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Letters From Cancerland: The Velcade Velocipede

By: April Nelson; Published: March 19, 2013 @ 3:35 pm | Comments Disabled

Velcade is my velocipede.

Velocipedes were all the rage in post-Civil War America. Known also as “boneshakers” for the rough physical treatment these early bicycles gave their riders, they proved tricky to master.

Novelist Louisa May Alcott wrote a velocipede into her novel An Old-Fashioned Girl. A character in the novel, Tom, “whizzed by [on his velocipede], arms and legs going like mad, with the general appearance of a runaway engine.”

With no brakes and only primitive steering at his disposal, Tom soon ended up in the gutter, with a “great cut” that required stitches.

I know just how he felt.

I have had myeloma for so long that the only “gold standard” drug when I was initially diagnosed was thalidomide [1] (Thalomid). The single biggest change to the Cancerland landscape is the plethora of new drugs, with Pomalyst [2] (pomalidomide) being the latest addition to the pharmaceutical pantheon.

When I relapsed and resumed treatment this past fall, my oncologist recommended and prescribed Velcade [3] (bortezomib). My current regimen is one weekly subcutaneous injection with a chaser of dexamethasone [4] (Decadron), three weeks on, one week off.

I just completed my fourth full cycle on March 5. As I write this column, I am slated to meet with my oncologist on March 19, review lab results, and perhaps start a fifth cycle. I say “perhaps” because, while I feel (and hope) Velcade is being effective against my myeloma, I, like Tom, feel I am whizzing by, arms and legs going like mad, doing my best impersonation of a runaway engine.

Having never taken any drug other than thalidomide, I did not know what to expect with Velcade. I tolerate it well, with little nausea. I have not gotten a rash or any other nasty side effects. Those are all good things.

But 16 weeks into treatment, issues are popping up on the periphery. After an initial burst of renewed physical energy, I am experiencing growing fatigue. I feel more physically fragile. And I am starting to have mild peripheral neuropathy (pain, numbness, and tingling due to nerve damage) in my fingers and palms.

The sensation was faint whispers at first, so much so that I would rub my palms together and think I was just being hypersensitive. Now the tingling has grown to where I have to name it. I find myself squeezing my hands randomly to try to push away the sensation.

This newest development is upsetting. The treatment I underwent in 2005 and 2006, a clinical trial which had me taking 400 mg of thalidomide on a daily basis for weeks on end, left me with a moderate amount of peripheral neuropathy in my feet. It never fully resolved; I have learned to live with it. I’m not a runner or a dancer, so the impairment to my feet, while annoying, is tolerable.

But my hands are different. I write my column drafts longhand, I carry on a lot of personal correspondence longhand, and I spend a lot of the workday with either a pen or a keyboard close at hand. I bake a lot, and baking is a very tactile experience. I use my hands a lot and am reluctant to surrender them to peripheral neuropathy.

There is one thing more nagging at me, as long as I am laying my cards on the table. It is a quiet thing, waiting on the sideline, biding its time. I sense that the treatment, as opposed to the disease itself, is wearing me down. More than one fellow Beacon columnist has pointed out this harsh aspect of myeloma: the treatment extracts its own toll.

And right now, Velcade is extracting its own toll on me. For the first time in a long time, I am acutely conscious of the sense of time running out.

My oncologist and I have a long, close relationship. We respect each other’s opinions and expertise: his as a hematologist, and mine as someone who has lived with myeloma for over eight years. I am ready to talk, and ready to listen, and think it is time to talk and listen.

After Tom’s crash, he was escorted home to be sewn up, with a “good-natured Irishman, trundling ‘that divil of a whirligig,’ as he disrespectfully called the idolized velocipede.”

I am riding my own “divil of a whirligig” for the present. Velcade is my velocipede and it is shaking me to the bone.

April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here [5].

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

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Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2013/03/19/letters-from-cancerland-the-velcade-velocipede/

URLs in this post:

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

[2] Pomalyst: https://myelomabeacon.org/tag/pomalyst/

[3] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

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

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

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