Dominate for Kyle & His Team

I was recently made aware of a 19 year old named Kyle who is taking on AML up at UM C.S. Mott Children's Hospital. He is a rock star guy from everything I have heard about him. I was invited to visit him today (thanks Ann!) to help provide some dominate cheer as Kyle continues to try to knock the AML down to the point where he can go to transplant, and his only hope for a cure.

Being back at UMHS, but this time on my own accord and not because of a blood draw, chemo infusion or transplant, I was awaken again with the reality that there are people everywhere, everyday that we will never know who are giving their all to kick cancer and continue to dominate life. Kyle is one of them.

Dominate prayer, positive thoughts, whatever you may call it, so Kyle knows Love surrounds him. Also, join Team Kyle by considering to get swabbed and added to the bone marrow registry. You could save a life.

My Life

This describes it all. I feel Wildly Blessed. Cheers to domination.

I need to learn to keep my mouth shut

Several months ago several individuals alongside the UMCCC develoment office had the idea of getting a team of dominators together to participate in the Annual Dexter-Ann Arbor Run who want to take on the mission of Cancer Kicker: Inspire others and Kick Cancer...specifically Multiple Myeloma.

I thought this was a great idea and that if 10 people signed up, I would run the 5k. I also foolishly said if 20+ sign up to take on this charge, I would run the 10k. I must admit, I was expecting just a handful of people to be up for this challenge. Well...guess again. We already have 50+ people signed up and I am sure that number will continue to grow.

That means....I need to start running some serious miles over the next 4 weeks. The race is at the beginning of June and right now I am slugging through 3 miles, once per week. Before I started the onslaught of chemo I ran in the Big House Big Heart 10K with a bunch of friends and we managed to push strollers the whole way and finish right around 50 minutes.

My goal this time is to finish. To keep my body moving forward the whole time, without walking. If over 50 people are willing to join the momentum we are building to dominate MM for good, I can find a way to get through this race! If you want to join, it's not too late (instructions here).

Time to go for a run. -Phil

Myeloma Mondays #41: Jeff from Salisbury, NC

Where were you born and raised?

• Born: Stuttgart, Germany (US Army); Moved to Salisbury, NC when I was 9 months old

Where do you currently live?

• Salisbury, NC

When were you diagnosed and how old were you?

• 11/10/2009 - age 42, IGG Kappa

Did you know what MM was prior to diagnosis?

• No, I had never heard of it.

Is there anyone else your in family with MM?

• No.

What led to your diagnosis?

• Extreme pain in my back/sacrum. Turns out I had a compression fracture of the T-12 and 4 tumors in my sacral area; along with tumors in both my humeri and fibula and lesions on most of the flat bones in my body.

How many times were you referred before actually being diagnosed?

• 3

Where have you received treatment?

• Wake Forest University Baptist Medical Center's Cancer Care Center

Explain your treatment history:

• 11/2009 - started first of 10 radiation treatments to the tumor in my left humerus
• 12/2009 - started first of 35 radiation treatments to the 4 tumors in my sacrum
• 12/2009 - started first of 4 cycles of Velcade-Doxil-Dexamethasone
• 2/2010 - received melphalan in preparation for stem cell harvest
• 4/2010 - autologous stem cell transplant
• 7/2010 - vertebraplasty for T-12 compression fracture
• 7/2010 - tried maintenance Revlimid 10 mg (failed - neutropenic)
• 8/2010 - radiation to stubborn tumor at T-10 (10 treatments)
• 8/2010 - 12/2010 - off and on the maintenance Revlimid 5 - 10mg with poor results
• 2/2011 - finally able to stabilize on 5mg of Revlimid
• 3/2011 - increased Revlimid to 10mg (and side-effects begin) failed again
• 5/2011 - re-started Revlimid 5mg dosage

Why did you or your doctor choose a specific treatment?

• I requested to be treated aggressively. I was "young" and in great shape before this took me down. I thought I would be up and running again in no time.

What has been the side effects of the different treatments?

• With the VDD/radiation treatment, the biggest side effect was fatigue. I also had styes on both eyes that my hemalogist-oncologist related to the velcade.
• The chemo put me into a post-menopausal state, which has remained.
• Once I had the melphalan, nausea was the worse followed closely by the loss of all my tastebuds.
• Now with the Revlimid, the fatigue is back.
• I continue to have back pain and spot tenderness at the sites where the tumors were located.

What has been the hardest thing about your MM journey?

• Accepting that I cannot do the things I loved to do before --- rafting the Gauley; hard-impact exercises; hardscaping my lawn; walking my big dog, Joe. Accepting that I may not be able to work like I worked before. I have had a hard time embracing "new normals."
• Fear of relapse has been pretty constant. I really wish they would re-do those statistics!

What are the top lessons learned that you would want a newly diagnosed MM patient to know about?

• Stay strong in spirit...you will get through the treatment.
• It's ok to lean on others for a while.
• Seek someone outside your inner circle that you can talk to...a counselor, spiritual leader, etc. Someone you can really vent to without having to worry about worrying them.

How have you been able to stay positive and encouraged in your MM journey?

• I am one of the lucky ones to have a supportive family - parents, sisters, husband, son - who have walked this whole journey with me. I also have great friends and neighbors who have been there for me and Jeff, too.
• My dogs, Gus and Joe, were wonderful companions. We started calling Joe, Dr. Joe, because he was constantly by my side when I was at my sickest. His 88-pound body actually was very healing. It was like a full-body compression heating pad.

After being diagnosed... What perspective was changed the most?

• Priorities. Prior to diagnosis, I was a workaholic. I worked 10 - 12 hour days in a stress-filled job, and loved it! Now, I would rather spend my time with my friends and family...spend time in nature...spend time with my dogs. I've decided to just be good at work and great at wellness for the rest of my life.

Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?

• Yes. Prior to going into hospital administration, I was a horticulture therapist. I handled a lot of pesticides, fungicides, herbicides, and fertilizers.
• Immediately prior to my birth, my father was in contact with Agent Orange in Vietnam.

What MM sites or blogs had you found good information from after diagnosis?

• Myeloma Beacon
• MMRF
• Crazy Sexy Cancer (Kris Carr) - not a MM site, but a different way of dealing with having an incurable cancer

M Spike Remains 0.1

After several months off of maintenance recent labs show everything to be unchanged. My M-Spike remains at 0.1 and my other numbers look solid. The real good news is that the neuropathy I was feeling in January, has gotten much better. I am sure 14 months of intense treatment just caught up with me, so the little break was probably needed and definitely enjoyed.

I have been slow to document how things have been going, mainly because with the reduction of cancer treatment, life has picked up. A third kid in the mix takes away from much of the free time I experienced in the past. I find myself cooking pancakes "with syrup mistakes" in the morning for Ocean and helping him get ready for school and the day ending with a hour routine to get the kids in bed. By 8:00pm I am pretty spent and Cassie and I use this time to watch a movie or read together.

All in all we are returning to our new normal. I am still very passionate about putting an end to Multiple Myeloma. I have given several talks over the last few months to help build Multiple Myeloma awareness and encourage people to push through their own life struggles. That has been very rewarding.

Lastly, we celebrated back to back birthdays this past week. First, our precious gem, Ruby, turned 1!!! She continues to smile in delight and shower her love and joy on anyone willing to receive. Following her birthday we were blessed with the birth of another nephew. His name is Eli Philip and he already has the "Hail" and "Go Blue" fist pump down and he is not even a week old.



I hope everyone continues to dominate and if you are interested, let me know how you are doing by leaving a comment!