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Pat’s Place: My Myeloma Therapy Is Working - But Not Without Significant Side Effects

By: Pat Killingsworth; Published: December 1, 2011 @ 8:47 am | Comments Disabled

I have experienced a lot medically since my previous column.  Some of the news is good.  But there have also been a few hiccups along the way …

Let’s focus on the good news first. 

As hoped, the combination of Revlimid [1] (lenalidomide), Velcade [2] (bortezomib) and dexamethasone [3] (Decadron), commonly abbreviated RVD, that I started six weeks ago is working.

My monoclonal protein number - or M-spike - has been cut in half from 0.6 to 0.3.

This is especially important in my case since I have a history of myeloma-related bone involvement, starting around that 0.6 level.

My myeloma specialist, Dr. Melissa Alsina, recommends we stay the course and continue using RVD for a minimum of several more months.

The goal: Continue to knock-down that M-protein number, hopefully to 0.0.

A sound plan -- if my body allows us to continue that long.

It seems this RVD combination is doing more than lowering my M-spike.  It is also causing my red blood cell counts, white blood cell counts, and platelet numbers to crash.

Additionally, my peripheral neuropathy is getting steadily worse.  Not only are my feet, lower legs, and hands numb and tingling 24/7 but my entire body feels like it’s a tuning fork.

I refer to this as “full body neuropathy.”  I can feel my body vibrating from head to toe, leaving me short of breath and feeling anxious.  As you can imagine, this is very unsettling and disconcerting. 

That’s it?  Nope.  Last week, my blood oxygen dropped to an alarming 68 percent while exercising.  (It should be well over 90 percent.)

This 68 percent level concerned my medical oncologist, Dr. Malhotra, so much he immediately ordered a chest X-ray and a CT lung scan.

I asked Dr. Malhotra what he was looking for.  “I think you have a pulmonary embolism [blood clot in the lungs],” he said, with a look of concern on his face.

“If not, you are most likely experiencing inflammation in your lungs, caused by Velcade,” he added.

It turns out that neither one was the case.  My CT scan and X-ray were clean.

My wife, Pattie, urged me to purchase an oxygen/heart rate monitor at the local drug store for $50.  

A good investment.  This small, battery-operated device is about the size of a Matchbox car.  It showed my oxygen levels stabilizing.  But it doesn’t feel that way. 

Anything else?  Yes.  Like many multiple myeloma patients who are undergoing chemotherapy, I experience severe, nightly leg cramps, bloating caused by dexamethasone, and flu-like symptoms following Velcade infusions.

But this isn’t a “pity party.”  News that the RVD combo therapy is working far outweighs any uncomfortable and inconvenient side effects.

The bottom line:  I’m doing OK!  And hearing from so many of you really helps.  Your supportive comments make it a lot easier to carefully roll out of bed and get going each morning -- and I’m thankful for that!

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. Going forward, his columns will be published once a month on the first Thursday of the month.

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


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

URL to article: https://myelomabeacon.org/headline/2011/12/01/pats-place-my-myeloma-therapy-is-working-but-not-without-significant-side-effects/

URLs in this post:

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

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

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

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