Multiple Myeloma

Posted by Texas Freedom @oregongirl, Jul 24, 2018

My RA doctor sent me to an Oncologist and her reason to me included such words that I could not get it. All I remember is that something had to be checked out and they will try one thing and there could be some other means…bla bla,… I have not been good about asking direct questions. Maybe I don;t want the answers. But now after two visits to the Oncologists and one blood work getting messed up, I spoke up. He said that the Free Kappa and Lambada Light chains were showing possible signs of Multiple Myeloma. One more blood test to use a compare and I got a call yesterday saying that the tests results show a 1% read. He wants to wait it out about a year and follow me then. He thinks that maybe this is showing up because of something else is wrong. Gee, don’t I get a hint of what that could be? Also, I have read if you put off treating Myeloma, it could be harder to get it. Ok, I am sending a note to my Primary and to my RA and putting them on notice. I want to know what it is that could be causing even the low reading if I don’t it? What else is wrong?? Anyone have any experience with Myeloma?

@gingerw

Thank you for this thread! I was diagnosed with MGUS last Nov 2017, and right now my values are at 5%. I was blessed that my nephrologist saw unusual results that prompted more testing. You see, I also have a very rare kidney disease, and that has been foremost in my mind for over 3 years. At age 66, I want a lot more years to do what has been set out for me. So, I get my blood work done every 3 months, follow a good renal diet, and try to be of service everyday.

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There was another test recommended by test results. Oncologist did not do extra text. I wonder why? I am 76.

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@gingerw

Thank you for this thread! I was diagnosed with MGUS last Nov 2017, and right now my values are at 5%. I was blessed that my nephrologist saw unusual results that prompted more testing. You see, I also have a very rare kidney disease, and that has been foremost in my mind for over 3 years. At age 66, I want a lot more years to do what has been set out for me. So, I get my blood work done every 3 months, follow a good renal diet, and try to be of service everyday.

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And the answer is one question away, whenever you are ready to ask. Sometimes it is helpful to gather information in small doses, and connect it with what else you have learned.

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@gingerw

Thank you for this thread! I was diagnosed with MGUS last Nov 2017, and right now my values are at 5%. I was blessed that my nephrologist saw unusual results that prompted more testing. You see, I also have a very rare kidney disease, and that has been foremost in my mind for over 3 years. At age 66, I want a lot more years to do what has been set out for me. So, I get my blood work done every 3 months, follow a good renal diet, and try to be of service everyday.

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Oregongirl, each person is different. My oncologist is a gem, and highly respected in her community. I trust what she tells me. I have gone through the bone marrow biopsy, CAT scan, and all the special bloodwork. One the last appt she told me she was going to try me at 6 months between appts. My kidney disease is stage 3b [in low 30s]. I watch my diet, stress levels, and have learned to forgive myself for the reduced energy levels. At this time not on dialysis. My oncologist and nephrologist work well together. I recently moved, and now I drive 100 miles each way to see them! You need to know the reason for your kidney disease; top two are high blood pressure and diabetes.

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I am in the dark with the kidneys. My Primary states most Seniors have Kidney failure. I am just hanging hoping all as Drs say. Do you know what your percentage was when your Dr started treatment,? To be honest I have a DNR in my file. I have already told Dr I do not wish to do Chemo. I believe he would still be totally honest with me.

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@oregongirl

I am in the dark with the kidneys. My Primary states most Seniors have Kidney failure. I am just hanging hoping all as Drs say. Do you know what your percentage was when your Dr started treatment,? To be honest I have a DNR in my file. I have already told Dr I do not wish to do Chemo. I believe he would still be totally honest with me.

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I was at 69% when the doctor first told me about it. Now I hover about 32%. Two years ago I had to retire from full time work due to lack of energy. I cannot be transplanted, as this kidney disease is my body attacking and shutting down my kidneys. So it will do it a transplant, also. I watch my weight, eat right, minimize stress, take blood pressure meds to keep that under control. A medical professional will not force you to do anything you do not want to do. My husband knows I have a DNR order on file, and understands what I want.

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@1nan

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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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.

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After 19 years with MGUS, I was diagnosed with MM last December. I did not have back pain, but I did have numbness and I staggered. My blood work did not indicate full blown MM. It took an MRI to detect it. No X-ray showed it either. I had to walk into an ER and ask for the MRI. You might try requesting one.

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Can anyone tell me why MRI's are not done? I have been asking for one for a few months. They just say I don't need one. But, they want to put shots up and down my spine and my neck In addition, it appears and MRI will give me an honest answer about MM. Read Spooner's reply. Spooner, you can just walk into ER and ask for an MRI?

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@oregongirl

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

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You may want to first schedule with hematology. As for housing, there are many options in and around the area, and most, if not all, have shuttle service. The Mayo site has answers to all your questions. Good luck.

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@1nan

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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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.

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@oregongirl

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.

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I replied to Oregon by mistake. We just got a diagnosis of multiple myeloma today. I would love to talk by phone.

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Hi Oregongirl, Looks like you have not a definite diagnosis of Multiple Myeloma. It is important to get it from a Clinic that specializes in MM. I was diagnosed with MM 26 yrs ago. At that time there was not treatment available but over the years MM has become highly treatable. Sometimes doctors decide to wait with treatment, sometimes they prefer to start treatment immediately. Every patient has a different MM journey. MM needs to be observed on a regular basis. I see my hematologist at Mayo Rochester every 4 months even though I have been now 10 years without treatment. Ask many questions, the more you know the better and take care of yourself. Remember With MM our immune system is not working at 100 %. Infections can occur more often than without MM. Wash your hands often and stay away from people with any kind of infection. Best wishes, Ilse

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Thank you so much for your words about MM. I ,moved to Idaho and left the University of Texas Medical Center doctors. I will see a new Primary Doctor next week. He can review all my records and we will go from there. I agree every doctor will look at it differently. I am always cautious around people. I get the flu shot even tho people say don't Then around me are people dropping like flies into the Flu. I have one thing going for me. My healing of anything seems to happen overnight. Cuts, bruises anything. Some take longer, but I heal quickly If I am diagnosed with MM, I probably will listen to them tell me what they can do, and I will go home. Personally, I want nothing to do with the hard drugs. Thank you SO much for writing to me about MM

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I would like to share on @ilse's behalf, an opportunity, for those who are able, to meet in-person in Ilse's organized support meeting on Mayo Clinic Rochester's campus. You can find more information here, https://connect.mayoclinic.org/page/hematology/newsfeed/multiple-myeloma-patients-and-caregivers-meeting/.

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