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Pat's Place: A Multiple Myeloma Patient's Perception Of Time

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Published: Aug 5, 2010 11:41 am

Last week, I spoke briefly with Greg Geissman, a public relations contact at Celgene, about the projected timeline for a new Phase 3 pomalidomide  research study in multiple myeloma.

As Greg finished describing the timeline, my mind wondered. I began to think about how different people view time.

Greg explained that it will take six months or more to find enough qualifying patients willing to participate in the study. The study itself will then take several years to complete. A successful result will hopefully lead to FDA fast track approval, which could take an additional six months or more. That's over three years, people!

Now, that may not be unusual as research studies go. As a matter of fact—considering this could be one of the studies that convinces the FDA to approve this important new multiple myeloma drug—three years may not be unreasonable.

But three years can seem like an eternity for a multiple myeloma patient.

There is normal time. There is research, drug development time—which is very, very slow. Then there is a multiple myeloma patient's perception of time—an accelerated, fast forward version.

As women age, they sometimes use the expression, “My biological clock is ticking.” This highlights the urgency—and sometimes panic—that hopeful mothers feel as they age. Those of us diagnosed with multiple myeloma can have similar feelings.

For us, time is compressed. It is bad enough you don't feel well, may not be able to work full time, and need to constantly impose on family and friends for help. Dealing with the reality of a cancer-shortened life just adds to the stress.

Speaking of commonly used expressions, here are a few I hate that relate to time:

  • “Don't worry, there is always tomorrow.”
  • “Wait until next year.”
  • “Be patient!”
  • “Killing time.”
  • “Nothing but time...”
  • “I've got too much time on my hands!”

Worst of all, I can't stand any time reference beginning with “I can't wait.”

I can't wait until spring. I can't wait until I graduate, start my new job, get out of school, take a vacation, or retire... What about all of that precious time ticking away between now and then?

The simple joy of a short phone call from a grandchild. A day with fewer than normal treatment side effects. A sunrise or sunset. These are simple pleasures which almost all of us can experience and appreciate.

Don't “wait” until you feel better or your multiple myeloma is gone to experience life. Time is precious. Don't waste a second of it!

Feel good and keep smiling! Pat

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2 Comments »

  • janice schmeeckle said:

    I am really sorry to hear that we will have to wait that long for pomalidomide to be approved. If they are having such a hard time finding patients, perhaps they aren't looking in the right places. There are plenty of myeloma patients in Nebraska and few if any doctors to take care of them. There are 4 cases in and around our small (750 people) community. It does seem strange that pom, being a sister drug of thal & rev, can not be approved faster, at least on a compassionate/unmet need basis.

  • Pat Killingsworth (author) said:

    Janice-
    Like most multiple myeloma related drug studies, the first wave of attack are relapsed and refractory patients. There are specific criteria which need to be met. Serious neuropathy? You're out. Other health issues? Disqualified again. Then there is geography. Nebraska is a long way from Rochester, MN or Arizona or Jacksonville where Mayo Clinics are located and several of the new studies are centered. Then what about the patients. They need to be ready and willing to sign-up and possibly travel. The slow and deliberate way Celgene is developing pomalidomide is another story. They don't seem as aggressive as Onyx in rushing carfilzomib to market. Greg had no comment about this part. I asked the question, gave my theories about why it is taking so long, and he said nothing. There may be a story here--or it may be a simple case of a large corporation just not pushing hard enough. On a positive note, early test results look very promising for pomalidomide. Just hard to be patient! That's what this week's column was all about- Pat