Third stage Lyme and Crohns means that I see a doctor on a regular basis. In 2008 I started some new symptoms- tired, bone pain,sweats. I just kept after the Dr to pursue a third diagnosis. He did after his father was diagnosed with multiple myeloma. He learned that this is not a hopeless death sentence, but a treatable disease. I am doing very well with treatment. The cost of care is staggering.
– Karen
Suffering from back problems for years, I never dreamed that at the age of 42 I would be diagnosed with cancer. I was pretty healthy, though had become used to the fatigue that accompanies anemia. My back problems were not muscular but a vertebra that was fractured and collapsing. I figured that if I didn’t present with leukemia symptoms like my father, who passed away at the age of 45, I was in the clear after having been exposed to radiation in a small town in Colorado at the age of 4. Nope! My cells took on a different mutation and I had probably been living with MM for years while the tumors were eating away at my spine and other areas. With a grateful heart for a family member who is a doctor and who found a recommendation for a wonderful oncologist, I was started on an induction therapy of Velcade, Thalidomide, and Dex. I also went through two vertebral kyphoplasty surgeries to halfway repair what was left of one vertebra and repair one I broke two weeks after my first surgery. After 4 rounds of VTD, my numbers were awesome, and I have remained in that state and on a maintenance drug of Revlimid ever since (almost 7 years!). I am tested every 3 months to monitor and make sure I do not relapse. I don’t know what the future holds, but I am very thankful for my response thus far!
– Susan
I loved my husband. We lived together for 43 years and yet, at the age of 59, I was still in love with him. He was a handsome, athletic man who would run every morning for 2.5 mile before going to the office. It was hard to believe that such a sportsman would die at the age of 64, only 30 months after being diagnosed with multiple myeloma.
It was on Christmas’ Eve when we found out the dreadful news. Before going to the G.P. doctor we thought it was a cold because he was coughing intensely and was unusually pale. The doctor immediately channeled us to the hematologist who informed us that my husband has multiple myeloma. It was like a shock.
The biopsy of the bone marrow revealed Multiple Myeloma State III, with high level of proteins and Hg around 6-7. At that moment, it crossed through my mind that 6 month before the diagnosis, Mihai had a rash on his skin, big brownish spots on his legs and hands. We thought it was a dermatological problem and went to a private clinic dermatologist. After consultation, he decided Mihai had probably got an infection from our Dalmatian dog whose paws I use to clean in the bathtub. For the doctor, it did not matter when I told him that I disinfect the bathtub each time with good quality detergents. He maintained ” his professional verdict” and even got a bit upset because I dared to challenge him. He gave us some solution and indeed, after a while, the rush was gone.
I am still living with the sorrow that, may be, I should have asked for a second opinion at the time or simply asked for an appointment with a hematologist. ( I would not have made reference to this story if I had not read Sharon F’s story about she waking up one day with a rash on her body. Perhaps there is something to learn if more than one person talks about the same symptoms ).
For me, the next 30 month after my husband’s diagnosis, was the most tormenting in my life. The feeling were mixed up, love, compassion, sorrow and desire to do whatever it takes to help him. There were many time when I felt hopeless. There were times when I told him only parts of the truth and for that I still question myself, have I acted well or wrong. At the time, I was having a very demanding job as a senior manager. For me, the most important thing was to be with my husband for as long as possible but also, to a very high extent, to keep my position. There were times when I knew I was loosing control over my office performance. I will never forget one day when we went to the hospital to have a endoscopy of his lungs – in order to assess the spread of the malignant cells. As soon as we arrived there, I received a call about an office emergency and, against my will, I had to run to the office. After all, keeping my position meant better treatment, better medication – paid by my company medical insurance – access to treatment abroad. How to cope with this, as to be able to meet your medical and financial needs and your own emotions, your vows , your conscience. Then one day, after 30 months of experimenting Velcade, Lenalidomide, Thalidomide and a salvage treatment at the Wilhelmine Spital in Vienna, my husband’s life ended. I was 60 years old and my life was gone along with him.
– Viorica
I had a plasma cytoma removed from my spinal cord in 2001. Several years passed and multiple myeloma was diagnosed. I was given 3 to 5 years to live, and was told it was a stage MM four from a prominent Michigan oncologist. I did go on treatment of Thalidomide and dextamethisone.
