Sioux Center, IA
1938 / Class of '88 / Type: IgA / Chemotherapy & Aredia / Remission / Died: 1-4-2011
I was born in Chicago in May, 1938, where I lived for the first ten years of my life. We then moved to Michigan. We always lived in the city. As a child I had many upper respiratory infections and ear infections. My dad was a heavy smoker. My mother used a lot of insecticides in and around the house--mostly DDT and chlordane--but she was very meticulous about washing vegetables from the garden.
I was married at age 19 and we moved to Iowa, where we have lived ever since. We have lived in small towns. We had five children. In my early thirties, I had a back problem. It was diagnosed as a herniated disc and a disintegrated disc. This caused problems for about five years and has not been much of a problem since that time. I had my gall bladder removed in 1971. After our last child was born, in 1973, I had a hysterectomy because of fibroids in the uterus. I developed a stomach ulcer during my last pregnancy and continued to have stomach problems for a number of years after that.
In 1988, I began to notice that I was very tired all the time and I developed a distaste for certain foods, especially meat. A blood test showed low thyroid, so I began taking Synthroid. It didn't seem to help and my tiredness increased. My local doctor, an elderly general practitioner, diagnosed my problem by way of a blood test, as Multiple Myeloma and referred me to an internist, who confirmed the diagnosis and referred me to an oncologist. Blood and urine tests were given and I had bone x-rays and a bone marrow biopsy. The results showed by IgA level to be over 4500 and the plasma cells in the bone marrow were 65%.
I was put on Alkeran and Prednisone for a year. I tolerated it quite well but the extreme fatigue did not go away. After a year of treatment, another bone marrow biopsy showed plasma cells of 15% and the IgA level was down to 2600. Treatment was discontinued and my condition remained stable for several years.
During the summer of 1995 I developed severe pain in my right hip. An MRI revealed that the hip was badly affected by the Myeloma. I was given 35 radiation treatments, which were followed by 18 months of Cytoxan, BCNU, solu-medrol, Aredia. I also took allopurinol during this time and continued taking Synthroid. In March, 1997 a bone marrow biopsy showed the plasma cells were down to 7% so the treatment was discontinued. The hip pain was greatly reduced but still present. I continued to receive Aredia every 4 weeks and also continued the allopurinol.
A recent bone marrow biopsy showed that the plasma cells have risen to 13% but the oncologist does not feel that I need more treatment at this time. The IgA count is now at 1600 but the doctors do not feel blood or urine tests are very reliable for me anymore, because of the length of time I've had the disease.
I have been overweight most of my adult life. I've done a lot of dieting but have never taken any diet drugs. I was as much as 75 lbs. overweight but during my last round of chemo and since then, I've lost about 40 lbs. without trying. The Aredia, which I continue to receive every 4 weeks, leaves me nauseated and with a lot of pain. It gets better after about 2 weeks but never quite goes away.
There is a history of cancer in my mother's family. Some members of her family have had breast cancer, stomach cancer, brain tumor, melanoma, and my mother herself died of bone cancer.
My husband will be retiring soon and we are looking forward to visiting our children and grandchildren in Wisconsin and Florida. My main problem these days is fatigue but that does not matter with traveling. I feel very fortunate to have survived this disease for almost ten years. That certainly was not the prognosis at the time I was diagnosed with Multiple Myeloma.
September 2000: Since July, 1998, things have been relatively stable
with me. I was receiving Aredia every 4 weeks until March, 2000. We made
the decision to stop the Aredia at that time because I was not feeling well and
we wondered if it could be due to the Aredia. However, I don't feel any better
now that I'm not getting Aredia, so the decision will have to be made as to
whether or not to start it again. My IgA count stayed around 1600 during the
time from 1998 - early 2000. Since I stopped getting Aredia, the count has gone
down to 1160. It has never been this low! All other lab tests are within
My main problems right now are fatigue, nausea, and extreme pain in the right
hip. I had radiation on that hip in 1995. After seeing an orthopedic doctor
recently, he recommends a hip replacement, but isn't sure about the results
because of the Myeloma. So this is a decision we will have to make in the near
future. The pain is becoming unbearable and makes it almost impossible for me to
function. We're trying new pain medications and perhaps they will give
some relief without the usual grogginess.
All in all, my life has been very good. I've had Myeloma for almost twelve years. My husband retired two years ago and we've made many trips to visit children and grandchildren in Wisconsin and Florida. We are very thankful for the quality of life I have been able to enjoy, in spite of having Multiple Myeloma.
December, 2005: Amazingly, I continue to do quite well. I had hip replacement surgery in 2002 and the results are wonderful. I have no more hip pain.
Presently the only treatment I am getting is a monthly infusion of zometa. My IgA count stays just below 1000. I have not had a bone marrow test in the last few years.
My energy level continues to be low, although blood tests show all counts to be normal. I also deal with quite a bit of nausea, for which no cause can be found.
I continue to take synthroid and vasotec daily. My oncologist also has me take allopurinal every day. I have been doing this for years. He feels it helps protect the kidneys and I have not had any kidney problems in all the years I've had MM.
I feel very fortunate to have survived for seventeen years from the time I was diagnosed with Multiple Myeloma. My husband and I are able to do some traveling to visit family and friends.
January, 2009: It's been several years since I've updated my Survivor Story so I think it's about time to do so once again.
In January, 2006, my husband and I were involved in an automobile accident. I had 3 fractured vertebrae and had to remain on complete bed rest for 8 weeks. I was not even allowed to sit up. Needless to say, this was a very difficult time for me. The vertebrae have healed as much as they're going to and I have lost most of the sight in my left eye, due to damage to the optic nerve.
In September, 2007, I had my other hip replaced. This surgery also went very well.
Presently I am not receiving any treatment for myeloma. My last IgA count was 680, which is great. My hemoglobin is low but I am taking an iron supplement for that. My oncologist is amazed at how well I continue to do. He has no explanation for it. At my last checkup, which was earlier this month, he said I don't have to see him again for 6 months. This is the longest I've gone between appointments in 20 years.
April, 2010: I still have myeloma but it is stable. It has not grown in years. However, last summer, June, 2009, I was diagnosed with stage 4 colon cancer. I had surgery and then started chemotherapy. After 7 months it was determined by a PET scan that the chemo was not doing anything. I have just started a new chemo treatment. We are hoping this will work.
Perhaps now I belong on a colon cancer list rather than Multiple Myeloma.
February, 2011 (By her husband, Abe): Helen died on January 4, 2011, but I wish to encourage all who have multiple myeloma by saying, that she lived more than 22 years with the disease and it was not MM which contributed to her death, it was colon cancer. Her fight with MM was for her an uncomplaining battle and caused her fewer problems in her last 10 years than in the first 12. God's blessings to all of you.
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