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Collette Barkley
04.01.97

1935 / Class of '95 / Type: IgG / Died: 4/97 - extensive bone involvement

Collette grew up in a small town in a farming area in the upper Midwest. Her health history prior to MM showed no disease or allergies as an adult. She had a total hip replacement at age 53 due to osteoarthritis. No other osteoarthritis was present except minor changes in spine consistent with age.

She was 61 at diagnosis, and was treated by a Hematologist-Oncologist and Hematologist-Internist who specialized in Myeloma & Leukemia. Both were in a large city multi-practice medical center.

In her words:

"My diagnosis of multiple myeloma was made in May 1995 as the result of a fractured right humerus, sustained while dressing. Looking back over the previous year, I can almost pinpoint the time that the disease became active. After over 20 years of working without a single day lost from illness of any kind, I had pneumonia twice, in June 1994 and again in July 1994. This certainly signaled a change in my immune system.

"After July 1994 I was under increasing stress at work and in October sustained, what we then thought were pulled chest muscles, from moving heavy boxes. Stress at work became more and more intense and I incurred pain in my right hip, the hip where I had previously had total hip replacement surgery. Hoping that the hip was not going bad, I started using crutches and went to the doctor complaining about intense pain in the hip and some pain in the right arm in February 1995. X-rays were taken of the hip and no pathology was found. Doctor recommended crutches for one month followed by a bone scan if no improvement. He felt the pain in arm was caused by use of crutches.

"In early April I returned to the orthopedic doctor with continuing hip and arm pain. After x-rays showed no pathology in hip, he recommended a bone scan. Immediately afterward, I was fired from my job because I could no longer travel 6 days per week while on crutches. Of course, I had no more health or disability insurance. I delayed the bone scan for several weeks while I filed for unemployment insurance.

"On April 30 my arm fractured while I was dressing. Visiting the doctor on April 30, X-rays of the arm showed plasmacytoma; the upper 1/3 of the humerus had shattered and the bone appeared to be totally involved in tumor. Subsequent x-rays of chest and breast were done to try to locate a primary lesion. I also had a bone (iridium) scan at that time which showed activity in the broken arm and also in the sacrum, at T-9, and in the ribs. I was hospitalized and the arm was reconstructed using steel rods and "epoxy". Marrow tests provided the diagnosis of myeloma. While hospitalized, I was given an x-ray bone survey which showed a compression fracture of T-9 and confirmed tumors and/or fractures in the sites identified by the bone scan. (While in the hospital undergoing surgery, I was notified my unemployment claim had been disapproved because the company reported that I had "quit my job to work at home.) Needless to say, I was too ill to contest this decision until well past the appeal date. It no longer mattered, anyway, as I was certainly not going to be well enough to work for some time.

"I was discharged on day 3 from the hospital and that day began my first course of M/P (Melphalan and Prednisone) chemo. Dosage was 20mg Melphalan and 200mg Prednisone for 4 days, then 10mg Prednisone for 4 days, then none until 4 weeks from the start. I was told that radiation would be done to the arm when the surgery had healed.

"At this point I was discharged from the hospital. I had been told my diagnosis, and given a very brief description of the disease including the information that "there was no cure, but that with treatment it could be controlled for a period of time." I did not have any of my blood work results and did not even think to ask for them. I was very ill and in great pain. I did not know what the chemo and/or pain medications would do to my body, and certainly did not have any understanding of what the myeloma would do to my body.

"Therefore the following month before my doctor visit was literally living hell. I had great pain in the arm, which I understood, considering the amount of digging the doctor had had to do to get out all the tiny pieces of bone from everywhere. Additionally, I was very weak, dizzy, and had vision problems. I attempted to build up strength by trying to increase physical activity very gradually, but any activity made me dizzy and my heart pounded so hard I would just give up. After a month spent in my recliner, at least my hip quit hurting!

"After a June doctor visit, when I nearly passed out in the clinic waiting room, the doctor told me that my red blood count was so low that that was what was wrong. He reduced the chemo dosage and I went to the hospital and was given 2 units of packed red blood cells. He also gave me a little understanding of the affect of the myeloma and chemo on my bone marrow and red blood count. I was still not well enough to do any research on my own, and in too much pain to use my computer. I could not see well enough to read and what I could read, I could not comprehend. This situation continued with little improvement until September when I received 3 more units of blood and my arm began to be functional. Now my education could begin!

"My inquiries regarding bone marrow transplant and/or stem cell transplant were met with a very firm opinion from my oncologist that my age was against it and, since I only have half-siblings, a donor transplant would be difficult and far to dangerous to risk for the apparent hope of cure. After continuing my education along these lines, I was inclined to agree with him and have put the idea of a transplant far in the back of my mind.

"I am encouraged to hear from several reliable sources that some patients live for as long as 20 years on a regime of M/P and so I have no reason to believe that I can't do that too.

"During July and early August I received a total of 1200 rads of radiation therapy to the right arm. There were no side effects from the radiation. Pain continued to be severe until about 3 weeks after the radiation was completed and then it very gradually diminished.

