I have asked a couple of questions before (see this thread) and I am trying to learn more as I go along! Let me refresh your memory.
My husband was diagnosed with smoldering multiple myeloma in December 2013. He is 63 and is 430 lbs (195 kg). At the time he was diagnosed, his bone marrow biopsy (BMB) showed 15% plasma cells. He is IgG kappa.
His chromosomal abnormalities showed a "cytogenetic IGH rearrangement with 14 being etiology of this translocation." Doctor has said he is high risk because of this, and at this time he would not be a candidate for a stem cell transplant or other aggressive induction regimens.
He is currently being watched by Banner MD Anderson out here in the Phoenix, Arizona area. His recent labs were:
RBC 4.18 ( 4.30-6.00)
HGB 12.6 (13.5-17.00)
BUN 32 (8-25)
Creatinine 1.60. (0.60-1.50)
GFR 46 (>=61)
Calcium 9.3 (6.0-8.0)
IgG 1175 ( 694-1618)
IgA 236 (81-463)
IgM 32(48-271)
Gamma M spike 0.8 g/dL (8 g/L)
Kappa light chain 373.05 (3.30-19.40)
Kappa / Lambda ratio 15.07( 0.26-1.65)
My husbands hemoglobin is trending slowly downward, his light chains are going up, and his kidney function is getting worse, or at least it seems that way from what I see if I read the numbers correctly.
My question is, in his case, would he be someone that might progress faster to multiple myeloma, and, because of his weight and translocation and doctor not wanting aggressive therapy or stem cell transplant, will this make it harder to treat?
Maybe I am not understanding all of this, but please anyone I would really appreciate your input! Thanks again to all of you out there. I have learned so much from this site, and I am sure I have more to learn! Oh, and so far no bone lesions that I am aware of!
Doris
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Will this smoldering multiple myeloma progress faster?
Hi there!
I do not know what to ask our doctor. And, if I am understanding this correctly, to me it seems like there are so many drugs out there to treat myeloma, and so many people getting stem cell transplants, that I do not understand what they are saying and why. We do not go back to see his doctor till last part of September, every 4 months.
He has a cough that has been getting worse over that last 2 weeks, so I made a appointment with our primary doctor for next week. My husband seems very tired lately! Just call me a worry wort!
Thanks for any comments or suggestions anyone can give me! Doris
I do not know what to ask our doctor. And, if I am understanding this correctly, to me it seems like there are so many drugs out there to treat myeloma, and so many people getting stem cell transplants, that I do not understand what they are saying and why. We do not go back to see his doctor till last part of September, every 4 months.
He has a cough that has been getting worse over that last 2 weeks, so I made a appointment with our primary doctor for next week. My husband seems very tired lately! Just call me a worry wort!
Thanks for any comments or suggestions anyone can give me! Doris
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Will this smoldering multiple myeloma progress faster?
Ward211,
I am responding to you because you sound quite worried and puzzled by what is happening to your husband. Although I am not a doctor, I will take a stab at this. Maybe more experienced members of this forum will then chime in.
If I understand correctly, your husband has been diagnosed with "smoldering myeloma," the stage before actual, symptomatic multiple myeloma. Normally, with smoldering myeloma, most doctors do what is called "watchful waiting." The disease is monitored regularly to see whether there is progression that will require the commencement of treatment.
From what you have indicated, your husband has not started any actual treatment for multiple myeloma. His doctor will see him again at the end of September and at that time will determine how to go forward.
What seems troubling is that many of your husband's test results are not within the normal ranges. In particular, the markers for kidney function are not normal. So, for example, his BUN, his creatinine, his calcium, and his GFR are not what they should be (his hemoglobin is also somewhat low) and his IgM is below normal. His light chains also are not normal.
All of these, in my opinion, whether they are related to myeloma or not, need to be addressed by a competent and knowledgeable physician. I, in your shoes, would not wait until the end of September. You are right to have made an appointment with your general practitioner. Present him with these test results and ask him what he makes of them.
