In 2013 my wife was declined life insurance based on test results. Long story short, after additional testing, she was told she has MGUS. The bone marrow biopsy (BMB) showed 12% and her kappa light chains were at 443. This is the starting point. She has no bone involvement and minimal symptoms other than being very tired.
After following this every 3 months, the kappa number continued to grow. In March of this year when her kappa hit 791 and a follow-up BMB showed 15%, they decided to start treatment. The results from this day are as follows.
CBC Percentages
Neutr Percent 65.2
Basos Percent 0.5
Lymph Percent 26.1
Monos Percent 6.4
Eos Percent 1.8
Liver Profile
T. Protein 6.2
Albumin 3.8
Total Bilirubin 0.7
CBC
WBC 4.8
RBC 3.7
HGB 12.3
HCT 35.4
PLT 224
Ig Quant
IgA 30
IgG 320
IgM 23
Renal / Metabolic Profile
BUN 12.0
Creatinine 0.8
Calcium 8.6
BUN/Cr Ratio 15
Chem Panel
Sodium 142
Potassium 4.0
Chloride 104
CO2 31
Glucose 88
Freelite
Lambda FLC 5.20
Kappa FLC 791.66
K/L Ratio 791.66
We proceeded with 4 cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD) and measured the free light chains at the end of each cycle. The plan was to do 4 cycles and then transplant.
May 08 2015 Kappa after 1 cycle 420.46
Jun 05 2015 Kappa after cycle 2 was 319.35
Jul 02 2015 Kappa after cycle 3 was 252.33
Jul 28 2015 Kappa after cycle 4 was 385.74
Jul 28 2015 BMB tested and has gone up to 18%.
The last two tests were done 1 week after the last treatment.
Now the doctors feel the treatment was not working and we should take a watch and wait approach. This just does not seem right to me. We have since done 2 more tests with the following results.
Aug 06 2015 Kappa up to 527.43
Aug 21 2015 Kappa up again to 569.56 (full test results as follows)
CBC Percentages
Neutr Percent 73.6
Basos Percent 1.0
Lymph Percent 13.7
Monos Percent 10.4
Eos Percent 1.3
Liver Profile
T. Protein 6.3
Albumin 3.8
Total Bilirubin 1.0
CBC
WBC 3.3
RBC 3.5
HGB 11.5
HCT 34.9
PLT 189
Ig Quant
IgA <15
IgG 243
IgM 15
Renal/ Metabolic Profile
BUN 10.0
Creatinine 0.8
Calcium 8.6
BUN/Cr Ratio 13
Chem Panel
Sodium 140
Potassium 4.1
Chloride 104
CO2 29
Glucose 94
Freelite
Lambda FLC 1.46
Kappa FLC 569.56
K/L Ratio 569.56
Sorry this is so long, but I really want to see what others think about this. I am concerned the light chains being so high are going to cause trouble soon.
Forums
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jeffpfohl - Name: jeffpfohl
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 2014
- Age at diagnosis: 46
Re: Watch and wait ... really?
Hmmm.
I'm assuming that this is a case of light chain multiple myeloma and that there is no M-spike that is being tracked?
Are you still planning a transplant soon, and is that what your doctors are contemplating during this "watch and wait" period? What did your docs tell you they were "waiting" for?
What specific chromosomal abnormalities is your wife dealing with, if any?
Based on the K/L ratio, it does seem like the treatment response was starting to falter in the last cycle, so a change seems like it might be warranted. But I'm a bit surprised that the docs just stopped there with such a high K/L ratio and without changing up the drugs and/or dosage. There is a case that is sometimes made to not try and overtreat during induction just for the sake of getting the best response possible prior to transplant, but I don't think I've ever heard of a watch-and-wait drug holiday between induction and a planned transplant, especially with such high markers. But I'm also not a doc....
The big question I have is: Are you working with a top multiple myeloma specialist on this (not just an onc that might have some multiple myeloma patients in his/her practice)? I might be looking for a second opinion from a multiple myeloma specialist under the circumstances. If you are in Dallas, I might suggest a road trip to MD Anderson in Houston.
