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Hi--husband going through tests for Multiple Myeloma

Posts: 2
Joined: Oct 2012

Hi..I don't where to begin except that I have been crying for 2 days and feel so alone..For the past year my husband has had test after test for undiagnosed vertigo..Some funky bloodwork led to further tests and scary initial discoveries..The most worrisome have been an M spike in the serum. From what I gather it is on the lower end with the Monoclonal IgM Monoclonal Kappa at0.14 g/dl, IgG Kappa at 0.65 g/dl..The doctor also mentioned light chains in the urine..Granted I have not much science background so what I learned 30 years ago in biology about this stuff is very confusing and overwhelming..He was just scheduled for a fatty biopsy, a bone scan and bone marrow test...The doctor did not say anything and said to just wait..we don't go back until November 1 after he has had all the tests.

I have two girls 20/16 and myself I have spinal/chronic pain issues from a serious accident..We both are working full time and I am very scared about the possible diagnosis plus the fact that his mother died 14 years ago from MM..

I know he could possibly have the MGUS or even a lower stage if it is MM..He is only 54..luckily he has not had abnormal levels of calcium, hct,hmg, BUN, Creatine..

I feel so lost and am struggling to remain positive and strong which i must for my kids..this waiting is the hardest and given my anxiety right now I can't sleep or concentrate.

I am just looking for a friend or someone who is going through this or something similar.thanks for listening...Amy

Posts: 2
Joined: Jul 2009

Hi Amy, My name is Cindy. I was diagnosed with MM in July 2008 at age 49. If you have any questions let me know I am her to listen.

Posts: 9
Joined: Nov 2012

Amy, I was 50 years old when I was diagnosed with MGUS or smothering myeloma in October 2007. The doctor told me that the protein count was still low. He said it would have to reach a certain level before he could start any treatment. I was being check by him every 3 months. September of 2009 his office contacted me about having a PET scan. I had to delay the scan, because I contracted the swine flu from my students.
November 2009 I had the PET scan and on December 3rd 2009 I went to see my Dr. He took more blood samples and told me my cancer had accelerated. He told me that the next week we would start chemo.
They used Valcade, Revlimid, and Dexamethizone. After 3 months of chemo, I met with a bone marrow transplant Dr. I then went through the steps to accelerate my stems cells. They took 3 days to harvest enough cell to be able to do 2 transplants. then I received a chemo that shut my bone marrow down. A day later I was given my stems cells back.
It took about 12 days for me to be well enough that the Dr. said I did not have to come back until my 100 day after transplant, unless there was a problem.
I went to my hematologist and he put me on a maintance of 10 mg Revlimid. I am now in remission.
Hope this info will help you.

Posts: 3
Joined: Nov 2012

Hi Amy,

I joined this network last week, hoping to find support from other people in my situation. I read your post and that was me a few years ago. My husband was diagnosed two years ago after many months of severe back pain. The doctors kept saying he needed physical therapy but it was intolerable for him. Finally, I decided to call 911 and take him to emergency. This caused the hospital to do several tests, scans, etc and within days we were told that he had stage 3MM. It was a very dark period for all of us. His father had passed away in 2007 of Melanoma. The diagnosis was in Aug 2010 and by Aug 2011 he was already at City of Hope getting a cell transplant. Unfortunately for us, they caught the cancer kinda late because he had 3 huge masses along his spine. They were able to treat him with radiation and that was successful thank God. Now here are, still fighting strong. My husband is a fighter and has a positive attitude. He is only 48 years old. I also want to share that when my husband was first diagnosed, all I read online was the "Incurable cancer" but you must know that a lot of progress has been made in finding different chemo treatment combinations. Please stay positive and live each day to the fullest. Of course I say this and believe me, I fall apart often. But then I see my husband's face and I realize that as long as he is with me, I have hope. Please count on me if you ever want to vent. I am so grateful to you for sharing your story. Stay strong. God bless.

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