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Pat’s Place: What a Wonderful Word – Remission!

By: Pat Killingsworth; Published: August 2, 2012 @ 10:48 am | Comments Disabled

Monday was a big day for me.

After undergoing 36 consecutive weeks of Revlimid, Velcade, and dexamethasone therapy since my stem cell transplant, I was hoping that Monday would be the day I could officially begin my easier-to-tolerate maintenance regimen.

Combination therapy with Revlimid [1] (lenalidomide), Velcade [2] (bortezomib), and dexamethasone [3] (Decadron), known as RVD, had been tough for me to take over the last few months.  My platelet and white blood cell counts had been low and continued to edge down.  I was sore and out-of-sorts.  My body was screaming for a break!

Things have been difficult since my autologous stem cell transplant one year ago.

I had used RVD as induction therapy prior to my transplant.  But it hadn’t bothered me as much as it does now, post-transplant.

Since my transplant didn’t reduce my M-spike (monoclonal protein level) – it actually went-up instead of dropping – my doctors had no choice but to try RVD again.

The good news is that RVD is working!  My M-spike has dropped like a stone.  And after nine long, difficult months, it almost went away.

I have been wanting to cut back my doses and to drop the dexamethasone.  But my myeloma specialist, Dr. Melissa Alsina, and my medical oncologist, Dr. Vikas Malhotra, both agreed that in order to do that, my myeloma needs to be stable for at least three months.

Monday was the big day!  Would my myeloma remain stable, hovering around the 0.1 mark? Or would it start inching back up?

I hadn’t seen Dr. Alsina for three long months, so I was anxious to learn just where I stood.   We started discussing why my bone and muscle pain might be a bit worse lately, and why my peripheral neuropathy symptoms (pain, tingling, and loss of sensation in the extremities) had continued to progress.

Ten minutes into our meeting, Dr. Alsina looked down at my chart and said softly, “I see you are in remission.”

Remission?  Really?

“Your M-spike is gone.  Let’s talk about what we should do for maintenance.”

Gone?  Dr. Alsina had buried the lead!

Labs run by both Dr. Alsina and Dr. Malhotra no longer showed any evidence of active multiple myeloma.  My M-spike read “zero” in both lab reports.

I noticed that Dr. Alsina used the word “remission,” not complete response (CR).  In order to confirm that I was indeed in CR, I would need a bone marrow biopsy that showed “no myeloma cells present,” along with fewer than 5 percent plasma cells.

“But whether you are in CR or not, it won’t change my maintenance therapy recommendation for you,” she said.

Since I have very hard bones, my bone marrow biopsies are always sedated, so undergoing a bone marrow biopsy is a big deal.

I agreed.  “I like that about you, doctor. You don’t order unnecessary tests.”

So what will by maintenance therapy be?

Currently, I am taking 10 mg of Revlimid for three weeks, followed by one week off.  Then Velcade once a week for four weeks, followed by two weeks off.  Finally, 40 mg of dexamethasone every Wednesday.

Dr. Alsina's recommendation doesn't change things up much.  Revlimid therapy stays the same, although if my platelets and white blood cell counts continue to drop, she may order the dose reduced to 5 mg.  My Velcade schedule is a bit better: once a week for four weeks, then four weeks off instead of two.

But best of all, no dex!  Which makes sense, because studies I have read imply that dexamethasone becomes less effective over extended periods of time.

So that’s it!  I hadn’t entered our meeting hoping for or focusing on my prospects for achieving remission.  It had all been about being able to stop my toxic RVD therapy.

But after hearing that magic word – Remission – I found myself smiling inside and out.

I know remission is only temporary.  And that I will need maintenance therapy to help me stay there as long as possible.  But for now, no worries!

For a long-suffering multiple myeloma patient, it doesn’t get much better than this.

For all of you who have yet to hear the words, “You’re in remission,” may you experience this hopeful feeling very soon.

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.

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/2012/08/02/pats-place-what-a-wonderful-word-remission/

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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