In 2012, my husband was diagnosed with Stage III multiple myeloma (bone affected). After 6 months on VRD (Velcade, Revlimid, and dex) he had an ASCT (autologous stem cell transplant). It went very well even though he did not reach complete remission.
As of October 2013 (100 days after SCT) he is on maintenance (Revlimid & dex, VRD dose), but his serum free kappa light chain level keeps creeping up every month. For example,
July, 2014: Kappa 35.6, Lambda 14.0, Ratio 2.40
Aug, 2014: Kappa 38.9, Lambda 12.9, Ratio 3.02
My husband's specialist does not seem to be concern. He said my husband is still in remission. However, should I be concern with this trend (though incremental)? Is this leading to a relapse?
Additionally, last month he had vision problem (first time). His left pupil was bulging and right pupil was rolled upward, which resulted in double vision. He couldn't walk without my assistance, or had to cover one eye.
He saw an ophthalmologist who said there were no signs of a tumor or bleeding, and an MRI ruled out a stroke. Also, a blood test ruled out hyperviscosity syndrome. After a few days, his vision was back to normal, but he said he still has slight double vision (only peripherally) in the left eye.
Has anyone had this type of vision problem?
I need answers since I fear it will happen again, because this symptom came on suddenly.
Thank you all for your input.
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Joey Caregiver - Name: Yvonne Sparkes
- Who do you know with myeloma?: Mate
- When were you/they diagnosed?: 2012
- Age at diagnosis: 57
Re: Kappa light chains rising & double vision
A couple things to discuss.
First, the increase in light chain levels is very subtle. I would call it stable, really unchanged. This amount of change may be from lab variability as much as any change in disease status.
In addition, the level of your husband's kappa light chain, while above the reference range, is by no means high for someone with myeloma. (I do not know what these recent results are relative to what they were at diagnosis.)
Time will tell us what is going on in this case.
Responses are defined by the International Myeloma Working Group as follows:
Regarding the change in vision - This, to me, is a larger deal. Your husband had frank cranial nerves palsies. The cranial nerves includes those that control the eye muscles, among other things). The major things to consider are tumors, strokes, and, rarely, these issues have been observed in patients with diabetes (for reasons that I am not altogether clear on).
Of note, hyperviscosity would seem unlikely in the setting of your husband's disease control and the fact that the physical exam findings were so focal in nature. It's still something important to check, though.
Without knowing what work up was carried out, has your husband been seen by a neurologist? Did the MRI of the brain have contrast? The vision problems you described are pretty significant neurological symptoms. You may wish to get a second opinion if a cause for the symptoms has not been defined.
First, the increase in light chain levels is very subtle. I would call it stable, really unchanged. This amount of change may be from lab variability as much as any change in disease status.
In addition, the level of your husband's kappa light chain, while above the reference range, is by no means high for someone with myeloma. (I do not know what these recent results are relative to what they were at diagnosis.)
Time will tell us what is going on in this case.
Responses are defined by the International Myeloma Working Group as follows:
- Partial Response: >50% reduction in M-spike,
- Very Good Partial Response: >90% decrease
- Complete Response: No M-spike by SPEP or IFE and negative marrow malignant plasma cells
- Stringent Complete Response: Same as CR + normalized SFLC ratio + negative urine.
Regarding the change in vision - This, to me, is a larger deal. Your husband had frank cranial nerves palsies. The cranial nerves includes those that control the eye muscles, among other things). The major things to consider are tumors, strokes, and, rarely, these issues have been observed in patients with diabetes (for reasons that I am not altogether clear on).
Of note, hyperviscosity would seem unlikely in the setting of your husband's disease control and the fact that the physical exam findings were so focal in nature. It's still something important to check, though.
Without knowing what work up was carried out, has your husband been seen by a neurologist? Did the MRI of the brain have contrast? The vision problems you described are pretty significant neurological symptoms. You may wish to get a second opinion if a cause for the symptoms has not been defined.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Kappa light chains rising & double vision
Does the double vision go away when he covers one eye?
If so, your husband most likely had a fourth nerve palsy in the right eye (cranial nerve IV [four] controls one of six eye muscles which keeps them straight and aligned). That particular nerve is very susceptible to trauma and ischemia (lack of blood flow), which doesn't always show up on an MRI. If the right eye is affected, the double vision will be worse when he looks to the left.
As long as tumors, thyroid disease and aneurysms have been ruled out, these palsies usually resolve on their own in 90 to 120 days.
Hope this helps!
If so, your husband most likely had a fourth nerve palsy in the right eye (cranial nerve IV [four] controls one of six eye muscles which keeps them straight and aligned). That particular nerve is very susceptible to trauma and ischemia (lack of blood flow), which doesn't always show up on an MRI. If the right eye is affected, the double vision will be worse when he looks to the left.
As long as tumors, thyroid disease and aneurysms have been ruled out, these palsies usually resolve on their own in 90 to 120 days.
Hope this helps!
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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
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