Tag: Myeloma Stories

I was diagnosed with multiple myeloma the week of Thanksgiving 2015. Stage 2. The doctors say no cure. Lol I’ve heard those words before.

For those who know my story, and have witnessed the move of God in my life, knew that God would show me Mercy and Favor.

I lost my best friend to suicide? God was there.

In 2000 I was diagnosed with an eye disease,  doctor said there was no cure. Declared legally blind for years, then lost my sight completely for an entire year.  God was there. I had cornea transplants in both eyes? I am able to see today because God was there.

I lost my spouse in 2004 after being married for only 1 month? God was there. I remembered being asked by a coworker at that time, how can I love a God like that? My answer was, how can I not love a God like that? No matter what we go through, God is there.

Multiple Myeloma

When I was diagnosed with multiple myeloma I immediately felt lost. Different from anything else that I had experienced. Then I remembered reading a quote. Cancer is a word not a sentence. Then it was time to fight, and my thoughts were when God get ready to move this mountain he will. All I’m asking is that he give me the strength to climb.

Chemo, radiation, side effects, pain, fatigue, sleepless nights. Physically exhausted yet spiritually strong.

I made a decision to have bone marrow transplant in August 2016.  I also participated in a clinical trial which was done the day after transplant. It was explained that you are randomly selected for the trial. And yes I was selected, I call it God’s favor.

This was a very difficult time. Going through that gave a new meaning to the word sick. I had so many blood transfusion that I lost count. Since the transplant and the trial, I am so much better. I’m 6 months out and now on maintenance. I take Revlimid 5mg. Start my immunizations next week. I’ve had 3 biopsys since the transplant, and consults have all been positive, where there were no signs of myeloma. I still get very tired after 2-3 hours. But everyday that I survive is a blessing and a victory. So if you ever feel that you’ve come to the end of your rope. Remember tie a knot and hang on because God is there.

-Cynthia

Hi, my name is David. At 51 years old in 2006 I was diagnosed with Kappa light chain multiple myeloma.

I have had two autologous transplants and one allogenic transplant. The cancer continues to come back.

I currently started a new drug called Darzalex. We do not yet know how it is doing. We have learned to trust God no matter what!

We have a good Oncologist who is conservative in her strategy to fight this disease. We listen to my body and have learned to take a break when you need to. We keep active walking everyday. I do yard work and love to cook sometimes. My wife takes very good care of me keeping me on track with all the drugs needed. We volunteer at our church helping poor needy children around the world. We believe it is important to have a passion with a purpose in life to help others in need. My encouraging words is to never give up. Keep fighting with everything you got! Our goal is for me to get better so we can celebrate our 40 year wedding anniversary with a cruise to Alaska! God Bless.

— David

My story is a little different. I went to the grocery store on a Sunday evening to pick up some milk. They were emptying the coolers and it was very cold and I had a huge sneeze. I went home and told my husband I sneezed so hard I think I pulled a muscle. I am an RN and I went to work next day and told my boss my situation. He told me to take it easy. The next day I c/o of pain when I laid down. He suggested I get MRI which he ordered. My report showed compression FX with hemangioma. Further readings told me a compression FX with a hemangioma you should be tested for Multiple Myeloma. This was the beginning of my disease process. All my labs were ok but a slight change in SPEP. Bone marrow was done which confirmed Multiple Myeloma.

I was started on Tx and radiation to my LT hip that showed severe disease in bone survey. I received 5 treatments and 10 radiation treatments to my Lt hip. Following treatment In Jupiter I went to MD Anderson for evaluation and further treatment recommendation. Stem Cell Transplant was recommended and was done September 28, 2015.

I am presently in remission and was restarted on Revlimid July 2016 as maintenance. The people I have met and the information available for patients and their families has helped tremendously. I look forward to being a part of the new treatments and the cure for Multiple Myeloma! We can never give up !!

In March of 2006 my husband, 56 years old, and I learned of his multiple myeloma diagnosis after almost year dealing with treatment for what was thought to be a hamstring pull. Although I had researched multiple myeloma on the internet while waiting for the test results, it did not prepare us for what was to follow.

And so the journey began. Two healthy people who rarely visited a doctor to a life immersed in testing, hospitals, doctor offices, and waiting.

The good news was my husband had a very understanding boss, good insurance, and the helpful IMF packet that I requested helped me better understand the disease, treatments, and gave some hope that he may have longer to live than the two to five years given to us initially by the oncologist. The journey has also led us to meet some wonderful people. Wonderful doctors, nurses and hospital staff. Courageous cancer survivors, cancer patients, and compassionate caregivers.

Multiple myeloma has been an unwanted teacher but has taught us how to better live our lives focusing on the present, deepening our spiritual life, and deepening our understanding of what is important in life and for that we are deeply grateful.

Gary is currently on Dex/Velcade following a three year chemo rest as a result of stem cell transplant. The fallout from radiation treatments and mulitple myeloma’s attack on the spine cause daily pain which seem more a battle now than myeloma itself.

I am happy to see the increased awareness which is leading to earlier detection and diagnosis so multiple myeloma patients now may be able to forego the handicapping bone damage before beginning treatment.

— Amy D.
    New Bern, NC

Lucky me, finally diagnosed with a “hard to diagnose” cancer, Multiple Myeloma.

My story begins finding me in what can only be described as utter desperation. Who knows how long I was really sick?! My back hurt and my ribs were killing me for what felt like forever. As I look back on it, it was at least a year and a half. In that time, I tried everything, and I mean everything. Massage, yoga, physical therapy, chiropractic, acupuncture, pain clinics and every vitamin and magic potion imaginable.

At one point, I even ended up in the emergency room. I couldn’t move, simply couldn’t get out of bed. I had chest x-rays numerous times because I was constantly sick and coughing. On my trip to the emergency room, it was strongly recommended that I see a cardiologist. I had every test under the sun, stress tests, ultra sounds and enough ekg’s to make my head spin. All that, and still no diagnosis. I asked her six different times, “do you think I could have some kind of cancer”? I was still coughing.

Out of shear frustration, I went to an ENT group and threw myself at their feet thinking that if they could at least clear up this cough, I wouldn’t want to jump off of a bridge every time that I coughed. They gave me so many antibiotics that it caused me to get a urinary tract infection. My break-through came here…. My urologist was the first doctor in this odyssey that knew me. He knew that I was in grave condition and that something was really wrong with me. He sent me to his own personal doctor. He called him on his cellular phone and asked him to see me immediately. I was there an hour later. Two days later I was having emergency, life saving surgery for pleurisy. It was during this surgery called a plural effusion that lesions on my spine and ribs were clearly evident. It was in the recovery room that I was introduced to a new member of the team…. my oncologist.

There are two things about my story that I would like to share:

1. Go to a doctor that you know and that really knows you. Had I been to anyone in the chain that knew me, perhaps I wouldn’t have presented with stage 3 Multiple Myeloma. Curiously, many, many people present with stage 3… there are only 3 stages with Multiple Myeloma. Rib pain is a classic symptom of Multiple Myeloma.

2. Run, don’t walk to a Multiple Myeloma specialist. Do not risk your treatment and ultimately your life with a cancer generalist. In closing, a new group member in the Multiple Myeloma group that I attend and I were chatting. I mentioned my success at a major center in Houston, Texas where I stayed for 4+ months. Her immediate reaction was that she wouldn’t even consider such a thing as it would be just too “inconvenient”. Folks, there isn’t a thing about Multiple Myeloma that is convenient, sorry. Good luck to us all!

— Matt M.
Miami, FL