Here’s the important point, 8 years later and several opinions and tests later, I’m still here to say, I have a smoldering myeloma which is also known as indolent myeloma. I was originally misdiagnosed! I haven’t had any bone breakage nor symptoms, with the exception of lesions, and have been treatment free. I’m very blessed! I attended a marvelous support group where I learned so much and still do. There are so many types of multiple myeloma and many treatments.
The International Myeloma Foundation is a wonderful source of knowledge and resources.
Get informed, get 2 and even more opinions, and join a support group. Know what tests are available and who the myeloma experts are! I’m considering getting my stem cells harvested for future use. Read other people’s stories and be your own advocate!
– Anna
I was diagnosed with multiple myeloma in March 2012. I started treatment in Richmond at Virginia
Cancer Institute . I have now been under treatment for 3 years. Last September, I had an episode and
ended up going to MD Anderson Cancer Center . I got there on September 30th, 2014 and they
immediately put me in the ER. They kept me overnight in the ER and then the next day put my in the
Lymphoma /Myeloma Cancer Center. I was treated aggressively for 3 weeks and then moved to a Nursing
home for rehab. I ended up staying in Houston for 4 months. I have now come back to Richmond, VA and
are continuing the treatments here. I am due to go back to Anderson on the 17th of February for a
checkup. Hopefully, we will return home on the 23rd of February. I am doing well now and hopefully
will be a candidate for a stem cell transplant soon. MD Anderson is the best hospital for Cancer and
they are trying to strike Cancer out of our vocabulary. Hopefully, this short version of my story
will help someone else.
– Brenda
Before I was diagnosed with multiple myeloma, I experienced frequent sinus headaches due to recurring
sinus infections. I also had a kidney stone that caused a lot of pain. Had it been caught and
analyzed, I might have been diagnosed sooner, but I passed it without retrieval. What finally got me
diagnosed was when my spine started collapsing. While carrying a canoe on my shoulders, I stepped
into a depression. The additional thrust on my spine caused a 60{662f9154478519430121bf9cce4d6b9f8ccf730187d765d88c6c0fa44a9f95f5} compression fracture of my L2
vertebrae. Still, it was 3 months before lab tests ordered by my orthopedist resulted in my diagnosis
with stage 3 multiple myeloma in 1998.
– Harold A.
Four years ago while ballroom dancing my knee gave out and I went down. An MRI was done and lesions
were found around my knee. A bone marrow biopsy in my knee narrowed it down to Multiple Myeloma. I
did 3 rounds of chemotherapy then harvested my own stem cells and had a stem cell transplant. I
enjoyed 3 years of complete remission till I felt it coming back again. I’m currently on maintenance
chemotherapy and still dancing
– Monica
28 years ago I was told I had Myeloma. I could,not imagine what it was. I had never heard of it. In fact the Doctors were not sure about it either. I had a tumor eat through the 7th vertebrae in my neck. Again how could this happen. I never asked why I just said lets fix this.
Now 28 years later I can tell you that if you are a new Myeloma patient you are so lucky to have the many options I didn’t have. I have pioneered through all the chemo’s, radiation, and 3 transplants. It wasn’t always easy, but in 28 years I have been able to watch science evolve with Myeloma now being recognized as a cancer that is growing.
What I can tell you is to be patient, have a Doctor that is knowledgeable in Myeloma, and never give up. If I can make it through 28 yrs. you can too.
God bless each and everyone, and give us strength.
– Carole
I awoke one beautiful day I late April 2012 with a rash. It was like prickly heat rash everywhere. I tried to get in to see my primary care giver but she was booked. So no wanting to mess around with it I went to a local emergency care clinic they never really said what they thought the rash was but ran CBC. When the doc returned to the room she asked me how I felt other then the rash I told her I felt fine, why?
She said you are so anemic you may want to consider being transfused and to get with my doc to run more tests which I did about three days later and took off for the ocean with my daughter and grandson . We were gone three days and on the way home in the car I get a phone call from my doc she said Mrs. Filicko you have multiple myeloma and you are going to need some chemotherapy. I can recommend someone if you like. Wow! What! My god! Etc etc. So this was the beginning of my journey.
After seeing one hemo onocoligist I decided to go to CTC. They were great and ran every conceivable test but ultimately I decided on treatment closer to home. I started on velcade subq and dex weekly then the doc said we need to address this spot on your lung so they did a biopsy and sure enough it was another cancer unrelated to the myeloma.