I myself have been diagnosed with t(4;14), which puts me among intermediate / high risk myeloma patients. I am older than your husband, but I was not declared stem cell transplant ineligible largely because at the time of diagnosis I was pretty healthy. I would guess that kidney issues would discourage doctors from pursuing a SCT for your husband. If he has other health problems associated with his weight, that, too, would probably make him ineligible because the transplant is a grueling procedure for many people, putting a lot of stress on the body organs.
Not everyone with myeloma gets a stem cell transplant. I, for example, opted out of one, but perhaps in a few years will still qualify for one should it be deemed necessary. There is currently a lot of discussion about the efficacy of stem cell transplants in light of the novel drugs that have come into use in the last few years. Not getting a stem cell transplant is not necessarily the end of the world for your husband, if this is something that worries you greatly. The verdict is still out on transplants, that is, whether we need them or not.
Finally, you mention that your husband has developed a cough. This is a question that interests me personally because, since starting treatment nearly a year ago, I, too, have a bad cough. I, however, am on myeloma medications and my various specialists have yet to determine what the source of the cough is, although they are beginning to think that it is medication related.
Your husband is evidently not on myeloma meds, so the source of his cough may be elsewhere. It is possible, if he is on blood pressure medication, that that could be causing his cough. In any event, he needs to be examined by a doctor to make sure that his lungs are clear and that he does not have a respiratory disease. Acid reflux and/or post nasal drip are usually found to be the cause of chronic cough.
I am actually surprised that, with your husband's test results, more follow up has not already been called for by his doctors. You are his best advocate, so do not wait patiently for some appointment in the distant future. I, in your place, would act now to get to the bottom of things.
All the best to you and your husband.
I am responding to you because you sound quite worried and puzzled by what is happening to your husband. Although I am not a doctor, I will take a stab at this. Maybe more experienced members of this forum will then chime in.
If I understand correctly, your husband has been diagnosed with "smoldering myeloma," the stage before actual, symptomatic multiple myeloma. Normally, with smoldering myeloma, most doctors do what is called "watchful waiting." The disease is monitored regularly to see whether there is progression that will require the commencement of treatment.
From what you have indicated, your husband has not started any actual treatment for multiple myeloma. His doctor will see him again at the end of September and at that time will determine how to go forward.
What seems troubling is that many of your husband's test results are not within the normal ranges. In particular, the markers for kidney function are not normal. So, for example, his BUN, his creatinine, his calcium, and his GFR are not what they should be (his hemoglobin is also somewhat low) and his IgM is below normal. His light chains also are not normal.
All of these, in my opinion, whether they are related to myeloma or not, need to be addressed by a competent and knowledgeable physician. I, in your shoes, would not wait until the end of September. You are right to have made an appointment with your general practitioner. Present him with these test results and ask him what he makes of them.
I myself have been diagnosed with t(4;14), which puts me among intermediate / high risk myeloma patients. I am older than your husband, but I was not declared stem cell transplant ineligible largely because at the time of diagnosis I was pretty healthy. I would guess that kidney issues would discourage doctors from pursuing a SCT for your husband. If he has other health problems associated with his weight, that, too, would probably make him ineligible because the transplant is a grueling procedure for many people, putting a lot of stress on the body organs.
Not everyone with myeloma gets a stem cell transplant. I, for example, opted out of one, but perhaps in a few years will still qualify for one should it be deemed necessary. There is currently a lot of discussion about the efficacy of stem cell transplants in light of the novel drugs that have come into use in the last few years. Not getting a stem cell transplant is not necessarily the end of the world for your husband, if this is something that worries you greatly. The verdict is still out on transplants, that is, whether we need them or not.
Finally, you mention that your husband has developed a cough. This is a question that interests me personally because, since starting treatment nearly a year ago, I, too, have a bad cough. I, however, am on myeloma medications and my various specialists have yet to determine what the source of the cough is, although they are beginning to think that it is medication related.
