Multiple Myeloma

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.

Yes, very true. Did it take long to get into oncology at Mayo. Also one blood test takes at least 4 days. Do they have visitors housing? I live in Texas and will fly to Minnesota

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.

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.