[Marie64]

Wife of Multiple Myeloma Patient

by Marie64 on Fri Sep 21, 2012 9:06 pm

Our journey with multiple myeloma started in 2007 when my 43 year old husband woke up with some back pain. We thought he had slept wrong. Within 2 days he was on the floor with pain and back spasms. After a week of tests it was determined that he had a compression fracture at T5. Our family doctor suspected multiple myeloma.

Darling Husband (DH) went through a variety of tests prior to the vertebrae being replaced with a titanium cage. When they went in to replace the vertebrae, they literally had to scoop it out because it had turned to mush. The mush was biopsied, and did not show anything malignant. Neither the family doctor or the neurosurgeon were convinced and DH was referred to an oncologist, Dr. David Loesch. Dr. Loesch ran a variety of tests - again, nothing. He determined that DH had an aggressive form of osteoporosis.

Fast forward to the fall of 2009. DH started experience back pain once again. By the first of 2010 he could barely function. At one point he ended up in ICU in respiratory arrest because of a reaction to his pain meds. It was during this stay in the hospital that they again started running tests. An MRI or CT, I can't remember, showed lesions on his skull, pelvis and lumbar region. A bone marrow biopsy again showed nothing. We once again went back to the oncologist. At this point, Dr. Loesch was concentrating on research and not direct patient care so we saw a new doctor. We were both apprehensive because Dr. Loesch is one of the best in the area.

The new doctor was convinced that it was multiple myeloma even though we didn't have the pathology to back up that assumption. She wanted to do a test that hadn't been run before, the free kappa light chain serum. It wasn't one of the protocols back in 2007. Sure enough, the free kappa came back at 40+.

In March 2010 he began treatment with Revlimid/Dex with a monthly Aredia IV. He had good results. At the end of July, enough stem cells were harvested for three autogulous transplants. On August 10, he received his first STC transplant. He spent 14 days in the hospital and then came home. He returned to work full time in mid October.

He continued to have his monthly Aredia until the end of January 2012,. At that point he was still in remission and the decision was made to go to every 6 week checks and IV. In March of this year he went for a regular appointment, the first appointment that I hadn't gone with him since 2010. The free kappa light chain indicated that he was out of remission.

They immediately started the Revlimid/Dex therapy again. This time, he had a horrible time tolerating the Dex. His already moderately high blood sugars went out of control, he experienced extreme "chemo brain" and fatigue. After four cycles, the free kappa was in the normal range and PET/CT showed no active lesions. He is now on maintenance Revlimid.

He still experiences chronic bone pain which is managed with pain meds. Through it all, he has continued to work full time. He carries our insurance, which has been wonderful. We are just thankful for each day and take it one day at a time.