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Multiple Myeloma

Blood Cancers & Disorders | Last Active: May 10, 2023 | Replies (56)

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Hello oregongirl. I agree with you that you need much more information, and when you get it, know that I am open to helping you if there is a way. Just know that I was sent to an oncologist by my rheumatologist in 2002, saw my Dr. at Mayo in Rochester in 2003, and then diagnosed at Mayo in 2004 with Multiple Myeloma. At that time the decision was made to "sit on it" if I was comfortable with that, and that is exactly what I did. For the next 14 years! I was followed both locally and by my Dr. at Mayo during that time, with specific markers under watch. I was aware of what we were waiting for, and religiously had labs and other tests to monitor the state of my MM both here and in MN. When the "magic numbers" were reached in 2016, I started treatment under direction of my Mayo Dr. During those years, I considered it as advised at Mayo, as a chronic disease. I don't see it as something to be feared; as I always told my kids, be smart, not scared. So working with these two wonderful professionals, one in PA and one in MN, has been my journey. Meanwhile, I keep living my life, and found that God never cuts you a break when it comes to serving Him. I had plenty to do in my retirement that began in 2002. This is not a "sermon," but the truth of my faith journey. When I was diagnosed in 2004, there were not near the treatment options that there are today. My current treatment came out of trials at Mayo last year and is highly effective for me at this point. If that changes, there continues to be other treatments coming out of the pipeline. I will be heading back out to Mayo soon for follow up, and love that any questions I have will be answered completely, with other information and suggestions specific to me being offered back. My local oncologist will wait for update to treatment recommendations. I am open to a personal call later if you think that will be helpful. I won't give you any advise or specific direction, but am willing to share my experience as it may be helpful to you. But in the end, being armed with information is the best thing. Always have a caring friend or relative with you for appointments who can help you with recall, take notes if necessary, and get copies of your test results to help you better understand. Good luck, and I look forward to hearing that you are moving forward better informed, and less fearful. Peace.

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Replies to "Hello oregongirl. I agree with you that you need much more information, and when you get..."

May I ask you. Is there much pain,,? I have a repaired vettsbrsw slready


That is a very pointed question, and one that I have no doubt varies from person to person. I did have spinal surgeries during the "waiting years," but I always believed if something broke, fix it, and move on. At this point I can't have the surgery that would repair current issues, but I work with pain management professionals to address those issues. Do I like it? Of course not. But I have friends dealing with issues much more life restricting than mine. We once laughed that if we all through our diagnoses on a table, and could help ourselves to any other one there, we would all take back what is ours. You mentioned a question of how long you might want to live. I was hyper professional in three career fields, never slowing down except to rock my children. They always came first. But at this point in time, I rather like having an excuse to slow down, to watch a movie in the middle of the day if I want, and schedule with friends on my timetable. It isn't a bad thing, just different. Stay with the positives any way you can get them.

Inan, I agree with your thinking about slowing down. When I get up if I happen to hang around in my robe beyond 9:00 am, I always feel like the behavior police will show up at my door. That comes from years and years of being the first one in the office in the morning. Hard work and being away from my wonderful husband. He is gone now, but I believe I would still do it the same way. We enjoyed so much great travel because of my good income. But, when you retire, your income stops.. You watch your savings account like it is the only thing keeping you going. Oh ya, it is. I only regret that my husband is not here to see me through my end of life as I did his. My kids don't get it yet. Must be a safety valve put into the kids brains. They do not think in terms of end! After I spoke with the oncologist, and agreed to wait and see how the tests look in a year, I texted both my Primary and my RA doctor to help me watch my blood work. They usually pull blood work for different reasons. However, I found the RA blood work to be VERY similar to the Oncologist blood tests. She is actually the one who referred me to the Oncologist. I am seen by the University of Texas. I sometimes fear that as it is a TEACHING school. Thanks for responding to me.

1nan.....I re-read your response this morning. So, I see that your doctor told you to sit on it for awhile also. My question. Why are doctors not going in and digging out the cancer before it spreads. I know MM is a blood disease. I have heard of total blood transfusions. Do they work? So if it took you 14 years, then I will probably have that on my death certificate or it still won;t show up in the end. I am 76.

After years of being treated for RA, I am led to believe that I do not have RA. I have had the symptoms of MM for years. Evidently, it never grew but just gave me symptoms of RA. Fortunately, my doctor ran a blood test and this showed up.

May I ask what your percentage was when they first found it? This is all too much. I see my RA doctor in about a week. I will ask her the same questions. I was thinking of making a trip to Mayo for their suggestions. Do you have any idea if Mayo as a website of information on MM?

Thank you for your help. I will go on living and resting when I get tired. I will say my walking has gotten much better. After my passing out and falling, I had three weeks in the hospital. They still do not know what caused me to faint. Imagine in 2018, we can't get proper diagnosis of several diseases. What is happening to the Medicine? I am also questioning my present doctors who are at the University of Texas. They are a teaching school. I believe I will start looking outside of the University for my medical doctors. I just recently was told by a new neighbor that his girlfriends mother was ill. She was placed at the University of Texas hospital. A needle was not placed correctly in her arm and she was not receiving the meds or pains meds. She is in Intensive care now. That make me think about my choice of medical care. I will share this story with my RA doctor.

My son nearly died due to a mis-diagnosis. They told him had two months to live. Surgeons open his skull only to find there was no sign of Cancer. They closed him up and sent him home. Within a week, he had a grand Mall Seizure. He is in his early 30's. He does not trust doctors PERIOD. I wonder why. The doctor who diagnoses his non existent cancer was a University doctor. Interesting but it angers me.

Good evening! I just joined the group for multiple myeloma moments ago. A family member near and dear to me was diagnosed today, after much lab work and biopsy. I truly would love to talk to you by phone. I do not reside in MN and know that Mayo is one of the best! She is asymptomatic.