Patient Comments: Multiple Myeloma - Treatment

Question:

What kinds of treatment have you, a friend, or loved one received for multiple myeloma? Submit Your Comment

Comment from: Hope helps, 65-74 Female (Patient) Published: August 16

My treatment for multiple myeloma began with proactive surgery, inserting steel rods in my femurs for support followed by 9 months of chemotherapy (Velcade, Revlimid, dexamethasone), followed by stem cell transplant, followed by physical therapy, followed by a full regimen of vaccinations to provide support for my immune system. Oncologist says I am still in remission, but I should probably have radiation treatments for that to relieve pain in my right leg.

Comment from: Raziye YAZ, 65-74 Female (Patient) Published: June 01

She is my wife. She had multiple myeloma in 1999. She had two operations, from back bone she had first autologous stem cell transplants. Ten years later she again needs treatment for myeloma. She had also PET scans, bone cell biopsy and doctors decided on second transplant. First time she had chemotherapies four times. First time heavy chemotherapy before they wanted to have stem cells, but she did not have. Now we have to wait, I think till June 2016, when she will go to the hospital for transplant.

Comment from: pw, 65-74 Male (Patient) Published: February 17

I was diagnosed with MGUS (monoclonal gammopathy of unknown significance) after a simple blood test result showed too high a level of phosphorus. Follow up blood work showed elevated IGG-L protein. In about a year it became high enough to change the diagnosis to multiple myeloma. I tried chemical for about a year (VAD). This worked for a while. The year was 1998. My IGG level became unacceptably high, so I obtained an allogeneic bone marrow transplant. My brother was the donor, with a 4/4 match. This was followed 6 months later with a DLI (donor lymphocyte infusion of T-cells) from my brother. This treatment worked for me. I have now survived 18 years from initial diagnosis, and have had no recurrence.

Comment from: gowda, 45-54 Male (Patient) Published: May 14

I had back fixation, 16 weeks VTD (venous thromboembolic disease) regime and autologous bone marrow transplantation as treatment for multiple myeloma. Lucky, and doing fine.

Comment from: fresh.fresh, 65-74 Female (Patient) Published: September 09

I was diagnosed with multiple myeloma in 2009. I started out on 25 mg of Revlimid. It is helping me, but I have severe stomach pains when I eat and 3 to 4 times a day diarrhea. Within the last 3 months I've been in severe pain on and off in my back and sometimes both sides. But I'm able to walk every other day with my dog. Sometimes enjoying it and sometimes not. I'm given Zometa for bone strength every three months, but believe monthly would be better for me.

Comment from: ash3368, 55-64 Male (Caregiver) Published: November 28

My father got diagnosed with multiple myeloma a couple of years ago but it only recently, yet very quickly, started presenting with symptoms. He is going to a cancer center of America where they are more equipped to deal with this type of cancer. I believe where he was before has only made things worse, as the doctors weren't trained to deal with this cancer. The biggest problem he has right now is neuropathy pain in hands and feet. As of right now he has to get evaluated from ground up at this new place and get the proper cancer/pain management started.

Comment from: asa, 65-74 Female (Caregiver) Published: February 07

My wife, 65 years old is suffering from multiple myeloma and is on thalidomide 100 mg daily as maintenance dose. Her major problems or side effects are extreme weakness, huge swelling both legs below knees and feet causing difficulty in walking, and backache.

Comment from: JD's caretaker, 45-54 Male (Caregiver) Published: August 23

JD was started on Velcade then SCT. Followed by maintenance therapy of Thalidomide for 2 years. Has bad neuropathy in feet and had skin cancer removed. Both caused by treatment. He says, "A small price to pay".

Comment from: misty4555, 13-18 Female Published: July 19

I had a loved one who had multiple myeloma, and one of the treatments this person received was a stem cell transplant from a donor who was a perfect match. The person also received a lot of new FDA releases. They were a guinea pig in this case. My loved one was at stage three. I hope this helped a little.

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