fatigue, neuropathy, etc)! It was one of those coincidental things. I hope your doctor can stumble on the cause of your malaise!
Your article explains a lot. I was wondering why, a year after ASCT, I still have no energy some days and lots others. I haven't had any chemo since asct, after a year of Velcade/dex. Can't be the mayonnaise, I don't eat any. Just gotta deal with the hand I was dealt, just not ready to cash in my chips yet.
Lys2012 reminds us that thyroid issues can also cause a number of fatigue and malaise issues. My thyroid has repeatedly passed all tests put to it, so we have scratched that as a possible cause, but it is worth checking out if you aretrying to figure out what is going on with you.
A mayonnaise tree, Rneb? What a concept! There's probably a poem in there somewhere (it's National Poetry Month here in the US), but I'm not sure I'm the one to write it. I'm trying to picture whether the fruit would be jars of mayonnaise in the style of L. Frank Baum or just pods of mayo that you would pick and use!
I am heartened by those of you recognizing what I am trying to describe. I love my oncologist, but until the issue got to be the elephant in the examining room, I think his thought was "why is it April always describes reactions and symptoms that NONE of my other myeloma patients are describing?"
As for the Mayo, I sent off the electronic appointment request yesterday.
April:
Perhaps you might find some helpful hints on this site http://www.holdthatmayo.com/about/ I think that ditching the mayo and using a top-notch brand of horseradish or wasabi mustard can cure just about any ill
Seriously, I hope you get your groove back soon.
Multibilly, you failed to point out that the very helpful website link you shared offers "hold that mayo" items for sale, including a killer apron!
Dear April, your malaise mayonnaise is exactly what I experience every day. I already quit taking my medicines for 6 weeks, but that didn't improve my daily variation in malaise mayonnaise. They told me it could be anxiety. If that is the case, it must be a hidden one, because I don't feel anxious. Even accepting my quality of life, or what is left of it, doesn't help against malaise mayonnaise. So you are definitely not a hypochondriac and not the only one with this going on.
Happy to know if they can find out what it is and what you can do against it. Take care and just ride the malaise mayonnaise waves until you and they find a solution.
This is the closest I came across. Either that, or your Baum model.
Could also be that old grumpy Viennese 'coke head', Freud, at work. Association between word associations, and concepts. Mayo, mayonnaise. Tree, Diagnostic tree. Mayo, spreading malaise. Mayonaise, hard to grasp. Etc.
Disclaimer ! I have never tried to remove tree sap with Mayonnaise, that is Dorothy's job,.. or the Tin man's,..or...
Good luck with condiments and Doctors and trees. ' oh my'!
My best.
Hi, April!
Good luck with the appointment at the Mayo Clinic. There's an answer for you out there from someone. Your sense of humor is the best. I always enjoy your column and your positive attitude.
April
I am on 25 mg Revlimid for 21 days and 20 mg dex every 7 days on a 21 day cycle. Then 1 week off and start again. On the week off I still take the dex .
Nearing the end of the 21 day cycle I experience tiredness that comes very quickly. I often say that if I don't lay down I will fall down. I have been on this regimen for 20 cycles. I find the dex seems to raise the energy level for about 3 days and then it wears off. So there are 4 days each week where the tiredness waves can happen. From other MM friends I talk with on a similar regimen the tiredness waves are common. I don't think the sun has any thing to do with it, as I live in Canada and the tiredness waves do not change with the seasons. My blood chemistry is stable, I take iron, B12 and many other supplements and minerals but the waves are there. I have managed to beat the neuropathy with vitamin B6 and lipoid acid twice daily. This was spelled out in a Beacon article some time ago.
I can control the waves mostly by having an afternoon nap after a morning of exercise, mostly walking and gardening in the summer.
Go with the flow and enjoy being on the green side of the grass.
Rneb, I was thinking of the lunchbox trees in Ozma of Oz. See http://www.gutenberg.org/files/33361/33361-h/33361-h.htm#Page_37 (Scroll to the next picture.)
A number of you have raised the issue of fatigue. Like most of us, I deal with fatigue on a daily and sometimes hourly basis. Fatigue is a given in my life. I wish a nap would recharge me, but that rarely resets the clock. The malaise is a distinct animal. Sometimes it hits when I am fatigued, sometimes it rolls in when I am at my most rested, and sometimes I get the double-whammy of dexamethasone speed and malaise combined.
Hi April, I am really sorry to hear of these ongoing issues with malaise and fatigue that you have! 13 rounds of Revlimid / dex does sound like quite a lot. I am on my 7th cycle of that and I am grateful that I can rest if I need to and get lots of sleep too. But I like to exercise, and that seems to help with energy levels too. The spring sunshine is great now for getting outdoors after our long winter. I hope that eventually I will get back into a remission and have more of a 'maintenance' drug regimen. Maybe your drug dosages will be readjusted too when it's safe to do so.
Which 'Mayo' clinic are you going to attend and will it be a road trip? Maybe that will be a break from routine too. I have met some of their doctors, who were speakers at seminars and talks I have been to, and thought they were all really kind hearted people! (Good speakers too!)
My grandmother used to make her own mayonnaise, and made egg sandwiches when we visited her. It was very tasty!
Nancy, I am going to the Rochester MN Mayo, which I think of as the Mother Ship. I should hear from Mayo early this coming week, and then can start to look at scheduling.
I am on a reduced level of Revlimid; we cut it back early on. I've had lots of fairly common low-level Revlimid side effects, most of which have resolved. My labs indicate I am in remission and have been for some months. I had a very quick lab response to Revlimid. But the history of my myeloma is that my body indicates problems (catabolic wasting, for example) even when my labs don't, and at this point, I need (and everyone else wants) an expert to confirm remission or flag the relapse.
