My journey began in September 2011. I was in great shape for a 55 year young female. I started having pain in my right shoulder, thinking it was probably a muscle I pulled while playing golf. I went to see an Orthopedic doctor. He took X-rays and couldn’t find anything so I asked him if he could give me a cortisone shot as I was about to take a trip to Europe the following week. My shoulder felt better and I was able to go on my normal routine until the following month when I started having problems with both my wrists.

I went back to my Ortho and he referred me to a neurosurgeon who told me I had carpal tunnel. I was in so much pain that I had surgery on both wrists two months apart. After surgery it was better but not normal so I went to physical therapy. By that time I started having swallowing issues and it was getting worse everyday, you see not only did I have multiple myeloma but I had amyloidosis which is a byproduct of MM.

A month later in the middle of March 2012 my right leg swelled and I had difficulty walking so my good friend who is a nurse told me to go to the ER. They told me I had a bakers cyst and that it would get better in time. In the meantime, I went to my gastroenterologist about my swallowing. He ordered an endoscopy. He found evidence of amyloid but didn’t bother to call me. I went back to my Ortho, he said he couldn’t help me and there might be something systemic wrong with me and gave me the name of an internist (which I didn’t have, big mistake!).

As soon as I got home I called but the next opening was in three months for new patients. At this point I was so sick I was tired, both legs were swollen and my swallowing was getting worse.

My husband who works for the city got me in to their doctor. He ran tests and found high calcium levels, proteins in my kidneys, etc. They had me check in on my birthday in the ER and that is when the oncologist came in and said you have CANCER MM. What is that, never heard of it. My husband and I were shocked, me how can that be. I don’t fit the profile.

They told me to get my affairs in order that I was not going to make it so I essentially gave up too but my kids, family and friends were not giving up. I was on dialysis and I had a feeding tube. They finally gave me Velcade and I responded immediately my numbers dropped dramatically and my kidneys started getting better…on my way to recovery.

Six months out of the hospital my feeding tube came out and my numbers were still declining. I’m seeing the best oncologist who specializes in MM and Amyloidosis. I am now in stringent complete remission without a stem cell. I still go once a week for Velcade and dexamethasone and no signs of bone lesions.

It’s been two years and my future looks promising. There are so many treatments out there and more on the way and having this website gives me hope, I don’t worry as much as I did in the beginning. I know this sounds odd, but I do feel blessed:) Hang in there my fellow patients.

— Lilliana S.

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