Please Subscribe to get a daily link to Pat's blog via email


Your privacy is important to us. We will never spam you and keep your personal data secure.

Hopeful affirmation and refractory myeloma defined

Home/About Pat, Inspirational, Supplements/Drugs, Therapy/Hopeful affirmation and refractory myeloma defined

Hopeful affirmation and refractory myeloma defined

Before I get started, did you happen to read Danny Parker’s comment yesterday in response to Mark’s hope that myeloma researchers can and will focus more on new ways to attack myeloma cells, instead of ways to make more of the same a bit better?

We need some new classes of drugs that hit different pathways. That’s why the ARRY-520 drug (MEK pathway) may be more important.

Same with the Dana Farber JQ1 effort (bromodomain inhibitor- MYC pathway).

My guess is that the MM magic combo will come from a mix of hit several pathways at once which evades the MM cells’ ability to mutate around it.

That may make a difference in our life expectancy that is not measured in months, but in a decade or more.

Hard to argue with that.  Thanks, guys!

Yesterday I wrote that “I want to take a step back and define what it means to be refractory to a novel therapy.”  I promised to reveal what the word, refractory, should mean to us.  To help me, I had the opportunity to discuss this with my myeloma specialist, Dr. Melissa Alsina.

Like I hope most of you can, my specialist meets with me every two or three months.  But I always take things one step further, asking Dr. Alsina a wide variety of questions that I get from readers or need answered for upcoming projects.

Lost is all of this is what Dr. Alsina had to say about me and my progress.  I will fill-you-in after I return home from watching the Rose Bowl parade and game on Tuesday.

At last week’s appointment, Dr. Alsina surprised me when she specifically addressed what refractory really means.

I had just shared with how I was experiencing an alarming increase in the severity of my peripheral neuropathy at the end of my six week, four weeks on/two weeks off Velcade cycle.

If that continues, Dr. Alsina suggested we substitute Kyprolis for Velcade.  “Carfilzomib (Kyprolis) isn’t FDA approved for use as a maintenance therapy, but I have already had good luck using it with several patients.  And so far, insurance hasn’t been an issue.”  She said.

I responded by reminding her that I didn’t want to stop using an important drug like Velcade as long as it still worked, regardless of the side effects.  “I sat listening to presenters at ASH talk about how being refractory to Revlimid and Velcade leaves relapsed patients with an 8-10 month median overall survival (OS) rate…”

Dr. Alsina stopped me mid-sentence. “You aren’t refractory to Revlimid.”  She said, firmly, and went on to explain that just because someone stops using a drug, doesn’t mean it has stopped working.  She added that those doctors are dealing with patients where nothing works anymore.  And that a patient who is truly refractory to both Revlimid and Velcade has most always developed a form drug resistant disease that rarely responds to anything else.

Here is how the Mayo Clinic website has to say.  If you read between the lines, it provides a lot of insight into this.  I have highlighted a few key points in BOLD:


Most people who are treated for multiple myeloma eventually experience a relapse of the disease. And in some cases, none of the currently available, first line therapies slow the cancer cells from multiplying. If you experience a relapse of multiple myeloma, your doctor may recommend repeating another course of the treatment that initially helped you. Another option is trying one or more of the other treatments typically used as first line therapy, either alone or in combination.

Remember that relapse does not necessarily mean your myeloma has become drug resistant.  Increasing the dose and/or frequency of the drug or drugs that had been working may stop or slow the relapse.  Going back to drugs that worked in the past may help.  Different combinations could also do the trick.

My autologous stem cell transplant 17 months ago didn’t do much to help, except it seemed to hit a re-set button for Revlimid, which had stopped working following over four years of continuous use.  I will write more about this later, including why Dr. Alsina recommended I drop Revlmid at our appointment.  “But that doesn’t mean it has stopped working.”  She asserted.  “The same with Velcade.  Just because we stop using it doesn’t make you refractory to it.”

Dr. Alsina added that  “You aren’t refractory to either one of these drugs.”  Now that’s reassuring!

Today Pattie and I are preparing for tomorrow’s long, exciting day.  First, up at 5 am to claim our spot on the curb so we have front-row seats for the Rose Bowl Parade.  Then a two mile walk to the game, where our Wisconsin Badgers will face Stanford.

Its a good thing we have been able to rest-up here in San Diego while staying with our old friends, Ed and Michele.  We visited the waterfront and drove out to Coronado Island to eat and shop a bit, but we were back early and have now had two good nights sleep.  We are heading up to L.A. in a few minutes.  Can’t wait!

All reason enough for me to feel good and keep smiling!  Pat