Patients Multiple myeloma
What is your multiple myeloma diagnosis story?
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Multiple Myeloma can have several debiltating symptoms, such as: bone pain, nausea, fatigue, vomiting...the list goes on and early diagnosis can be crucial in determining the success of treatments.
How were you diagnosed? What were the initial signs/symptoms that made you seek further medical advice?
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Hello members, I hope you do not mind me tagging you. We encourage you to join in on the discussion.
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How are you feeling today?
I thought I would revive this discussion so we can all get to know one another better!
What was your diagnosis experience like? How old were you when you were diagnosed? What symptoms were you having that let you know something was wrong? What treatments have you undergone? How are you doing today?
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Courtney_J, Community Manager, Carenity US
I was loosing blood, headaches n having heavy cycles. I went to my gyno n she ran some test n I needed a hysterectomy, so I had one n was released on a Thursday n started getting sick, couldn't walk or hold anything down, lost 20 pds in week. So I went to hospital and I was in renal failure. Before surgery they assumed I was a healthy 42 yr old, well I keep getting worse, with no answers n I was doing dialysis. 19 days later my kidney doctor, asked if anyone had checked my urine, I said nope so she did n a day later, she said I think I know what wrong with you n she said I'm not a oncologist n I have referred you to one. So I was tested for multiple myeloma and I was in a stage 3 n they basically said I was gravely ill. That was in 2011
I am new to Carenity and I was diagnosed on May 29, 2021, with stage 3 multiple myeloma. My first treatment was on June 4th. I was in the hospital for about 3 weeks getting blood transfusions and chemo. Since I have gone to the Oncology Center first once a week and now two times a month. I have had every side effect possible; some are, weight loss, hair loss, leg swelling, and being nauseated. This past week was the worst, out of commission for four days. I am weak most days and cannot walk without a walker. On July 4th I fell and broke my back! I am now in a Turtle Brace! As all of you know there is no cure for multiple myeloma, only treatment to hold it at bay. Each time I go to the Center, I get news such as no change, change for the better or worse. The life expectancy with stage 3 is 2.5 to 6 years. As a writer, I take this time frame seriously; it is difficult to hear when you have many writing projects planned. However, today has been a good day.
My name is Rick Jackson!
I found out March 2020 I had full blown MM! I had MGUS for 14 years never thought it would go too MM! I had chemo for 6 months for a stem cell transplant! But my numbers on my bone marrow biopsy went from 16% too 75% with treatment! So changed my treatment meds too Darzalex, dexamethasone and polymist! In time took me down too 2%! So had my stem cell transplant and in 90% remission! I have the high aggressive type with gain of 1! Gain 1 of 21q! I take heavy maintenance! I have had before transplant 2 back surgery’s and a few broken ribs! Have lesions everywhere! I live each day like it’s your last cause some day it will be! Good luck too everyone and I pray every night God will bring me through this it’s in his hands
Hi there, I just joined today. I was diagnosed a few months ago. I actually was diagnosed almost on accident. I had been having some bad leg pain and it turned out that I had a fracture in my femur! That started me on a series of tests and things and then I was diagnosed! I had anemia too which was discovered and I later learned that that often goes along with MM. It was honestly all very overwhelming. It's good to know I'm not alone.
I'm doing chemo and radiation too, @rickallen2022 that's really encouraging to here, I'm hoping to get a stem cell transplant too!
Stay well everyone
Hello! My name is Cindy and I was diagnosed in February 2020. I had been dealing with anemia and fatigue for 2-3 yrs. Finally my PCP sent me to an oncologist and got my diagnosis. I was started on Velcaid and Revlimid. Then a stem cell transplant November 3, 2020. I just got the news last week that I have relapsed. Had my 4th bone marrow biopsy and I am waiting on results. They will determine my next line of treatment. This second time has hit me hard. I need to be patient and know they will get a plan soon. Just trying to live everyday and enjoy it.
So right live each day too the best it can be! Stay around positive people
@CindyFrench I'm sorry to hear you've relapsed. i'm still relatively new to all of this and trying to understand all the treatment options and potential eventualities. Please keep us updated on how you're doing and any news you have, we'll be here cheering you on!
I was sooo very cold. Went to the doctor who discovered my anemia, suggested I see hematologist. That doctor said I had iron deficiency anemia and I received 3 weeks of therapy of IV iron. Then worked up for MM. Bone marrow showed 10-15% myeloma cells. He wanted to start me on chemo immediately and ready me for BMT.
I moved to another state before any of that treatment. There the oncologist felt my anemia may not be caused by myeloma. Another BMBx, a PET/CT, and many blood draws. Sent to MM specialist at Mayo who also was unsure of reason for anemia. Now I am considered smoldering and still getting blood draws. Will return to Mayo to see what the consensus is nd create a treatment plan. Currently, I have been at this since October 2020....a full year. I am learning patience. Just wish I knew how to not think about it all the time!
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@Carolynfranz My story is very similar. I have Crohn's disease so I took an immunosupressive and started feeling sick almost from the start. 4 years of pain extreme fatigue, breathing issues, leg swelling (lymphodema) and on and on! After years of no answers, I had asked my neurologist what this all could be and she mentioned the mgus. My symptoms seemed to match MM so I saw my hematologist and she confirmed that I fit the CRAB criteria and my bone marrow was between 10 and 15 percent monoclonal cells. A bone scan showed 2 lesions in my skull but that was determined later to be misdiagnosed vascular lacunae. Now they tell me all of these symptoms are from my Crohn's disease. My latest blood work up shows that my light chain lamda and kappa numbers are through the roof, but the ratio shows normal, so, no treatment for me!
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