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Letters From Cancerland: “There’s Mayonnaise All Over Cancerland!”

By: April Nelson; Published: April 17, 2015 @ 12:36 pm | Comments Disabled

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 [1] (lenalidomide), 15 mg, three weeks on, two weeks off, 20 mg of dexamethasone [2] (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 [3].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


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URL to article: https://myelomabeacon.org/headline/2015/04/17/letters-from-cancerland-theres-mayonnaise-all-over-cancerland/

URLs in this post:

[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[3] here: https://myelomabeacon.org/author/april-nelson/

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