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What an amazing experience! (Part Three)

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What an amazing experience! (Part Three)

I’m not going to recap what our media panel discussed on Wednesday, except to reiterate how Dr. Raje and nurse Beth’s frame of reference has forever changed how I will define “cure” when used with multiple myeloma.

Dr. Noopur Raje’s view that we are close to being able to keep myeloma patients alive indefinitely was a game changer for me.

Is it fair that we might need to take a series of expensive, sometimes caustic drugs indefinitely?  NO!  But it isn’t fair that some diabetics need daily insulin shots, suffer through painful peripheral neuropathy (I can relate to that!) or eventually need to have a foot or leg amputated.  Or that patients with chronic heart conditions need constant care and a wide array of different meds.  Or that dialysis patients have to endure the pain and discomfort caused by the repeated insertion of large needles into each arm three or four times a week while they wait for a kidney transplant that may never materialize.

Despite being worn-down by chemotherapy and feeling poorly most of this week, somehow I returned home to Tampa more confident than ever that really smart people like my co-panelists were going to be able to help keep me stay alive for a long, long time.

And that’s what makes all of the travel and uncomfortable inconvenience worth-it for me.

But moving on, the discussion didn’t stop there.  I was quick to point out the disconnect between how an oncologist or clinician views the progress made over the past decade and how a newly diagnosed patient feels.

Let me explain.  Medical professionals have a completely different frame of reference.  I used the example of a young medical oncologist, who treated his or her first myeloma patient 12 years ago.

Can you imagine how hopeful that oncologist feels?  12 years ago, there were very few treatment options–and the average multiple myeloma patient only lived three or four years.

Today, an otherwise healthy,  newly diagnosed patient can expect to live seven, eight, ten years or more, effectively doubling their life expectancy.   That is a lot of progress made in a decade.

Great!  But a newly diagnosed patient and caregiver doesn’t know or understand any of this.  They probably didn’t even know what multiple myeloma was 12 years ago.  Heck, they probably hadn’t heard of this type of bone cancer until their actual diagnosis.

All these shell-shocked, fearful people hear is “I’m going to die.”

I volunteered how important it is for medical professionals who work with multiple myeloma patients to realize this, keeping the patient and caregiver’s feelings in mind.

I also interjected how important I felt it is for patients  to accept their diagnosis.  Because up until that point,  grasping terms like “progression free survival”  and “overall survival”  is next to impossible.

Why?  Because these terms  reference death and re-open the “scab” of dealing with mortality, death and dying.  Let’s face it.  It is difficult to work with your doctors to develop an effective long term treatment plan if you can’t be objective about your cancer.

Yes, this was pretty  deep and heavy stuff!  But I found it strangely exhilarating–especially as the discussion progressed to how balancing drug dosages and dosing frequency can help improve a patient’s quality of life.

And yes, it is difficult watching and waiting for the next blood test or bone marrow biopsy.  But as Dr. Raje argued, if a patient is able to do the things which provide meaning in his or her life–like golfing or the ability to travel–then hasn’t it all been worth it?

I just wish my readers could have been there.   Millennium officials assured me that they would try to make transcript copies and/or video available to you sometime in the near future.

Until then, I would like to thank Millennium Pharmaceuticals and my co-panelists for allowing me to share my views–along with the views of a number of my readers–with the media Wednesday.

The only unfortunate part of my whirlwind visit was that I wasn’t able to bring back specific info about sub-q Velcade and how to best avoid related side-effects.

There simply wasn’t enough time–and the technical experts I needed to question were not watching the event on site.

That’s OK.  One more thing to track-down at ASH.

And speaking of ASH, now is not the time to take it easy.  Instead, it’s time to start preparing for five days in San Diego beginning next Friday, December 9th.  Is it really December already?

I can’t wait to pass-along the latest multiple myeloma research news from the world’s largest hematology conference.

Early indications point to an especially newsworthy conference–but no major bombshell, miracle type revelations, I’m afraid.

No, there will simply be more of the same, steady progress we have been seeing over the past few years.

And that’s a good thing!  Please consider the alternative.   At least many of us still have options…

Feel good and keep smiling!  Pat