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@oregongirl

Posts: 738
Joined: Mar 04, 2017

Multiple Myeloma

Posted by @oregongirl, Tue, Jul 24 2:11pm

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?

REPLY

Hello @oregongirl. You may notice I moved your discussion to the Blood Cancers & Disorders group. I am inviting a few members who have experience and have discussed myeloma to share their experience. @1nan, @beckyoutlaw1115, @ozys, @jeanroberts, @stephanieprieto, and @lisa54 have all discussed being diagnosed with a form of myeloma or being a caretaker for a loved one who has been diagnosed. They may be able to share some of their experiences with the diagnosis process and what they will be facing next.

@oregongirl, You mentioned you are sending note to your primary care physician and your RA, have you had a chance to discuss these results with a hematologist?

@JustinMcClanahan

Hello @oregongirl. You may notice I moved your discussion to the Blood Cancers & Disorders group. I am inviting a few members who have experience and have discussed myeloma to share their experience. @1nan, @beckyoutlaw1115, @ozys, @jeanroberts, @stephanieprieto, and @lisa54 have all discussed being diagnosed with a form of myeloma or being a caretaker for a loved one who has been diagnosed. They may be able to share some of their experiences with the diagnosis process and what they will be facing next.

@oregongirl, You mentioned you are sending note to your primary care physician and your RA, have you had a chance to discuss these results with a hematologist?

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Yes. His feeling is the low results are not saying I have Myeloma nor are they saying that future test will show low percentages as now. So one yr from now more tests. I texted my PC and RA doctor who referred me to Oncologist take positive steps to follow my blood work and not wait for one yr. My question if you have tests showing even 1 percent where did that 1 percent come from. Not only that but would it not be best to get rid of small percentage NOW?

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.

I too trust in the Lord. Truly when I retired I was called to work with Casa. I loved it. When my sweet husband died having Casa kept me alive. When they find this and it is not time to treat it why is it there. I always thought treating something when it's not full blast grown is better. Thank God for my RA doctor. She was so concerned but kept her cool. I am 76. Waiting even a year is ok. But I WD rather spend my 80 and 90 healthy. Oh good Lord who am I fooling..who wants to be around at that age. Some do well however. I have a solid mind Thank The Lord.

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

@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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Vertabra

@oregongirl

I too trust in the Lord. Truly when I retired I was called to work with Casa. I loved it. When my sweet husband died having Casa kept me alive. When they find this and it is not time to treat it why is it there. I always thought treating something when it's not full blast grown is better. Thank God for my RA doctor. She was so concerned but kept her cool. I am 76. Waiting even a year is ok. But I WD rather spend my 80 and 90 healthy. Oh good Lord who am I fooling..who wants to be around at that age. Some do well however. I have a solid mind Thank The Lord.

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Hi again. I love seeing your sense of humor come through! We all need that for enjoying life in general. I just turned 77, so we are in the same ball park if that helps you at all. If treated when I was younger, those 14 years earlier, treatments didn't offer the life expectancy that is possible today with the newer treatments. There has been research done regarding treatment before full blown MM exists. It was explained to me that there was less risk waiting than having treatment before significant disease progression. Again, your doctors can explain all that to you. Keep thinking. You are doing good!

@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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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.

@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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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.

@oregongirl

I too trust in the Lord. Truly when I retired I was called to work with Casa. I loved it. When my sweet husband died having Casa kept me alive. When they find this and it is not time to treat it why is it there. I always thought treating something when it's not full blast grown is better. Thank God for my RA doctor. She was so concerned but kept her cool. I am 76. Waiting even a year is ok. But I WD rather spend my 80 and 90 healthy. Oh good Lord who am I fooling..who wants to be around at that age. Some do well however. I have a solid mind Thank The Lord.

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1nan, I am so grateful for your words. You are correct. My mother died from Colon Cancer.. No treatment except removal and Cancer
drugs. She refused and lived to 71. She was in good spirits and you would not have known she was dying. She is my pattern for how to die. My father, whom I cherished to the end, struggled his last years. But he lives to a very old age. I believe it was about 90.

If my MM comes on I will head for Mayo as soon as possible. I am very fortunate to have the head of oncology as my doctor. Reason I asked about pain is because my doctor said it can become very painful. I pray it stays we're it is.

@oregongirl

If my MM comes on I will head for Mayo as soon as possible. I am very fortunate to have the head of oncology as my doctor. Reason I asked about pain is because my doctor said it can become very painful. I pray it stays we're it is.

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Smart to have the Mayo plan. As for pain, I have significant osteo arthritis and cannot take any form of anti-inflammatory drugs, so hard to know what is what anyway. You learn to focus on what you CAN do.

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

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.

@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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My values are 1 percent. I am stage 3 kidney disease which I have been told by one Dr that my kidneys are fine. If you were at 1 percent would you agree to wait for 1 yr to treat? Dud your values go down after treatment?

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