Rneb,
You are mixing up M-Spikes with bone plasma percentage. They are two very different measurements. M-spike is a value measurement of the monoclonal protein in one's serum as measured by an SPEP (expressed as an absolute value, not as a percentage). Bone marrow plasma percentage is just that ... a percentage of the plasma cells in one's bone marrow as measured by a bone marrow biopsy.
A 10% bone plasma percentage reading is the minimum percentage to qualify for smoldering multiple myeloma. I'm smoldering and I'm a at 11% bone marrow plasma percentage with an M-Spike of ~ 2 g/dL (and no CRAB). Barbara would need to also have one or more CRAB(I) symptoms to be considered symptomatic.
To be clear, per the IMWG:
http://myeloma.org/ArticlePage.action?articleId=2970
Diagnostic Criteria: All Three Required
Symptomatic multiple myeloma:
#1 Monoclonal plasma cells in the bone marrow >/=10% and/or presence of a biopsy-proven plasmacytoma
#2 Monoclonal protein present in the serum and/or urine*
#3 Myeloma-related organ dysfunction (>/=1)c
[C] Calcium elevation in the blood (serum calcium >10.5 mg/l or upper limit of normal
[R] Renal insufficiency (serum creatinine >2mg per 100 ml)
[A] Anemia (hemoglobin <10 g per 100 ml or 2 g <normal)
[B] Lytic bone lesions or osteoporosis
*If no monoclonal protein is detected (non-secretory disease), then >/= 30% monoclonal bone marrow plasma cells and/or a biopsy-proven plasmacytoma required.
Forums
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
M-Billy:
Methinks you are stuck in " guidelines hell" --despite this being a "Variable" disease...In both presentation and response. Maybe it's your "Hope against hope", .....as the alternative is not very ....palatable.
The Forums and other places are full of people with Lesions, ....and yet presenting with low/no appreciable proteins...and low if any, M-Spike. There is sometimes NO Correlation, per the guidelines. ( International Group, et al)
I was considered to be just potentially "Smoldering"--yet I had two suspected lesions / tumors....including one the size of a Walnut ( Aerodigestive). Pathology read mine several times, just to be sure. I also fought the diagnosis, based upon the serological data.
Sorry to pop your Guidelines "Bubble"--but atypical multiple myeloma often presents in this fashion.
Methinks you are stuck in " guidelines hell" --despite this being a "Variable" disease...In both presentation and response. Maybe it's your "Hope against hope", .....as the alternative is not very ....palatable.
The Forums and other places are full of people with Lesions, ....and yet presenting with low/no appreciable proteins...and low if any, M-Spike. There is sometimes NO Correlation, per the guidelines. ( International Group, et al)
I was considered to be just potentially "Smoldering"--yet I had two suspected lesions / tumors....including one the size of a Walnut ( Aerodigestive). Pathology read mine several times, just to be sure. I also fought the diagnosis, based upon the serological data.
Sorry to pop your Guidelines "Bubble"--but atypical multiple myeloma often presents in this fashion.
-
Rneb
Re: Doctor does not want to treat me - is that common?
RNEB,
I'm sorry, but we simply aren't on the same page. If you have lesions or tumors attributable to multiple myeloma, then you are indeed symptomatic ... no argument (and the IMWG guidelines, etc back that up). But Barbara doesn't have lesions or tumors or any CRAB (or I) associated with multiple myeloma that she has mentioned.
The doctor (or Barbara) needs to provide some solid reason as to why the diagnosis of active multiple myeloma has been applied, as opposed to that of a smoldering multiple myeloma diagnosis. I haven't seen anything in her thread to suggest the reason for her being classified as symptomatic.
At this point, I will leave it to others on the forum to comment further, since I really don't want to get into an argument over what constitutes "symptomatic multiple myeloma" (loosely or officially).
I'm sorry, but we simply aren't on the same page. If you have lesions or tumors attributable to multiple myeloma, then you are indeed symptomatic ... no argument (and the IMWG guidelines, etc back that up). But Barbara doesn't have lesions or tumors or any CRAB (or I) associated with multiple myeloma that she has mentioned.
The doctor (or Barbara) needs to provide some solid reason as to why the diagnosis of active multiple myeloma has been applied, as opposed to that of a smoldering multiple myeloma diagnosis. I haven't seen anything in her thread to suggest the reason for her being classified as symptomatic.
At this point, I will leave it to others on the forum to comment further, since I really don't want to get into an argument over what constitutes "symptomatic multiple myeloma" (loosely or officially).
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Doctor does not want to treat me - is that common?
Her treating oncologist, who diagnosed her as having Multiple Myeloma and thus suggested chemo-- and not "Smoldering" Myeloma. (Observation)
I think he is in the best position to make the call.
I think he is in the best position to make the call.
-
Rneb
Re: Doctor does not want to treat me - is that common?
Multibilly,
I will be asking my oncologist the question of why it was I was diagnosed as multiple myeloma instead of smoldering. When I asked him once before, he said it was because I was over the 10% limit for the bone morrow test, but in the meantime I have heard that is not always the most accurate test and it is colored by where they take the bone morrow from.
Since I have no "CRAB" & no symptoms was why I wanted to go the alternative route to begin with.
Will let you know what I come up with on the 3rd.
I will be asking my oncologist the question of why it was I was diagnosed as multiple myeloma instead of smoldering. When I asked him once before, he said it was because I was over the 10% limit for the bone morrow test, but in the meantime I have heard that is not always the most accurate test and it is colored by where they take the bone morrow from.