I last made mayonnaise about 35 years ago. I remember it was very simple to make and incredibly delicious. I go through a lot of mayo in a year because I make all of my pie crusts with mayo. (Don't scoff, those of you who are reading this and making faces. With the apples already peeled, I can get a homemade apple pie (or 2 or 3) into the oven in under 15 minutes.
Hi April,
I can relate to your malaise / mayonnaise, like so many other folks here. Your column deals with a topic that affects a lot of us to some degree, but that we don't talk about very much.
Fortunately, my malaise seems to be more like your lapping waves rather than your crashing whitecaps. But it is annoying, nevertheless. I end up taking a nap many afternoons, rather than other things on my mental to do list. I'm into my 19th month of Revlimid maintenance, so I attribute what I experience to that. We'll see if I get more back to "normal" after the end of September, when the plan is to go off the Revlimid.
Best wishes to you for finding the source of your malaise and then successfully dealing with it. And thanks for another good, insightful column.
Mike
Hi April,
Are you also on Zometa? When I came off of myeloma drugs after ASCT, I noticed that my malaise (which I always thought was a result of Revlimid treatment) was actually caused by Zometa-induced fluctuating blood calcium and magnesium levels. When I stopped this treatment, I started to feel much better. Hope you find out what is causing your malaise. All the best
I have experienced exactly what you describe. It is extremely difficult to put into a rational, descriptive process. Hence 'mayonnaise'. Yet, that doesn't mean it is inaccurate. Just evasive.
Go to First Street S.W. and get your answers.
You are very wise and intuitive.
Best of luck.
April,
I have experienced a similar malaise to what you describe you are going through. In my case it comes on after being on dexamethasone for 3 or 4 months. I notice a distinct phases and changes from month to month when I start dexamethasone. I start out doing fine other than typical sleep problems. After being on dexamethasone for several it seems to affect my adrenal gland and the lab results from my endocrinologist show this. I start getting apathetic about everything and have little interest in engaging in conversation and interacting with other people. I see that in your case though your adrenal gland seems to not be the issue but if you lab results show a big shift from your normal numbers but they are still in otherwise what is considered the normal range maybe that is still the culprit. I hope you full better.
Hi April,
Nice column, as always. But I'm sorry to hear about the malaise you've been experiencing.
I think finn is on to something you should consider exploring. Not just Zometa, but Revlimid itself could be mucking with the mineral levels in your blood. I suspect your doctors have been watching those levels anyway, but you may want to check yourself to see what has been happening with your calcium, magnesium, and potassium levels. If any of those have been consistently outside the normal range, that could be a potential source of what you've been experiencing.
Good luck!
Mayo sounds like a great idea, not just for the mayonnaise problem, but in general it is important to have a specialist of Mayo caliber as a strategist, in addition to one's local oncologist. This is the approach I have been taking -- I see a specialist at Hopkins every six months or so and in the meantime see my local oncologist -- a very good doctor, but not someone I am going to rely on for strategic decisions, since she is not a myeloma specialist. The great thing is that she set this system up herself, working in partnership with a doctor at Hopkins. Another reason I like my doctor. Hope you find someone at Mayo who can take on this role, if you have not already done so.
Several of you have mentioned Zometa and for those of you experiencing anything resembling malaise, check it out. I don't do Zometa, so that too is not a factor. My calcium, magnesium, and potassium levels are also consistently within normal ranges. But for those of you who have not had those looked at, consider it. Sometimes the answer is easily, or at least partially, a matter of fine-tuning something you are already doing. Unfortunately, mine does not appear to be.
Victor (the comment just above this one) hit on an excellent point about having a myeloma specialist of a high caliber partner with your oncologist. Many of you are already treating at or with specialists who fit that description; I like Victor's approach of treating with the local non-myeloma specialist and consulting with Hopkins every 6 months. I have a feeling no matter what the outcome at Mayo, that will be one of my takeaways – that, and a sense of "I should have done this sooner."
Hi April
Thank you for your very interesting articles and this is the first time I have corresponded.
Yes, I was diagnosed with MGUS in 2006 and full symptomatic myeloma in 2012 and have since had the full range of chemo, and an autologous stem cell rescue (as it is known here in Australia), the ASCT, in November 2013. My paraprotein level (M-spike) showed it ugly head again in July 2014 and has since stayed at the same very low level, thus requiring no treatment except monthly Zometa.
However, since the ASCT, I have suffered severely with your described malaise. I have had antidepressants. No longer felt anything, but still had no energy. Last October came off the antidepressants and the endones for the back fractures but still the malaise was there.
In January I started using St John's wort as I was on no other medications except light pain killers and Zometa. The malaise has gone, yes the tiredness is still there, but I am doing so much more - back to cooking etc and a much brighter, happier outlook. At the same time I was diagnosed with a breast cancer, not related to the myeloma, and have just finished six weeks radiation after a lumpectomy. I have coped brilliantly with all of this. My husband states that I am a new person. I do note that the malaise (fatigue, depression) comes back as soon as I am late with taking the tablets - psychological maybe, but for the last 4 months I feel completely different. If possible, try St John's wort so long as it does not interfere with your other meds.
Keep writing!!!
Wow. I really was taken with your article, April, and do hope your Mayo appointment is coming up soon. I, too, went there (to seek a second opinion about the ASCT) and was most impressed with the whole place. I do hope they can find some answers for you.
I am a 7-year MM survivor, do have some days when I feel either achey and/or very tired, but resting when I need to (even canceling something I wanted to do) seems to work for me: if I give in to it, I get over it. That doesn't sound like it would work for you now, but you might keep it in mind for later.
My best wishes, and I hope you will keep us posted.
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