Why the answer to ‘Should I call the doctor?’ is always yes

Note: This column describes the author’s experience with Revlimid (lenalidomide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

I recently marked seven years since my multiple myeloma diagnosis. This week I’m marking another milestone — four years since I went off maintenance therapy.

That wasn’t the initial plan, but sometimes our journeys include detours.

Strangely enough, my detour resembled the one described by fellow columnist Samuel Ike after his mother’s diagnosis with immune thrombocytopenia (ITP). It’s the same diagnosis I got four years ago this week.

The experience reinforced my firm belief that if you ask, “Should I call the doctor?” about something, the answer is always yes.

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Bruises were Samuel’s mum’s first symptom, he said. Mine were blood blisters inside my cheek. I thought I’d bitten it. Two days later, I woke up with dark bruises on my left hand, my forearms, and around my right eye.

I’d had bruises before, but these were popping up from the slightest pressure. So I called my doctor, who ordered labs. Then I called in sick to work. “I look like I went 10 rounds in the ring with Mike Tyson,” I told my co-workers.

“You could beat Mike Tyson,” one of them replied. Well, no. I can’t. But to this day, that comment still makes me smile.

A few hours after my lab visit, I got a call to get to the hospital as quickly as possible. My platelet count was 2,000, meaning 2,000 platelets per microliter of blood. The lab’s reference range — that is, what’s considered normal — bottomed out at 140,000.

I wound up in a room two doors down from where I stayed during my stem cell transplant in 2019. My initial diagnosis was idiopathic rather than immune thrombocytopenia, meaning they didn’t yet know what was killing off my platelets. A little detective work was needed.

Eventually, my doctor surmised that I had developed an immune response to Revlimid (lenalidomide) and told me to stop taking it. A combination of intravenous immunoglobulin therapy and steroids helped bring my count back up, though it is nowhere near normal, even today.

Not a common case

Revlimid’s website does list thrombocytopenia as a possible side effect. But my case was a new one for my doctor. Until Samuel’s column, I hadn’t encountered anyone else with an experience anything like mine.

Four years down the line, ITP mostly goes unnoticed by me, except when I bump into something and get a big bruise! Hopefully, his mother’s experience will be similar.

For me, the big takeaway is that even little things could be a sign of big things. I need to pay attention and make that phone call to my doctor when something doesn’t seem right. I confess, I sometimes hesitate. No one wants to seem like a hypochondriac, after all.

But it’s better to make the call and have the doctor tell you it’s nothing to worry about than to wait and wind up with a more serious emergency.

Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.