"By November it was clear that the Melphalan chemotherapy was too hard on my bone marrow. The dosage had been continuously adjusted downward and the interval extended, but my marrow would simply not recover from the treatment, although the M-spike responded well. It was decided to switch to IV Cytoxan given once every 4 weeks with the Prednisone continued at 200mg for 4 days, then 10mg for 4 days as a taper, then none. In addition, the Prednisone caused severe mood swings, insomnia, increased appetite, and general discomfort. The side effects of Prednisone are well known and generally experienced, I believe, and so I just try to live with them. (But they certainly contributed to the general agony of the first few months when I didn't understand anything about what was going on in my body.) I have had no side affects from the Cytoxan other than a slight dropping of blood counts during the 10 days following treatment, after which they rise again to acceptable levels. I have not lost hair and have no nausea.

"After reading material from the International Myeloma Foundation, the FDA, and other sources, I became increasingly worried about the state of my bones. The scan and x-rays had shown a lot of bone involvement and I was concerned about further fractures, especially in my back, which could have very severe consequences. I involved my internist-endocrinologist as well as the orthopedist and oncologist in consideration of what could be done to protect my skeleton from further damage. It was agreed to start me on hormone replacement therapy and follow that the subsequent month with Fosamax. Since my blood calcium level was normal, they did not feel treatment with Aredia was a good choice for me at that time.

"From the beginning I had, with the Oncologist's approval, been taking a multi-vitamin supplement, 1500 units of Vitamin C, 1000 mg of Calcium Citrate with Vitamin D, and using Echinacea Tea as part of my 3 liters of liquid intake per day.) I have no signs of kidney involvement.

"In November of 1995 I began to experience pain in my left hip (not the one where I had had previous problems). I feared that I had osteoarthritis now in that hip and that the Prednisone might have aggravated it to the point where I would need to consider a hip replacement. Not a happy thought! Back to crutches and, after Christmas, back to the orthopedist for x-rays. No pathology in the hip was the good news. The bad news was that the femur, from below the ball joint almost to the knee appeared to have "myeloma involvement." It did not have the pumice like appearance of the plasmacytoma, but instead showed some thinning of the outer layer of the bone and scalloping all down the shaft of the bone. Since the oncologist had told me that "if we are getting the myeloma under control, we don't have to worry about the bones" I was dismayed and discouraged. The orthopedist wanted immediately to stabilize the bone by inserting steel rods. I persuaded him to allow me to be extra careful, using crutches, and see if the medications plus radiation would stop the damage and allow bone regrowth to prevent the need for surgery. I received a total of 1200 rads to the right femur immediately. The x-rays taken the previous May in the hospital were reviewed and it was determined that the "anomaly" had been present but not reported at that time. WAS I MAD!

"I had increased pain during the radiation therapy and for about two weeks after. Then most of the bone pain ceased abruptly. Mild pain continues in the joint; some of which is bone pain, some of which is muscle pain. I continue on crutches in July 1996. The orthopedist says that the good news is that there is no progression of disease in the femur, but that there is no sign of increased bone density as yet. He feels the intense pain which I had previously was due to a stress fracture which was not visible on x-ray and that it had healed. (Surely a good sign!) In September I may need to make the decision whether to have the surgery to stabilize the bone with steel rods. I attempt to place approximately 70% weight on the affected leg when using crutches to encourage bone regrowth and use a wheelchair when out in public for protection against slips, bumps or loss of balance which might precipitate accidental torque or stress on the leg.

"My M-spike continues to drop slowly. I am impatient with the speed, but as long as it continues to drop, I suppose that should satisfy me. I lack a great deal of energy, although I believe some of the fatigue is caused by the use of crutches and continuing hip pain. I have residual pain in the right arm which I will always have because of scar tissue, but have almost full function and almost full strength. The oncologist indicates he plans to increase the interval between chemo treatments to 6 weeks in the hope that it will help my energy level.

"During this period I have had few immune system problems. Early in the disease, about June of 1995, I caught a severe cold with increased fever. It was treated with antibiotics and responded well. In June of 1996 I caught bronchitis, no sign of pneumonia, was treated with antibiotic to which I had a violent gastro-intestinal reaction and spent several weeks recovering.

"I have, from the beginning, been drinking bottled distilled water. I rarely eat food not prepared at home and when I do I try to avoid raw foods or foods that have to be kept warm or cold. We have tried to be diligent about hand washing and use extra care in food preparation, taking more than normal precautions in washing produce and cooking all meats very well done. When eating away from home I try to eat foods cooked at high heat and cooked to order. I avoid restaurant ice tea. I have made a strong effort to avoid crowds, especially in winter, and especially where there are children present. I carry antibiotic wipes in my purse and use them before handling food and after using public rest rooms (which I do ONLY when driven by necessity). My family has all had the education and common sense to avoid me at any sign of illness no matter what the inconvenience. Without their loving support I would be an emotional wreck."


April 7, 1997 - from Collette's daughter - I very, very sorry to say that my Mother left us yesterday. She has been fighting like hell against all odds and one blow after another. Friday she gathered enough strength to speak with us for a few moments and say goodbye and ask us to forgive her but it was just too much pain, she could take no more, the suffering was too great, and the odds insurmountable. She wanted so much to recover and do more work with this group which meant so much to her. I know she will be missed there as well as here. She is a great and strong spirit and the world we will all be a little more for having had her and a little less for having lost her. I can only hope that she will be there to meet us when we go. Thank you all for being such a vital part of her last years, for making her feel vital and useful despite her struggle and pain, you were a bright spot in her life. I am hoping that she is in a happy place with her best kitty in her arms - waiting for us.

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