Chicago, IL; email@example.com
1950 / Class of 2001 / Type: IgA / Thal+Dex / Updated: 1/03
I am Barb's husband, Don Schultz (firstname.lastname@example.org). Barb and I have always lived in Chicagoland, the last 16 years about 35 miles SW of downtown Chicago. Barb was born in early 1950. She was diagnosed with Multiple Myeloma-IgA in June of 2001. Barb enjoyed good health having had no allergies or chronic illnesses. We have 5 children, all born naturally, 4 of them at home. About 4 years ago she began to have some knee problems. She decided to have a high tibial osteotomy. This realigned her leg and improved the pain situation significantly. A 'shim' made of bottled bone and some metal stayed in the leg post-op.
Last May, Barb began to suffer back pain, then became severely tired. We had a good excuse for every symptom, but in mid-June, finally went to her doctor who ran some blood work. Barb's hemoglobin came back at 4.8, and Barb was hospitalized late that night. We entered a tornado of data, emotional stress, and sleep deprivation. Because Barb was hospitalized over a weekend, most of the treatment she received were prescribed over the phone by doctors she had never met. Barb received several blood transfusions, some of which caused high fevers. Sunday morning, her abdomen suddenly swelled as her liver enlarged. On Monday morning a doctor came to us and gave a sketchy explanation of Multiple Myeloma. She told us the treatment would be VAD chemo-therapy, followed by an allogeneic transplant, and then Barb would be "cured". She said "cure", twice. We found the diagnosis hard to accept, but had no better explanation for Barb's condition. We learned much later, her IgA number was 5,880 compared to a normal value below 400. The back pain was from a compression fracture caused by the disease in the L3 vertebra. Barb was receiving Vicodin to get a measure of relief from the pain. She was barely ambulatory. From this point some other doctors in the same oncology practice began to visit. Barb had a central line put in to facilitate the chemo. In talking with other doctors in the practice, we learned they would NOT use the word cure. I did some study and learned more of the true nature of the disease. Barb's marrow involvement was listed as greater than 95%. The doctors said her survival depended on the response to VAD, which was not a sure thing. The conflicting information on prognosis and treatment within the same medical practice caused us to look further to find some better answers, internal agreement, and options that weren't being offered by the doctors we had. We were engaged with this practice only because Barb's GP knew them and they were local.
The day before the VAD program was to start, we decided to leave our local hospital and move to Loyola University Medical Center. The local hospital was neater and prettier, but we felt that we might get more options and advanced treatment at Loyola. Dr. Sucha Nand, Professor of Medicine, Department of Hematology/Oncology at Loyola offered a slot in his Clinical Study of Thalidomide in newly diagnosed patients. Barb was started on a program of Pulse Dexamethasone (40mg a day, for 4 days every 4 weeks) and Thalidomide (100mg) every day. She also started Aredia every 4 weeks for her skeletal system. Because transfusions had raised her hemoglobin to 10.7, Barb came home after just 3 days at Loyola. A sequence of 10 radiation treatments, centered on the L3 vertebra was begun to quickly stop the disease at that location. The doctors said there might also be a reduction in pain from the fracture. We cannot point to a symptomatic improvement that we can link to the radiation treatment. Because Barb's bone marrow involvement was so very high, her treatment included weekly Procrit injections and continuing blood transfusions. During the first 4 weeks, her hemoglobin continued to slide between transfusions. She was suffering terribly from pain, and muscle spasms in her back. From mid to late July was the worst time. Barb had to be helped everywhere, and felt terrible about her lack of ability to "be useful". She suffered on every level, physically, mentally, and even spiritually. Our extended family and Church family really pitched in with meals and help around the house. This support made this time bearable. At the next visit to Loyola, Dr. Nand looked at the blood numbers, and expressed concern that Barb might not be responding to the Dex/Thalidomide treatment. He said a conventional chemo program might have to be started. However, it takes about two days for the IgA number to return from the laboratory, so he said we would wait for that information. At this point, he prescribed a Duragesic patch for the pain from the compression fracture. The patch was very effective, making Barb much more comfortable and mobile almost immediately. In the two days of waiting, Barb was feeling better because of the patch. Then her IgA number came in at 2,480, 58% lower than the nearly 6000 number 4 weeks before. One week later her IgA was 1060, 57% in one week! Her hemoglobin numbers stabilized. Three weeks later, in late August, the IgA number had fallen to 550. Her response was now at better than 90%. Blood transfusions and then Procrit injections discontinued. She began to feel much more fit, and even returned to a part time job at the local library.
Now, a little over 5 months from the diagnosis, Barb's IgA is still down in the 300's. Her hemoglobin is consistently over 12. She has just "kicked" the patch habit using Vicodin as a bridge. She is a little stiff, but has no bone pain. She is now taking only the Dexamethasone and Aredia, every 4 weeks, and Thalidomide 100mg every day, plus some diet supplements to help relieve effects of the Thalidomide. There have been some side effects from the Thalidomide. It is sedating, so she takes both capsules in the evening. She has a slight hand tremor in the morning, which passes.
No one knows except our Heavenly Father, what the future holds for Barb's MM. There is no long-term history for the newly diagnosed patient treated with Thalidomide. We expect to complete a full year of treatment at the current medication levels.
We are very thankful to have avoided the rigors of chemo and the risks of transplant. Thalidomide is very gentle, by comparison. Not every one's MM will respond to Pulse Dexamethasone and Thalidomide like Barb's, but I am confident it will soon become the standard of care for Multiple Myeloma.
January, 2002: Much has happened since the above was written. I developed peripheral neuropathy in December 2001. The Thalidomide and Dex stopped working the next month. The IgA, which had been down to 339, started going up again. Two rounds of VAD did not even slow it down. By early May it was up to 2620. Two rounds of DT-PACE brought it down to about 1000. Other than numbness and tingling in my feet, I felt fine, with no bone pain, no kidney problems, and no other disease symptoms. I had an autologous stem cell transplant at Loyola University Medical Center in July 2002. The procedure went very well and I had a quick and uneventful recovery. I started on Interferon for maintenance. In September my IgA was 115 and a bone marrow biopsy confirmed a complete remission.
In October the IgA was down to 95. Then it started rising. By December 30 it was 344. Knowing how quickly I relapsed after Thal and Dex, I am convinced this is the beginning of the end of remission. Relapsing only six months after SCT is very disappointing. We are discussing with my doctors what to do next. I will probably get into the Velcade vs. Dex trial at Loyola. I have been told that my case of MM is aggressive, and I am finding out how true that is. A mini-allo transplant may be my best chance for a long-term remission, but none of my three siblings is a match. If a good match can be found in the donor registry, I may have to seriously consider that option.
Life as a Myelomic has been very challenging. Dealing with the ups and downs of treatment, remission, and relapse, requires all the faith, hope, and humor I can muster. Knowing Jesus Christ as Lord and Savior of my life makes it all bearable. He is in control, and He knows what He's doing.
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