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Sense of community among myeloma patients is strong!

Home/About Pat, Caregivers, Inspirational, Transplants/Sense of community among myeloma patients is strong!

Sense of community among myeloma patients is strong!

Pitcher Mel Stottlemyre’s extended remission came up at a support group meeting I attended yesterday; one of the patients shared how he’s been in complete response and drug free for over nine years.

Pat's beach head shotIsn’t that how it should be?  How long will it take doctors and researchers to get this thing figured out well enough to help the majority of patients enjoy a decade without slugging-it-out month by month, using ongoing maintenance, being forced to switch drug combinations every year or two; living with the uncertainty.  Will the new drug(s) work?  For how long?  Asking, “I’ve got to what?  Leave work, fight traffic and get an IV day 1,2,8,9,15 and 16?

That’s the standard dosing schedule for carfilzomib (Kyprolis), the newly FDA approved proteasome inhibitor, developed by Onyx and now manufactured by Amgen; the topic of last night’s monthly support group meeting.  I try to make it over to Jacksonville whenever I can; the meeting is held at Mayo Clinic the second Wednesday of each month at 6 PM.

Getting there is easy; each month my new, dear friend, co-leader Dianna, picks me up at my seaside home at 4:45 sharp.  Last night I was late–I forgot about the meeting!  There I was, sitting at my desk, working local hotel owners by phone, trying to reserve blocks of rooms and negotiate the best rates for next year’s Beach Party event.

I don’t know how she got through, but just before 5 PM my phone rang, “Pat, we’re sitting here in your driveway.  Where are you?”

After graciously agreeing to wait, I skipped the shower and shave, grabbed a clean shirt, a bag of my books and raced out the door.  I’m so glad Dianna waited!

Riding along was newly diagnosed, retired nurse and another new, best friend, Nancy.  Nancy and I visited for an hour yesterday–we sat across from each other in the small infusion room at local 21st Century Oncology.

Our nurses are the best!  I wanted to give a shout-out to Debbie, one of the best “stickers” I’ve ever had.  That woman can start an IV with less pain then a standard blood draw.  First time, every time.  And no one cares more about her patients than our other nurse, Angela.  I really believe she’d switch places with us if she could.  How fortunate to have two great nurses in a small, 10 station infusion unit like ours here on Amelia Island.

A retired nurse herself, Nancy is trying to decide whether to undergo a stem cell transplant or harvest and wait.  Not an easy decision.  She has a good specialist: Dr. Chanan-Khan, Head of Hematology at Mayo Clinic-Jacksonville.  He’s advocating waiting, but Nancy’s kidney’s have been affected–and she’s in her late 60’s–so Nancy wonders if waiting might risk losing the option.  Patients shouldn’t be forced to make decisions like this, especially new ones.  I’m trying to help.

Like Nancy, Dianna is also a retired nurse.  She was caregiver to Hunter.  I only met Hunter once, but everyone that knew him felt he was an incredible guy: smart, engaging and upbeat.  Hunter died last year after battling myeloma for over a decade.

Unselfishly, Dianna has continued to co-lead the Jacksonville group.  Her friendship and counsel means so much to me.  After our 50 minute ride to Mayo, I waited outside her driver side door and insisted on stealing a long, hard hug.  Dianna and Nancy both listened to me rattle on about my upcoming transplant adventure (I refer to it as going away to summer camp), jumping in with thoughts and advice whenever I paused long enough to take a breath.

Make that a deep breath.  One of the most common side effects of Kyprolis infusions is shortness of breath.  Another good friend, Tracy, with Onyx, outlined all of the possible side effects during her presentation for the group–close to 50 people jammed into a way-to-small-room near the Mayo Clinic teaching auditorium.

Tough to breath?  Maybe the cost has something to do with it.  The billed rate for six monthly infusions of Kyprolis is a whopping $26,000. Maybe that’s what takes my breath away!  Think having insurance isn’t important?

Tracy brought sandwiches and sweet treats; always an attendance booster.

I first met Tracy last year when she spoke to the group I started on the Gulf Coast.  I was there to talk about my Beach Party event that I’d moved from Tampa to Fernandina Beach once Pattie and I moved cross-state.  She’s a nurse educator and does an awesome job.

Listening to her presentation, it didn’t take long to figure out that Kyprolis is a lot stronger than Velcade; along with that comes some great results for a lot of patients–but the side effects can be a bit scarier, too.

With Velcade, peripheral neuropathy has always been the number one concern.  Delivering Velcade sub-q has helped a lot of patients (including me for over a year) avoid a lot of that.

But Kyprolis… Investigators are learning that it’s even more effective at higher dosing.  Fortunately, it looks like higher dosing may mean fewer doses are necessary.

But being a representative of the company, FDA regs prevented Tracy from speaking to a lot of this; I’m getting my information from abstracts we’ve examined (Yes, most have been posted right here at MMB, don’t you remember?) following last December’s ASH and ASCO in Chicago this summer.

Come on!  Two days ago? Dr. Rajkumar’s Top Seven ASCO abstracts from this year’s meetings?

Dr. Rajkumar shares list of most important ASCO trials


I rewrote part of the post; might be worth another look, especially if you focus on the Kyprolis related data.

I felt so much love and support in our overstuffed meeting room.  The food was good.  The “Good luck in Iowa!” well wishes were heartfelt and uplifting.   I really felt loved last night; that my fellow patients and caregivers understood and were rooting for me.  No one questioned my decision.  Everyone was upbeat and optimistic about my chances.  Priceless!  The bond myeloma patients and caregivers share must be like a group of soldiers that fought together in a far away land; brothers and sisters for life.

But so many don’t get the opportunity to experience this amazing sense of community; less than 10% of myeloma patients and caregivers ever make it to a support group.

That’s OK.  I get the same type of feeling working with Debbie and Angela, sticking around an extra half hour to help Nancy parch through her difficult, “Should I transplant right away or not?” decision.  There are impromptu meetings taking place everyday, in big clinics and small.  Anytime several members of the myeloma community come together to update their stories, share their feelings and support each other.

Myeloma sucks, but I’ve sure met some wonderful people since my diagnosis.

My long lost cousin, Julie, called me today.  I wouldn’t have reconnected with her if I wasn’t ill; she’s the one that found me on Facebook.  Face it, tt’s a mixed bag.  Take the good with the bad, I guess.

But we’re alive!  Everything wasn’t perfect before we had cancer.  More drama now–it’s not dull, that’s for sure!  Cause for celebration, don’t you think?

Feel good and keep smiling!  Pat