Hello All,
I am a 43 year old female from SLC, Utah. I was diagnosed with an M-Spike in the Gamma Region (IgA) on the 18th of December, 2014. The blood test was run because I have been experiencing symptoms of a mast cell disorder for the last 2.5 years. All of the mast cell issues came back negative, however the M-Spike was discovered. We retested and it was still present on 1/1/2015. I have a bone marrow biopsy scheduled for the 21st of January and will be doing the 24 hour urine and other blood work in preparation for this appointment. I am nervous, scared and anxious. It's hard to explain this level of uncertainty to anyone. I thank you for adding me to your group.
Hello Diamondinthesky,
Welcome to our little "family". You've come to a great place/ There are many people here who can relate to the feelings you are having a difficult time putting into words.
I joined this group almost a year ago when my boyfriend was diagnosed with MM (February 2014). I knew absolutely nothing but, wanted to inform myself as best I could so I was able to support him. What better way to do that than to join a group where other's in the same situation could help me to understand. That is exactly what has happened here! Much to my surprise, I was asked to be a moderator. I consider it an honor and a privilege to be here among such amazing people. For me, this group is a Godsend and has been very rewarding.
My boyfriend is 59 years old. He had been experiencing muscle cramps for a while and mentioned it to his chiropractor who sent him for blood work & x-rays. After a skeletal survey and bone marrow biopsy we learned he has MM. I can fully understand your feelings of nervousness, being scared and anxious. Both my boyfriend and myself felt the exact same way. I immediately starting reading online about MM. I knew at some point a SCT would be recommended. I am not going to lie to you, that really scared me. In late February, chemo began. Revlimid, Velcade & Dex. I cried and I prayed. God answers prayer and He answered mine. My boyfriend did very well with the chemo. Yes, he had fatigue but, he continued to go to work everyday which truly amazed me. In early August, he had a SCT. Amidst all my fear, he came through it with flying colors. Never got sick from the high dose chemo as I had feared. It was done outpatient. He checked into the hospital 2 days prior and was given the chemo both days, on the 3rd day, he was given his stem cells and sent home about an hour later. The next 2 and a half weeks were spent going back & forth to the hospital for 5 hours a day of monitoring & hydration. Approx. day 8, he developed C-diff which resulted in Colitis. This kept him in the hospital for 5 days on antibiotics. He returned to work full-time 6 weeks following his transplant. In early December, we learned despite the transplant, his kappa light chain numbers are still above the normal range. He began consolidation therapy of Revlimid & Dex in mid - December which he will be on for 2 months. He will then remain on a maintenance dosage. Through all this, he has continued to work full-time. I am extremely proud of him. This man has taught me that strength comes from within. He is my hero.
My boyfriend & I are also big believers in diet and its affects on your health. When he was diagnosed, he immediately changed his diet to an anti-inflammatory, low carb eating plan. We believe the stronger you go into something like a transplant, the stronger you will come our of it.
All that said, my personal opinion for handling this as best as you can is to first inform yourself as much as possible. Knowledge definitely is power. Seek a myeloma specialist and a good hospital. Have a good support system in place be it family, friends, a support group etc. Most importantly, pray because God does hear you!
God Bless,
JerseyGyrl
Thank you so much for your response. I hope things are going well for both of you. This next week seems like it is going to be the longest week of my life. I had an episode of anaphylaxis on Thursday night and ended up in the emergency room. I just don't know where to begin, but praying sounds reasonable. Thank you again for supporting me. I look forward to being able to provide support to others. Fortunately, I have a really good network of medical providers and have a specialist who deals with MM specifically. Blessings.
Hello it seems to me that waiting is the most hardest thing to do when you first start ,My daughter was told in the E R that she had cancer, but we had to wait for all the tests to come back before we were told anything even when she was on the Cancer floor in hospital.No straight answer from any one till results came back that she has M M