Your husband is evidently not on myeloma meds, so the source of his cough may be elsewhere. It is possible, if he is on blood pressure medication, that that could be causing his cough. In any event, he needs to be examined by a doctor to make sure that his lungs are clear and that he does not have a respiratory disease. Acid reflux and/or post nasal drip are usually found to be the cause of chronic cough.
I am actually surprised that, with your husband's test results, more follow up has not already been called for by his doctors. You are his best advocate, so do not wait patiently for some appointment in the distant future. I, in your place, would act now to get to the bottom of things.
All the best to you and your husband.
Re: Will this smoldering multiple myeloma progress faster?
Mrozdav,
Thank you for answering with your thoughts on this! You are saying what I am thinking in regards to my husband's labs tests and how often his doctor has requested to see him. He also has a kidney doctor who only wants to see him in 10 months. All this is confusing to me, their reasoning.
I know the CRAB scoring for multiple myeloma, but if the kidneys get a lot worse, I would think it would make it harder to treat. I think his doctors believe that his kidneys are not a result of multiple myeloma, but if you look at his HGB numbers and light chains, I just do not understand their thinking. His M-spike is low at 0.8 g/dL, but for the last 15 months it had been steady at 0.7.
I will take his lab tests to his primary doctor's appointment this week, and see what he says. Oh, and yes I am worried about SCT because I have read about such good remissions with it, and if he cannot have aggressive therapy, I am afraid what his long term survival might be.
Thanks again!! Best of luck to you too, as you go through your treatments!
Thank you for answering with your thoughts on this! You are saying what I am thinking in regards to my husband's labs tests and how often his doctor has requested to see him. He also has a kidney doctor who only wants to see him in 10 months. All this is confusing to me, their reasoning.
I know the CRAB scoring for multiple myeloma, but if the kidneys get a lot worse, I would think it would make it harder to treat. I think his doctors believe that his kidneys are not a result of multiple myeloma, but if you look at his HGB numbers and light chains, I just do not understand their thinking. His M-spike is low at 0.8 g/dL, but for the last 15 months it had been steady at 0.7.
I will take his lab tests to his primary doctor's appointment this week, and see what he says. Oh, and yes I am worried about SCT because I have read about such good remissions with it, and if he cannot have aggressive therapy, I am afraid what his long term survival might be.
Thanks again!! Best of luck to you too, as you go through your treatments!
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Will this smoldering multiple myeloma progress faster?
Ward211,
There are a lot of people who are diagnosed with late stage myeloma after complaining for months about various symptoms which the doctors do not initially connect to myeloma. Many of these people present with severe kidney disease at the time of actual late stage diagnosis. It would appear, at first blush, that their situations are hopeless, and yet they are able to receive appropriate therapy for their myeloma, to the extent that they are even brought to complete remission.
I have read about such people here in this forum. In addition, a friend of mine who was diagnosed with myeloma a month before I was, presented with near kidney failure. Nearly all her body organs were shutting down. Practically at death's door, as she put it, she was given appropriate therapy, and now she is in a very good remission even without a stem cell transplant.
So, you should not despair for your husband. If he is in good hands, he will be helped. The most important thing is for him to get a good myeloma specialist who takes charge of his case and is willing and able to explain to the two of you exactly what you are facing and how he wants you to proceed. You are probably aware that in the Phoenix area there is the Mayo Clinic and they have a number of reputed myeloma specialists there. You have mentioned something about M.D. Anderson in one of your posts, but, unfortunately, I know nothing about M.D. Anderson in the Phoenix area.
There are a lot of people who are diagnosed with late stage myeloma after complaining for months about various symptoms which the doctors do not initially connect to myeloma. Many of these people present with severe kidney disease at the time of actual late stage diagnosis. It would appear, at first blush, that their situations are hopeless, and yet they are able to receive appropriate therapy for their myeloma, to the extent that they are even brought to complete remission.
I have read about such people here in this forum. In addition, a friend of mine who was diagnosed with myeloma a month before I was, presented with near kidney failure. Nearly all her body organs were shutting down. Practically at death's door, as she put it, she was given appropriate therapy, and now she is in a very good remission even without a stem cell transplant.
