Monday, May 9, 2011

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 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


Sandy said...

The author of "Deludia," an MM warrior, was also directly involved with Agent Orange and may have the same kind of MM that Jeff has... although there is clearly a link between chemicals and MM, are there any studies for parental use of deadly chemicals and their offspring's manifesting cancer?

You do great work in providing this information, Phil, and encouraging all of us to dominate MM and cancer overall. Thank you for your efforts!

Linda said...

Wow, another young person affected by MM and one of the only other ones we have read about with sacral tumors/ lesions like Big EZ. Praying the right dose of Revlimid has been established and that the road gets easier from here with a return to living life fully and with renewed energy!

Joanne Valdez said...

I am in the same shoes you are. I am on 25mg of Revlimid and thank God have had no side effects. I do have alot of fatigue and sore spots and can not be as active as I was either. Not from lack of trying because I still push myself. I am also premenopausal but started again with the menstrual cycles. Dr. said they would come back. I first had it in my c4 spines then developed thyroid cancer and lucky for me the myeloma came back in 2 spots in my spine my S2 and L2. My lab and Mri's have all been great and the oncologist said that come sept. on my year anniversary of starting Revlimid I will be taken off. So my Warrior friend, keep the faith and fight like there is no tomorrow. God Bless you!

Preferred Customer/ Janice said...

I feel for you all, I am a MM survivor, and all your stories resonate. I urge you all to look at natural things to improve your chances. Mine were zero and here I am 7 years later..I use natural healing along with some limited radiation.
If you want to know more reply here but at least check out how much you can be helped.

Sybil said...

Both of my parents developed myeloma--my father in his sixties and my mother at age 79. We lived near a plant that manufactured insecticides. I get screened yearly. There really needs to be more focus on chemically induced myeloma.Other than agent orange, you rarely hear specifically which chemicals have been clearly linked to myeloma. Obviously, more research dollars need to be dedicated in that direction. Sybil

Gina said...

Thanks for your comments. It's actually "Gina From Salisbury, NC" not "Jeff." Jeff is my beloved husband.
I do wish there was more research on the causative factors of MM, so we would know how to avoid it and possibly the key to curing it.
I have been fiddling with the idea of diet changes. I just don't think I have the willpower to go totally vegetarian.
Hope you all continue to do well!
Thanks, Phil! I'm pulling for you in the 10K run! You're an inspiration!