In the meantime I had developed a fib which they thought was made worse by the chemo. So in order to address the lung I had to have a pacemaker before my lung surgery which I had in October of 2012. They removed the upper left lobe of my lung where they were happy to inform me that it was insitu contained and that they had gotten it all unfortunately they could not get the breathing tubes in because of my wind pipe would not accommodate the larger tubes in order to do a less invasive procedure which would have left much less of a scar. Also my trachea swelled around the tube so I was kept unconscious for 2 days so when the took the tube out there was some concern if I would regain my voice or not. I did after about a week of soft foods and liquids.
So now back to myeloma treatment. My numbers by end of December were great and I was in VG remission so we started talking about a bone marrow transplant which gave me the best hope for long term survival so we started with the shots in the belly in February 2013 harvested my cells in March and did the transplant April 3 2013. When I went in the hospital I was feeling really great lots of energy positive attitude etc. I walked and walked around the ward until I got the dreaded c dif and was confined to my room for about 20 days .
They watch your blood count every day and mine was just not going up so I had more stem cells and then the numbers flew up an I was released April 28 the experience was nothing like I thought it would be I didn’t feel sick or have hardly any side effects so home I went to a sparkling clean house. Thanks to my family and a new appreciation for the little things, after all it’s not everyday your mortality comes around and slaps you down. So the results of the transplant in July 2013 were and continue to stringent complete remission.
It is now a little over a year. I am on revlimid 10 daily. Not to many side effects other than some diarrhea. Also zometa infusion once a month for a year. If I could tell people newly diagnose try not to panic stay off the internet except for reliable sources like this site or the IMF website. Breath!
— Sharon
I went for a routine physical exam and my doctor told me that my blood work showed I was anemic. She did some additional tests and then referred me to a hematologist/oncologist. At this point, I still wasn’t worried. I thought there must be some benign explanation. So, off I went to the oncologist who did more tests.
All I can say is that I was shocked and horrified to discover that I had a blood cancer called multiple myeloma, for which there is no cure, at just age 57. I had faced cancer once before, having had breast cancer 8 years before. But that was easy to deal with compared to this. My breast cancer was found early and the prospects for my long term survival were fantastic.
The first few months of living with MM were very tough for me. I was depressed and scared about the survival statistics, and in my view, the prospect of being in a lot of pain and in general losing my life as I knew it. I would spend time with our grandkids and think about never seeing them grow up. I would travel and wonder if it was my last trip. At the same time I had these feelings, I was trying to be positive, though that was difficult to do. Learning yoga and practicing meditation and guided imagery helped me cope and focus on inner healing. And, little did I know that I would be a survivor for many years and still going strong.
Here I am, 10 ½ years after my myeloma diagnosis, and I have a normal and wonderfully full life. I have hardly ever looked or felt like I had any problem. I have been lucky that my disease has always been just in the bone marrow and I have never had physical problems from it (other than some minor neuropathy from treatment drugs). I was on oral treatments for 8 years, and was able to play with my grandchildren (even welcome a new one to the world), play golf, and travel the world.
Five years ago, my husband and I decided to buy a home in Florida and now spend winters there and summers in WV. We now have a fantastic life in both places.
The only blip in my life was a decision to have an autologous stem cell transplant in 2012 because other treatments stopped working and my disease progressed for the third time. I had a very easy time with transplant and was back to walking a mile and a half a day and playing golf in just two months. Hair took longer to come back but that was a small price!
I have been overjoyed to see two of our grandkids graduate from high school and college, and another three will graduate high school this year. I promised myself when I was diagnosed that I would live to see all of them graduate from college and get married some day.
Since my health is so good now, we are going to China this year, and I am very excited about this trip. Now, I realize how much I have going for me, and have a positive outlook every day. Most important of all I have a wonderful, loving husband who talks about all of the years we are going to have together doing things we enjoy. Strong Support from family and friends, as well as my great medical team, have helped me immensely too.
I know I have been lucky in terms of the type of myeloma I have and that it has had such little impact on my life. However, I really believe that keeping positive throughout has helped so much. I even do visualization every day of ridding my body of myeloma cells and living a healthy and joyful life. So, I expect to fulfill my doctor’s predication that I will live to be an old lady (which he defined as in my 80s)!
– Michele