Hi all,
My husband was diagnosed in April 2015 and received Revlimid, Velcade, and dexamethasone (RVD) for a few cycles. Although he stopped induction early due to neuropathy, his M-spike went to zero for about 8 months. His M-spike has been very slowly creeping up over the past 7-8 months, and is now at 0.75 g/dL (7.5 g/l). Right now, we are just continuing with his Revlimid and dexamethasone maintenance and just watching and waiting before determining what may be next.
I indicated to him that this was just a biochemical relapse and not a symptomatic relapse and that his M-spike was still quite low, so that it was fair to say that the monoclonal protein was not causing any further damage at this early stage of what we presume is a relapse.
Knowing, however, that his multiple myeloma presented with, and was discovered after, significant bone damage, my husband asked me how would we know that the multiple myeloma is not causing further bone damage. He is naturally concerned because he still experiences significant bone pain and neuropathy. I suggested that his blood work would show some abnormalities if there was end-organ damage going on (most of his relevant markers from CBC and metabolic panel are within normal range) . He asked me which results, and I thought his serum calcium (which is normal) would be high if that were the case.
But now I think I am wrong, high calcium is a sign of kidney damage, not bone damage? So, he has had one skeletal survey (about 3 months ago) which showed some lucencies and old lesions (we were told these are artifacts). He hasn't ever had a PET scan.
So, how does the doctor know without a PET scan that the monoclonal protein is not causing any further bone damage? Is it because the M-spike is still low? Is there a result we would look to in his blood work that would indicate ongoing bone damage? Or is a skeletal survey in recent months sufficient? He also has had monthly Zometa since diagnosis.
Thank you all for your insight and knowledge and anything you can offer. I'm trying to offer him some reassurance.
Laurie
Forums
5 posts
• Page 1 of 1
-
lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Does bone damage from myeloma show up in blood work?
Hi Laurie,
Maybe your husband’s maintenance therapy dose is too low, indicated by rising pain level and M-spike.
I was diagnosed in April 2015 and my bone pain levels had steadily decreased until just now. I had been on 3 mg of Ninlaro (ixazomib) for 7 months and for past 2 months dropped it to a 2.3 mg pill of Ninlaro and a 4 mg pill of dex and the pain was still low.
But when I accidentally missed 2 weeks of treatment (by not having my monthly supply of replacement pills available in time), I noticed my bone pain level increased in areas of my body that had lesions (ribs, spine, and hip), even with my all blood test lab numbers in the normal range. As soon as I took the pills, my bone pain went away within hours.
This make me suspect the pain is coming from localized areas of active myeloma, most likely in old lesions, but not widespread in the blood stream, which might show up in a blood test. I have a PET scan scheduled, but I am going to wait and see if the pain subside by the third week in the current cycle. If it does not, I am going to increase the dose of Ninlaro back to 3 mg, which was the Ninlaro maintenance level in which I had no lesion pain.
Maybe your husband’s maintenance therapy dose is too low, indicated by rising pain level and M-spike.
I was diagnosed in April 2015 and my bone pain levels had steadily decreased until just now. I had been on 3 mg of Ninlaro (ixazomib) for 7 months and for past 2 months dropped it to a 2.3 mg pill of Ninlaro and a 4 mg pill of dex and the pain was still low.
But when I accidentally missed 2 weeks of treatment (by not having my monthly supply of replacement pills available in time), I noticed my bone pain level increased in areas of my body that had lesions (ribs, spine, and hip), even with my all blood test lab numbers in the normal range. As soon as I took the pills, my bone pain went away within hours.
This make me suspect the pain is coming from localized areas of active myeloma, most likely in old lesions, but not widespread in the blood stream, which might show up in a blood test. I have a PET scan scheduled, but I am going to wait and see if the pain subside by the third week in the current cycle. If it does not, I am going to increase the dose of Ninlaro back to 3 mg, which was the Ninlaro maintenance level in which I had no lesion pain.
-
Bob_D - Name: Bob_D
- Who do you know with myeloma?: me
- When were you/they diagnosed?: March 2015
- Age at diagnosis: 59
Re: Does bone damage from myeloma show up in blood work?
Laurie,
High calcium in the blood is a sign of bone damage. The usual test to measure kidney function is the creatinine level in the serum. It is true that high calcium levels can damage the kidneys, but the high calcium is not caused by kidney failure per se. The kidneys can be overwhelmed by excess calcium, which can lead to failure.
If your husband was having peripheral neuropathy due to Velcade, perhaps you should discuss with his oncologist trying Kyprolis instead. It, like Velcade, is also a proteasome inhibitor, but generally has not been associated with neuropathy.
High calcium in the blood is a sign of bone damage. The usual test to measure kidney function is the creatinine level in the serum. It is true that high calcium levels can damage the kidneys, but the high calcium is not caused by kidney failure per se. The kidneys can be overwhelmed by excess calcium, which can lead to failure.
If your husband was having peripheral neuropathy due to Velcade, perhaps you should discuss with his oncologist trying Kyprolis instead. It, like Velcade, is also a proteasome inhibitor, but generally has not been associated with neuropathy.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Does bone damage from myeloma show up in blood work?