I'm assuming that this is a case of light chain multiple myeloma and that there is no M-spike that is being tracked?
Are you still planning a transplant soon, and is that what your doctors are contemplating during this "watch and wait" period? What did your docs tell you they were "waiting" for?
What specific chromosomal abnormalities is your wife dealing with, if any?
Based on the K/L ratio, it does seem like the treatment response was starting to falter in the last cycle, so a change seems like it might be warranted. But I'm a bit surprised that the docs just stopped there with such a high K/L ratio and without changing up the drugs and/or dosage. There is a case that is sometimes made to not try and overtreat during induction just for the sake of getting the best response possible prior to transplant, but I don't think I've ever heard of a watch-and-wait drug holiday between induction and a planned transplant, especially with such high markers. But I'm also not a doc....
The big question I have is: Are you working with a top multiple myeloma specialist on this (not just an onc that might have some multiple myeloma patients in his/her practice)? I might be looking for a second opinion from a multiple myeloma specialist under the circumstances. If you are in Dallas, I might suggest a road trip to MD Anderson in Houston.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Watch and wait ... really?
Multibilly thanks for the response
This is a case of kappa light chain multiple myeloma and for the most part she shows no M-spike.
It was the transplant specialist that made the watch-and-wait decision. I think he is concerned that we could be over treating since she still shows no major symptoms like kidney or bone issues. He wanted to wait 4 months and see what the numbers do while not being treated.
We have an additional chromosomal but have been told this abnormality is a positive thing. I forget the exact chromosome addition.
I agree things started to fail the last cycle, but I think they may have overreacted. I was expecting a change in treatment but not a stoppage.
Our hem/onc is well versed in myeloma and the transplant doc seems to be one of the best in the area. We are in the Dallas treatment area. I have also been thinking about a second opinion.
We have an appointment tomorrow afternoon to talk with him. I am hoping this post may give me some ideas and questions for him.
This is a case of kappa light chain multiple myeloma and for the most part she shows no M-spike.
It was the transplant specialist that made the watch-and-wait decision. I think he is concerned that we could be over treating since she still shows no major symptoms like kidney or bone issues. He wanted to wait 4 months and see what the numbers do while not being treated.
We have an additional chromosomal but have been told this abnormality is a positive thing. I forget the exact chromosome addition.
I agree things started to fail the last cycle, but I think they may have overreacted. I was expecting a change in treatment but not a stoppage.
Our hem/onc is well versed in myeloma and the transplant doc seems to be one of the best in the area. We are in the Dallas treatment area. I have also been thinking about a second opinion.
We have an appointment tomorrow afternoon to talk with him. I am hoping this post may give me some ideas and questions for him.
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jeffpfohl - Name: jeffpfohl
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 2014
- Age at diagnosis: 46
Re: Watch and wait ... really?
My own opinion is that a second opinion is a really good idea if you're really not comfortable with your doctor's approach. Assuming your insurance will cover it and that you won't have to go too far to get it, then it shouldn't be a significant inconvenience and it may give you much greater peace of mind.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Watch and wait ... really?
I don't know what to suggest other than a second opinion. Again, MD Anderson has some top-notch myeloma specialists and they also contribute comments to this forum. I haven't personally been down this path as I am still smoldering, so I will defer to those that have been through all this on the forum.
This is the article that I had in the back of my mind regarding "induction overtreatment" with respect to transplants:
"Additional Treatment To Deepen Response Prior To Transplantation May Not Improve Survival In Newly Diagnosed Multiple Myeloma," The Myeloma Beacon, March 23, 2015
This is the article that I had in the back of my mind regarding "induction overtreatment" with respect to transplants:
"Additional Treatment To Deepen Response Prior To Transplantation May Not Improve Survival In Newly Diagnosed Multiple Myeloma," The Myeloma Beacon, March 23, 2015
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Watch and wait ... really?
Your wife's condition sounds very similar to mine. Kappa light chain, chromosome addition, no bone involvement, extremely minimal M spike. However, I only have 1 kidney and it was being hit pretty hard by the excess protein.