Since I have no "CRAB" & no symptoms was why I wanted to go the alternative route to begin with.
Will let you know what I come up with on the 3rd.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
She mentions blood plasma level of just over 10%, but never mentions M-spike level. What might that number be?
-
steve1
Re: Doctor does not want to treat me - is that common?
Steve1,
M spike hovers around 2.47.
M spike hovers around 2.47.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
Many of you have asked about the anti malaria alternative med I am taking. It is called Artemisinin. I get it from Swanson Vitamins from Nutri Cology Labs. It costs about $35.00 for 90 pills and you take one or two a day depending on your size. I take only one.
It has no side effects except that it does cause my face to break out at times when I am on it. I read in one of the alternative med books that this does happen, at times, with people when the meds are fighting the cancer cells. Otherwise, there are no side effects for most.
It has no side effects except that it does cause my face to break out at times when I am on it. I read in one of the alternative med books that this does happen, at times, with people when the meds are fighting the cancer cells. Otherwise, there are no side effects for most.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Doctor does not want to treat me - is that common?
Barbara,
I have been Googling artemisinin and anti-malaria drugs on my lunch break and came up with quite a few hits that has me more interested. I see there are quite a few postings about anti-malaria drugs showing some effectiveness against myeloma, such as artesunate. I have seen Beacon articles in the last year that have captured my interest in the use of anti-malaria drugs to fight myeloma. I have not heard anyone say they were using them for treatment until now.
It is interesting that artemisinin is available without a prescription and is being sold by supplement stores. Is this the same thing that would be given to those with malaria? Is there a prescription strength or version of artemisinin that is different than what is being sold OTC in supplements stores? Anybody else know anything about this?
I did not see very much though on artemisinin specifically though for myeloma treatment. Do you or anyone else have any information artemisinin and myeloma?
I hope to see more on anti-malaria drugs and myeloma in the future, especially trials and studies that show how well they work or not, and I am hoping they do. These drugs seem to be pretty cheap and the information I have seen so far is they work well with other drugs, much like many myeloma therapies do.
If there is some evidence that artemisinin has anti-myeloma properties and is available without a prescription it seems like it could be another potential supplement we can add to our arsenal of drugs like curcumin that may help fight myeloma and buy a bit more time for us.
I have been Googling artemisinin and anti-malaria drugs on my lunch break and came up with quite a few hits that has me more interested. I see there are quite a few postings about anti-malaria drugs showing some effectiveness against myeloma, such as artesunate. I have seen Beacon articles in the last year that have captured my interest in the use of anti-malaria drugs to fight myeloma. I have not heard anyone say they were using them for treatment until now.
It is interesting that artemisinin is available without a prescription and is being sold by supplement stores. Is this the same thing that would be given to those with malaria? Is there a prescription strength or version of artemisinin that is different than what is being sold OTC in supplements stores? Anybody else know anything about this?
I did not see very much though on artemisinin specifically though for myeloma treatment. Do you or anyone else have any information artemisinin and myeloma?
I hope to see more on anti-malaria drugs and myeloma in the future, especially trials and studies that show how well they work or not, and I am hoping they do. These drugs seem to be pretty cheap and the information I have seen so far is they work well with other drugs, much like many myeloma therapies do.
If there is some evidence that artemisinin has anti-myeloma properties and is available without a prescription it seems like it could be another potential supplement we can add to our arsenal of drugs like curcumin that may help fight myeloma and buy a bit more time for us.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Doctor does not want to treat me - is that common?
Eric,
Artesunate is a derivative of artemisinin.
Artesuate is widely prescribed throughout the world and is the on the World Health Organization's list of Essential Medicines.
http://en.wikipedia.org/wiki/Artesunate
Artemisinin is indeed available OTC. See article from CDC below.
http://wwwnc.cdc.gov/eid/article/17/5/10-1532_article
"In 2009, one artemisinin-based combination therapy (artemether / lumefantrine) became available for use in the United States. However, it is not widely appreciated that artemisinin is actually available in the United States as an herbal supplement for over-the-counter purchase (2). It is marketed for general health maintenance and for treatment of parasitic infections and cancers".
As with curcumin and so many supplements, you can also find a lot of junk science claims made by supplement-selling quasi docs associated with this drug, so be selective with what you read
For those of you who may not have picked up on it before, the Beacon ran a great article on anti malarial drugs and multiple myeloma:
"The Neglected Common Thread: Malaria Drugs As Potential Myeloma Therapies," The Myeloma Beacon, July 12, 2014.
Artesunate is a derivative of artemisinin.
Artesuate is widely prescribed throughout the world and is the on the World Health Organization's list of Essential Medicines.
http://en.wikipedia.org/wiki/Artesunate
Artemisinin is indeed available OTC. See article from CDC below.
http://wwwnc.cdc.gov/eid/article/17/5/10-1532_article
"In 2009, one artemisinin-based combination therapy (artemether / lumefantrine) became available for use in the United States. However, it is not widely appreciated that artemisinin is actually available in the United States as an herbal supplement for over-the-counter purchase (2). It is marketed for general health maintenance and for treatment of parasitic infections and cancers".
As with curcumin and so many supplements, you can also find a lot of junk science claims made by supplement-selling quasi docs associated with this drug, so be selective with what you read
For those of you who may not have picked up on it before, the Beacon ran a great article on anti malarial drugs and multiple myeloma:
"The Neglected Common Thread: Malaria Drugs As Potential Myeloma Therapies," The Myeloma Beacon, July 12, 2014.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
22 posts
• Page 2 of 3 • 1, 2, 3
Return to Treatments & Side Effects