I would add to Ron's great comments by simply mentioning that while a high calcium level can certainly suggest bone damage, it is not a reliable marker in this regard. I don't believe that there is really any current substitute for ongoing imaging to determine if one is suffering from new bone damage or not. Also, remember that one can be in complete biochemical remission and still develop new lytic lesions.
Coleman, RE, "The clinical use of bone resorption markers in patients with malignant bone disease," Cancer, May 2002 (full text of article)
Excerpt:
"The calcium/creatinine ratio in an early morning urine sample after an overnight fast has been shown to be a reproducible method of quantifying calcium excretion, and calcium excretion has been reported to be a useful marker of therapeutic response in patients with osteolytic bone lesions. However, studies have demonstrated that in unselected groups of patients with bone metastases urinary calcium was not found to be increased significantly compared with controls or patients without bone metastases, and there was no apparent correlation between urinary calcium and clinical findings or response to bisphosphonate treatment. Moreover, calcium excretion is affected by diet, renal function, uptake into bone, and circulating levels of parathyroid hormone and parathyroid hormone-related protein"
As far as what kind of imaging to use for ongoing monitoring, I think that is a difficult choice (at least it was for me). Nothing beats a PET/CT, but they incur a lot of radiation exposure and are expensive. Whole-body MRIs are also wonderful and incur no radiation exposure, but few of them exist in the world (none in Colorado). Skeletal surveys do an OK job and will pick up on obvious problems and will only incur a modest amount of radiation in comparison to a PET/CT. Skeletal surveys are also relatively inexpensive. Low-dose CTs are also an option, but don't cover all parts of your body.
So you may want to discuss some sort of imaging plan that involves alternating between skeletal surveys or low-dose CTs and another imaging mode such as a PET/CT (or whole body MRI, if available to you).
If you haven't yet seen this article about PET scans and other imaging for multiple myeloma by Dr. Kapoor, it's worth a read.
Coleman, RE, "The clinical use of bone resorption markers in patients with malignant bone disease," Cancer, May 2002 (full text of article)
Excerpt:
"The calcium/creatinine ratio in an early morning urine sample after an overnight fast has been shown to be a reproducible method of quantifying calcium excretion, and calcium excretion has been reported to be a useful marker of therapeutic response in patients with osteolytic bone lesions. However, studies have demonstrated that in unselected groups of patients with bone metastases urinary calcium was not found to be increased significantly compared with controls or patients without bone metastases, and there was no apparent correlation between urinary calcium and clinical findings or response to bisphosphonate treatment. Moreover, calcium excretion is affected by diet, renal function, uptake into bone, and circulating levels of parathyroid hormone and parathyroid hormone-related protein"
As far as what kind of imaging to use for ongoing monitoring, I think that is a difficult choice (at least it was for me). Nothing beats a PET/CT, but they incur a lot of radiation exposure and are expensive. Whole-body MRIs are also wonderful and incur no radiation exposure, but few of them exist in the world (none in Colorado). Skeletal surveys do an OK job and will pick up on obvious problems and will only incur a modest amount of radiation in comparison to a PET/CT. Skeletal surveys are also relatively inexpensive. Low-dose CTs are also an option, but don't cover all parts of your body.
So you may want to discuss some sort of imaging plan that involves alternating between skeletal surveys or low-dose CTs and another imaging mode such as a PET/CT (or whole body MRI, if available to you).
If you haven't yet seen this article about PET scans and other imaging for multiple myeloma by Dr. Kapoor, it's worth a read.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Does bone damage from myeloma show up in blood work?
Thank you all for these really helpful responses.
I would like to clarify that his bone pain is not increasing. It's been the same since getting the myeloma under control and starting Zometa (late summer 2015). But, he's also taking a number of pain meds, so I don't know if those would mask new or worsening lesions.
We have not yet discussed increasing the maintenance Revlimid. I will ask about that at our next appointment, to see if that will reverse or further slow the M-spike progression. It seems to make sense to give that a try since he is tolerating Revlimid and dexamethasone well.
Thank you for the information on serum calcium. So I was sort of correct! I think because all his blood work, except for the proteins, is normal, this is why the doctor hasn't ordered any additional scans. Maybe I should just ask for a urine calcium test next time as a start.
Also, thank you, Multibilly, for the link to Dr. Kapoor's post. That was very helpful and directly addressed my question about scans.
I am very grateful to you all for helping answer some of our questions.
Laurie
I would like to clarify that his bone pain is not increasing. It's been the same since getting the myeloma under control and starting Zometa (late summer 2015). But, he's also taking a number of pain meds, so I don't know if those would mask new or worsening lesions.
We have not yet discussed increasing the maintenance Revlimid. I will ask about that at our next appointment, to see if that will reverse or further slow the M-spike progression. It seems to make sense to give that a try since he is tolerating Revlimid and dexamethasone well.
Thank you for the information on serum calcium. So I was sort of correct! I think because all his blood work, except for the proteins, is normal, this is why the doctor hasn't ordered any additional scans. Maybe I should just ask for a urine calcium test next time as a start.
Also, thank you, Multibilly, for the link to Dr. Kapoor's post. That was very helpful and directly addressed my question about scans.
I am very grateful to you all for helping answer some of our questions.
Laurie
-
lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
5 posts
• Page 1 of 1