Patient Comments: Multiple Myeloma - Follow-up care

What type of follow-up care do you or a relative receive for multiple myeloma?

Comment from: davebrik, 65-74 Male (Patient) Published: October 05

I had a constant itching below my left shoulder blade for about a year. Dermatologist told me is was nostalgia paresthetica; nerve impingement. MRI showed collapsed side of T6 vertebrae. Biopsy after kyphoplasty (worked great) showed multiple myeloma. I had 25 radiation sessions on spine and no problem for 15 months and then I broke my humerus in multiple places. I am now in fourth month of chemotherapy with Velcade, Revlimid, and dexamethasone. Chemotherapy is not bad but I have usual tingling pain. Oncologist wants to do autologous SCT (stem cell transplant). I wonder if side effects may be worse than the benefits!

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Comment from: Sara, 55-64 Female (Patient) Published: March 18

I am 56 years old and diagnosed with multiple myeloma (MM) in May 2010, after terrible fatigue and anemia. Doctors in my area could not diagnose the MM in February 2010 and sent me for several tests. Eventually, I was diagnosed by a nephrologist, because my kidney function was then 20 percent. I was sent to a hematologist, who is treating me now. I underwent treatment for 2010 with thalidomide. In October that year I had further kidney damage which left me with 7 percent kidney function. Dialysis was administered for 6 months. I received a stem cell transplant in April 2011. I was in remission for 2 years, and then it was back. Shock! I decided not to undergo dialysis, my kidney function was then 11 percent. I receive Velcade every 3 months. My kidneys are stable on 11 percent with kidney friendly diet. But Velcade's side effects are terrible. My mind is strong to beat this. To everyone with MM, they will eventually get a cure.

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Comment from: Shelley, 65-74 Female (Caregiver) Published: April 24

My dad is 73 years old, was diagnosed with smoldering multiple myeloma 2 years ago. This past fall it had progressed and he started taking chemotherapy pills, which caused blood clots in his lungs and legs. He is now off of the pills, but they found lesions on his back bone. He had a PET scan, and now they are looking at a stem cell transplant. Hoping that all goes well for him as we do not want to see him suffer with pain.

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Comment from: heartsdesire, 65-74 Female (Caregiver) Published: February 04

My mother was told just 2 weeks ago that she has multiple myeloma. So frustrating, for she had just seen her oncologist and was told all is fine, will see you in six months. She got very ill and her primary care physician did test and found it and then got records, and lo and behold they knew and didn't tell her. We are at a loss at moment, we didn't even know there was treatment for everything; we were told this was incurable.

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Comment from: Phillip, 75 or over Male (Patient) Published: February 20

I have had multiple myeloma for 2 years. I have had no pain but was very anemic. I had chemotherapy for a year. I get Procrit monthly. I think I have been lucky.

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Multiple Myeloma - Symptoms Question: What were the symptoms of your multiple myeloma?
Multiple Myeloma - Prognosis Question: What is the prognosis for your multiple myeloma?
Multiple Myeloma - Diagnosis Question: Describe the tests and exams that led to a diagnosis of multiple myeloma.
Multiple Myeloma - Treatment Question: What kinds of treatment have you, a friend, or loved one received for multiple myeloma?

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