My husband was diagnosed with multiple myeloma in November of 2012. He had been feeling poorly for awhile – back and shoulder pain and very tired. It took three doctor visits before his primary physician listened to his concerns and did blood work. At that point his primary recommended that he see a hematologist.
Before we could go to our first appt. I took him to the emergency room because he had gotten so much sicker. He was kept overnight because his kidney numbers were a little high. This overnight visit extended to almost two weeks. His kidneys were shutting down so after four days in the hospital, dialysis was started and chemo followed immediately after his first dialysis.
It took almost ten months to get him in remission- he was initially on cytoxan, dexamethasone and velcade. In Feb, 2013, velcade was stopped for a bit because of severe neuropathy. In May he started revlimid to help get him into remission. After three months, his light chains had not decreased but increased from 30 to 215. He then started pomalyst which put him in remission in two months.
My husband is very fortunate to have an identical twin so he was eligible for a syngeneic stem cell transplant. He received his transplant on 12/12/13 at Dana Farber. He was hospitalized for 21 days- his stay was extended because his kidneys shut down again after the transplant. He is currently on day 94 of his new “life”.
It has been tough with all the restrictions but the Doctors keep reminding us that its an investment in the future. He still has many foods he can’t eat, can’t eat out until late fall, can’t go in the woods, garden, mow the lawn or be around anyone who is sick. At this time he is still pretty much in isolation. His light chains are in the normal range. Biggest concern is his hemoglobin is staying around 10 so he gets winded easily but he is slowly but surely getting more strength. WBC, platelets have been excellent- kidney numbers (creatinine) stays between 1.8 and 2.0, actually lower than it has been during his treatments.
Praying everyday for a lengthy remission. At this time, doctors are trying to figure out whether or not to use a maintenance drug. Syngeneic transplants are rare so the maintenance part is fairly new to them. God bless all who have been touched by this horrific disease- it certainly is a life changer. No one else can totally understand unless they have experienced it. Praying for a cure!
— Carolyn A.