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 oldWhere do you currently live? Salisbury, NCWhen were you diagnosed and how old were you?11/10/2009 – age 42, IGG KappaDid 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? 3Where have you received treatment? Wake Forest University Baptist Medical Center’s Cancer Care CenterExplain your treatment history:
11/2009 – started first of 10 radiation treatments to the tumor in my left humerus12/2009 – started first of 35 radiation treatments to the 4 tumors in my sacrum12/2009 – started first of 4 cycles of Velcade-Doxil-Dexamethasone2/2010 – received melphalan in preparation for stem cell harvest4/2010 – autologous stem cell transplant7/2010 – vertebraplasty for T-12 compression fracture7/2010 – 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 results2/2011 – finally able to stabilize on 5mg of Revlimid3/2011 – increased Revlimid to 10mg (and side-effects begin) failed again5/2011 – re-started Revlimid 5mg dosageWhy 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 BeaconMMRFCrazy Sexy Cancer (Kris Carr) – not a MM site, but a different way of dealing with having an incurable cancer