So, you should not despair for your husband. If he is in good hands, he will be helped. The most important thing is for him to get a good myeloma specialist who takes charge of his case and is willing and able to explain to the two of you exactly what you are facing and how he wants you to proceed. You are probably aware that in the Phoenix area there is the Mayo Clinic and they have a number of reputed myeloma specialists there. You have mentioned something about M.D. Anderson in one of your posts, but, unfortunately, I know nothing about M.D. Anderson in the Phoenix area.
Re: Will this smoldering multiple myeloma progress faster?
Mrozdav,
Thanks, that helps to hear that others have had similar issues and with treatment are doing good!
You ask about MD Anderson. It is a newer cancer medical center. It's full name is Banner MD Anderson Medical Center. It opened up about 4 or 5 years ago. We did do a consult with the Mayo Clinic! We really liked them, but they are a lot farther away from us and insurance only pays 60% of costs! If we do not get the care we need at MD Anderson, I am not afraid to switch. I just want him to get the care he needs! I hope the doctor this week can help us out!
Thanks again. It helps to talk, and you have given me some hope and some things to check on!
Doris
Thanks, that helps to hear that others have had similar issues and with treatment are doing good!
You ask about MD Anderson. It is a newer cancer medical center. It's full name is Banner MD Anderson Medical Center. It opened up about 4 or 5 years ago. We did do a consult with the Mayo Clinic! We really liked them, but they are a lot farther away from us and insurance only pays 60% of costs! If we do not get the care we need at MD Anderson, I am not afraid to switch. I just want him to get the care he needs! I hope the doctor this week can help us out!
Thanks again. It helps to talk, and you have given me some hope and some things to check on!
Doris
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Will this smoldering multiple myeloma progress faster?
My husband has not had any more BMB or bone scan since his SMM diagnosis in December 2013. It has been just labs and wait and watch! I would love to hear from others else being treated out here who they recommended as doctor and best place for treatment! We went to MD Anderson, and they set us up with the doctor we got. He has only been with them two years. He is a fairly young doctor who is a specialist in blood disorders. I am not sure if this makes him a specialist in multiple myeloma.
I know I still have lots of questions I am just trying to make sure we are doing things the right way, and getting the right doctor and treatment when he needs them, and I want to make sure that we are not overlooking any problems as we go. I want him to have the best chance of long-term survival and quality care!
Thanks everyone! I really have learned so much from Beacon forum, and hope to learn lots more.
I know I still have lots of questions I am just trying to make sure we are doing things the right way, and getting the right doctor and treatment when he needs them, and I want to make sure that we are not overlooking any problems as we go. I want him to have the best chance of long-term survival and quality care!
Thanks everyone! I really have learned so much from Beacon forum, and hope to learn lots more.
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
Re: Will this smoldering multiple myeloma progress faster?
Ward211,
Just out of curiosity: You indicate above that your husband is IgG kappa, and yet, his IgG appears well within normal range (while his IgM is below normal). Has anyone explained to you why the IgG is normal? I find this bizarre, but maybe I just do not know enough about immunoglobulins.
Just out of curiosity: You indicate above that your husband is IgG kappa, and yet, his IgG appears well within normal range (while his IgM is below normal). Has anyone explained to you why the IgG is normal? I find this bizarre, but maybe I just do not know enough about immunoglobulins.
Re: Will this smoldering multiple myeloma progress faster?
Now that you mention that ( my husband's IgG is with In normal limits and his IgM is low) I started
Checking and it has always been that way. No one has explained that to us or even mentioned it.
Now you have me wondering what that means. Yes, they told us that he was IgG Kapppa! I would love to hear what others think about this! Is this normal, and does any one else have this, what does that mean!
Checking and it has always been that way. No one has explained that to us or even mentioned it.
Now you have me wondering what that means. Yes, they told us that he was IgG Kapppa! I would love to hear what others think about this! Is this normal, and does any one else have this, what does that mean!
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Ward211 - Name: Doris Warner
- Who do you know with myeloma?: My husband Gary
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 63
9 posts
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