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Pat's Place: Be Careful What You Wish For

By: Pat Killingsworth; Published: June 19, 2014 @ 12:04 pm | Comments Disabled

“Inconclusive.”  That’s how my myeloma specialist described my current con­di­tion two weeks ago.

While I initially struggled with this description – because there was no clear-cut solution for it – I slowly came to see the upside of my current situation: It allowed me to not hurry to the next treatment, but rather em­brace every day, no matter how uncertain or painful it may be.

My new specialist at the Mayo Clinic, Jacksonville, came highly recom­mended by several of my contacts at the Mayo Clinic in Minnesota. I was treated there for the first two years after my diagnosis, before moving to Florida and starting a successful five-year run at the Moffitt Cancer Center in Tampa.

Like most of you, my form of multiple myeloma is quirky. On the surface, my myeloma is the most common type: IgG Kappa, measurable with a serum M-spike, the most common myeloma marker. But my IgG protein numbers are normal. My urine shows no sign of involvement. Even my free light chains read normal.

Fortunately, my M-spike has been a reliable marker over the years. It doesn’t jump around month to month. Instead, it slowly trends up or down, usually in 0.1 g/dL increments.

Unfortunately, my M-spike has been inching up the past five months. The lesions identified by a PET scan and X-rays four months ago had started growing when my M-spike was only 0.4 g/dL; it is now at 0.7 g/dL.

The myeloma specialists at Moffitt and the Mayo Clinic agreed that I will need to make a therapy change. However, they couldn’t agree on what to try and when to start.

Complicating things: my white counts have plummeted to the point that I’m considered neutropenic, leaving me more susceptible to infection.

This was to be expected because any time I used Revlimid [1] (lenalidomide) at a dose of 10 mg or more in the past, I have had trouble keeping my white counts up (I’m currently on 15 mg daily for the standard 21 days on and 7 days off treatment cycle).

My platelet count was also low. Revlimid seems to suppress that, too. That’s a holdover from my autologous stem cell transplant way back in the summer of 2011, which seems like light years ago!

My busy and stressful schedule over the past few months probably hasn’t helped either. The last few weeks have been crazy busy for my wife Pattie and me. We moved into an unfinished home that we’re renovating in the sleepy ocean town of Fernandina Beach, and Pattie started her new job north of Jacksonville on Amelia Island.

Fernandina Beach is almost four hours northeast of our former home in Weeki Wachee -- just far enough away to make working with a contractor and moving challenging. I’m sure we’ll enjoy comparing and con­trast­ing life on the Gulf Coast with the ocean side of Florida once we’re a bit more settled.

In the meantime, here I sat, caught in no man’s land.

My new specialist didn’t want to make a therapy course correction without more data. My M-spike has held at 0.7 g/dL for the past few months; evidence that Revlimid-Velcade [2](bortezomib)-dexamethasone [3] (Decadron) (RVD) was still doing something.

He and I agree that this would be an opportune time for me to try a clinical trial. The Mayo Clinic is recruiting for several innovative studies, including one investigating the new compound LCL-161. But every trial we checked requires either an M-spike of over 1.0 g/dL or a light chain value of 10 or more; mine is an in­ex­plic­able 0.0.

Inconclusive. How frustrating! Everyone agrees that I’m going to need a therapy change.  I haven’t used any of the dozen therapy combinations except for RVD. My emotional response: Pick one and let’s get on with it!

Be careful what you wish for!

Last Thursday, I had another PET scan. Just when I was getting used to the idea of sticking with RVD for a while longer, I got a call from my doctor at the Mayo Clinic Friday morning. The scan showed new lesions were forming in a half dozen new locations, including the back of my head, the base of my skull, and my neck.

My specialist and I had checked X-rays taken two weeks ago together, shot by shot. No one disputes that I’m living with several painful lesions.  But none threatened to lead to a debilitating bone break. With new lesions developing again, he affirmed it was time for a therapy change.

"Let's start with Pomalyst [4] (pomalidomide; Imnovid) and dex," he said.

So that's it. I'm officially refractory to both Revlimid and Velcade. After seven years, I've reached a fateful turning point. I'll share more about what this means and why it’s so important next month.

Until then, wish me luck! Let's hope and pray that Pomalyst works as well for me as it has for many of you.

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [5].

If you are interested in writing a regular column for 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/2014/06/19/pats-place-be-careful-what-you-wish-for/

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/

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

[5] here: https://myelomabeacon.org/author/pat-killingsworth/

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