Myeloma Mondays #47: Mark from West Orange, NJ (dx at age 19!)
Hi, my name is Mark Barnas and I am almost 7 year survivor of Multiple Myeloma from West Orange, NJ. Heres my story!
Where were you born and raised?
Born and raised in West Orange, New Jersey
Where do you currently live?
West Orange, New Jersey
When were you diagnosed and how old were you?
Official Date of diagnosis was January 25, 2007 ( 19 years old!! )
Did you know what MM was prior to diagnosis?
Not a clue! Never had heard of it!
Is there anyone else your in family with MM?
No one in my family has ever had nor had heard of Multiple Myeloma before
What led to your diagnosis?
Plasmacytoma found by my girlfriend Gina on my right second rib.
How many times were you referred before actually being diagnosed?
Once. Originally my thoracic surgeon put it at 70-30% of it being a benign tumor based on CAT scan results. However, doctor advised to have tumor removed and biopsied during surgery. My first out of 3 surgeries within 7 months during my sophomore year of college was the Rib Resection (Jan '07). Tumor was biopsied on the spot and was determined to be Multiple Myeloma. Woke up in intensive care to doctor advising me that it was MM. Second surgery was a Chest Wall Reconstruction (Mar '07), alloderm mesh was inserted into void that was created by removing rib (surgery was a complete failure). It was determined after that surgery failed that I would need a 2nd Chest Wall Reconstruction and 3rd surgery overall (Aug '07). Doctor inserted large piece of gore-tex into void and surgery was successful and I regained most use of my right arm due to surgeons ingenuity in not having to cut my Pectoral muscle at all and overall luck. Then oncologist advised me to have 15 radiation treatments to get whatever the thoracic surgeon had missed.
I went over 6 years without any other treatment because my M-spike went from 2 in Jan '07 to about 5.5 in Apr '12 with no CRAB symptoms other than rising Mspike. I had preventative pet scan in Sept '11 and they found a couple lyctic lesions on my hip. I had a BMB in Apr '12 which it came back at 75% myeloma cells and it was then determined that i had to start treatment right away. However with low risk disease no need to do transplant right away.
Where have you received treatment?
St. Barnabas Hospital, Livingston, NJ
St. Vincents Hospital, New York, NY
Mt. Sinai Hospital, New York, NY
Explain your treatment history:
Jan, Mar, Aug '07 - 3 separate surgeries
Aug, 2007: 15 radiation treatments
May 1, 2012: Started RVD
Sept 6, 2012: Completed 6 cycles of RVD (about to be complete remission)
Late Sept, 2012: Stem Cell Harvest Planned for possible Auto-SCT within next couple months or go on Maintenance Revlimid Therapy. BIG DECISIONS COMING SOON!!! ;)
Why did you or your doctor choose a specific treatment?
Dr. Jagannath is a big believer in not going straight for the transplant and that we could use alternative maintenance therapies to lengthen my life and keep the quality of life at a high level. I truly believe that I might be able to to avoid having a transplant within the next couple months from today and could postpone it a few more years but I know eventually I will have to have it and go through it regardless. I am mostly scarred of the unknown since I am so young and there is no set way to treat MM.
What has been the side effects of the different treatments?
Surprisingly, I have had no side effects what so ever with RVD except weight gain (which I actually enjoyed) and lack of sleep from Dex.
What has been the hardest thing about your MM journey?
Being diagnosed at 19 and not having a clue what I was getting myself into. Going to college while all this was going on was no easy feat. One day I was raging with no care in the world and then the next day my whole world was turned upside down. Most of my friends were there to support me and luckily my doctor in NYC was close to my college so I was able to go to school while going to get surgeries and treatment.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
As my dad always said since I was diagnosed "Mark, the sun will always come up tomorrow and you should enjoy every sunrise." "You cannot control the uncontrollable so why try"
How have you been able to stay positive and encouraged in your MM journey?
I truly believe that they will find a cure for our disease soon, The support from my family and friends have allowed me to not focus on the vast ups and downs but on the bright side of living life to the fullest regardless of the ride. I know that we will all live long and prosperous life no matter the length of time here on earth.
After being diagnosed... What perspective was changed the most?
Learning to enjoy EVERY moment and that this disease while it created havoc in my life, has brought me so much closer to my family, friends, and my girlfriend of almost 9 years. She was there for me from the beginning and the entire time since and to this day is there to support me mentally and physically. She is the rock in my life and has climbed mountains during this journey. Her positive outlooks on life along with my families allow me to see beyond the bullsh*t we have to deal with on an almost day to day basis with MM and look at the larger picture. Life is a long journey and we should all enjoy the RIDE! Stay Positive!!!! Do not take anything no matter how small for granted!
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
What MM sites or blogs had you found good information from after diagnosis?