My induction treatment consisted of Velcade and dex (basically the BorD portion of CyBorD), which worked quite well until I started leveling off, at which point they added 25 mg Revlimid, which pretty much did the trick. Although I didn't reach complete remission, they went ahead with my SCT shortly thereafter. That was almost 2 years ago.
It's interesting that they want to wait. Perhaps they want to give her system a rest before trying something else, since she's in no immediate danger. As the others have suggested, though, I would get a second opinion straight from a myeloma specialist, if for no other reason than peace of mind.
My induction treatment consisted of Velcade and dex (basically the BorD portion of CyBorD), which worked quite well until I started leveling off, at which point they added 25 mg Revlimid, which pretty much did the trick. Although I didn't reach complete remission, they went ahead with my SCT shortly thereafter. That was almost 2 years ago.
It's interesting that they want to wait. Perhaps they want to give her system a rest before trying something else, since she's in no immediate danger. As the others have suggested, though, I would get a second opinion straight from a myeloma specialist, if for no other reason than peace of mind.
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Blackbird - Name: Rick Crow
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb, 2013
- Age at diagnosis: 53
Re: Watch and wait ... really?
I would get a second opinion until you feel comfortable. (I got 3 opinions) As far as overtreating, I asked my doctor the same thing because I have no CRAB and normal FISH. He strongly feels that you should not wait until end organ damage ... treat before that happens.
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Watch and wait ... really?
Not to pile on here, but...
It does appear that your wife probably still has one of the CRAB symptoms at this stage - anemia, since the 11.5 HGB would be considered abnormally low (assuming the same measurement standards as used in my labs).
So I agree with other folks in suggesting that you and your wife consider getting a second opinion from a myeloma specialist.
Mike
It does appear that your wife probably still has one of the CRAB symptoms at this stage - anemia, since the 11.5 HGB would be considered abnormally low (assuming the same measurement standards as used in my labs).
So I agree with other folks in suggesting that you and your wife consider getting a second opinion from a myeloma specialist.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Watch and wait ... really?
Mikeb
You are correct, she is anemic, and is also showing a low B12 level. I forgot to mention this in my original post.
She also is battling a recurring bouts of pleurisy and has pain in her knees and joints. I am not sure that these things have anything to do with the myeloma.
I appreciate all the input from the members of this group.
You are correct, she is anemic, and is also showing a low B12 level. I forgot to mention this in my original post.
She also is battling a recurring bouts of pleurisy and has pain in her knees and joints. I am not sure that these things have anything to do with the myeloma.
I appreciate all the input from the members of this group.
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jeffpfohl - Name: jeffpfohl
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: 2014
- Age at diagnosis: 46
Re: Watch and wait ... really?
Watch and wait makes sense to me in that you're in your very first phase of treatment and, secondly, 4 cycles of CyborD is not a lot of cycles. However, the chemo continues to work for a period of time and, based on my experience, even though the treatment had stopped (better to say been temporarily suspended) to see in your next blood labs continued improving numbers to a greater extent than you had seen while on treatment.
Or even if the numbers have not dropped to your satisfaction, you might have been able to create a plateau whereby your numbers just hold steady where they are, and that they are low enough to continue to be concerned about but able to suspend treatment until the numbers took a big or rapid increase in a short amount of time. Then you would most likely resume treatment with a new drug regimen.
But your doctor's treatment plan makes sense to me. There is and will be plenty of chemo time in your future, unfortunately treatment will never be out of your life again. So enjoy these little breaks and know that they help you more than you can know at this point in your treatment. They are a gift.
Or even if the numbers have not dropped to your satisfaction, you might have been able to create a plateau whereby your numbers just hold steady where they are, and that they are low enough to continue to be concerned about but able to suspend treatment until the numbers took a big or rapid increase in a short amount of time. Then you would most likely resume treatment with a new drug regimen.
But your doctor's treatment plan makes sense to me. There is and will be plenty of chemo time in your future, unfortunately treatment will never be out of your life again. So enjoy these little breaks and know that they help you more than you can know at this point in your treatment. They are a gift.
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JonEman
17 posts
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