Ailsa,
That last thing I wanted to was to offend you in any way.
I thought you were commenting on my habit of trying to get specific details (specific lab values, test results, being exact about terminology, etc) out of folks so that folks on this forum can better help and educate those new to the forum. I thought you were making a comment that perhaps I sometimes go overboard when I do that. I do the same thing in my work-life and it's just my nature ... which is why I chuckled.
I truly apologize if I came off as being pedantic or offended you in any way. I sincerely hope that you will consider staying on this forum and getting the advice that you are looking for. I would absolutely feel awful if you left this forum because of my last comment.
BTW, I do want to emphasize that I have no experience regarding your most recent questions, hence my comment that others who have been down this road may be better suited to chime in.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Can paraproteins (M-spike) drop without treatment?
Ailsa,
I take offense at your remarks about Multibilly. His contributions to the Myeloma Beacon community have been top notch and well founded. Pedantic? You've got to be kidding. He knows more about this disease than most of us and has shared his knowledge freely, always with the caveat that he is not a doctor. The clearer you are with the specifics of your myeloma (yes, including units), the more able others are to help you.
It's hard enough to come to grips with this disease, and I'm thankful we have Multibilly on our team.
I take offense at your remarks about Multibilly. His contributions to the Myeloma Beacon community have been top notch and well founded. Pedantic? You've got to be kidding. He knows more about this disease than most of us and has shared his knowledge freely, always with the caveat that he is not a doctor. The clearer you are with the specifics of your myeloma (yes, including units), the more able others are to help you.
It's hard enough to come to grips with this disease, and I'm thankful we have Multibilly on our team.
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Sue T.
Re: Can paraproteins (M-spike) drop without treatment?
Multibilly is very knowledgeable, helpful , and is very active on the forums. He is well versed in multiple myeloma and I for one like to thank him for his contributions. This is a very informative site and a helpful community. I wouldn't dismiss it so easily over a small misunderstanding. We're all in this together.
Re: Can paraproteins (M-spike) drop without treatment?
Hi Ailsa,
I just would like to add my two cents.
We can understand how you feel. Maybe you are very sensitive and that is normal in your situation. Being newly diagnosed, this is very frightening, to say the least. But remember, we all are in the same boat; and we all should be very grateful to the Myeloma Beacon Staff and our beloved friends in this forum for all the love, help and support we get from them.
Another thing that I would like to mention is that, as you can see, more than 600 people visited your post and just Multibilly walked the extra mile to try to help you because most of us don’t have his knowledge and his ability to explain things so clear that you can understand easily.
We all should thank MultiBilly and all the others for their contribution and active participation helping all of us to understand a very complicated matter.
Ailsa, you are very welcome here in this forum and Multibilly said it better than me. I hope you stay with us.
All the best,
Betsy
I just would like to add my two cents.
We can understand how you feel. Maybe you are very sensitive and that is normal in your situation. Being newly diagnosed, this is very frightening, to say the least. But remember, we all are in the same boat; and we all should be very grateful to the Myeloma Beacon Staff and our beloved friends in this forum for all the love, help and support we get from them.
Another thing that I would like to mention is that, as you can see, more than 600 people visited your post and just Multibilly walked the extra mile to try to help you because most of us don’t have his knowledge and his ability to explain things so clear that you can understand easily.
We all should thank MultiBilly and all the others for their contribution and active participation helping all of us to understand a very complicated matter.
Ailsa, you are very welcome here in this forum and Multibilly said it better than me. I hope you stay with us.
All the best,
Betsy
Re: Can paraproteins (M-spike) drop without treatment?
Jumping on a person when she is down?
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Can paraproteins (M-spike) drop without treatment?
Dear Ailsa,
No one is jumping on you. Merely pointing out the error of your way.
So get over it.
Hope the port takes away some anxiety for you. The less needles the better huh!
Take Care Vicki
No one is jumping on you. Merely pointing out the error of your way.
So get over it.
Hope the port takes away some anxiety for you. The less needles the better huh!
Take Care Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Can paraproteins (M-spike) drop without treatment?
I would like to hope that you will stick around for a while Ailsa. In over 3 years of caring for my husband thru varied serious conditions, I have no place on the internet to get good and supportive information. Please keep in mind that the written word is open to a lot of our own interpretation. I think that is probably where this confusion comes from.
Having been around here for a while, I look at Multibilly and a few others on here as our in house experts. I understand the disease process for my own purposes, but I can't explain it properly. We are very fortunate to have contributors here who are able to answer the questions we have, especially those that come up when we are not due to see the doctor. So stick around a while and get to know the "language" of some of the posters. I for one wouldn't know how to get by without this community.
Having been around here for a while, I look at Multibilly and a few others on here as our in house experts. I understand the disease process for my own purposes, but I can't explain it properly. We are very fortunate to have contributors here who are able to answer the questions we have, especially those that come up when we are not due to see the doctor. So stick around a while and get to know the "language" of some of the posters. I for one wouldn't know how to get by without this community.
Re: Can paraproteins (M-spike) drop without treatment?
I've also been wondering about this because something similar happened to me.
My M-Spike over the past six months has dropped from 3.4 to 3.0. My beta-2 microglobulin at one facility went from 2.8 down to 2.4 normal range, at another facility it went from 2.7 to 2.6. My flow cytometry has less tumor makers and the CD numbers dropped dramatically. My total protein went from 9.4 down to 8.3, close to normal. I have never had any treatment of any type.
I didn’t think this was possible. What does it mean?
My M-Spike over the past six months has dropped from 3.4 to 3.0. My beta-2 microglobulin at one facility went from 2.8 down to 2.4 normal range, at another facility it went from 2.7 to 2.6. My flow cytometry has less tumor makers and the CD numbers dropped dramatically. My total protein went from 9.4 down to 8.3, close to normal. I have never had any treatment of any type.
I didn’t think this was possible. What does it mean?
Re: Can paraproteins (M-spike) drop without treatment?
Hi Smile,
First, congratulations on your latest numbers.
However, while all of these changes look positive, you are looking at only around a 9% reduction in your M-spike. You also have about a 9% reduction in your beta2 microgloblulin level, although beta2 microglobulin is only generally used for initial prognostic purposes and is not used to track disease progression.
I routinely have 10% fluctuations in my M-spike values and beta2 microglobulin levels and I am also not on any treatment.
You probably saw my earlier graphs in this thread (I will update them shortly when I get re-tested in a couple of weeks).
If you have the knowledge and capability in Excel or another spreadsheet app, it's useful to plot the standard deviation of your numbers like I do in my graphs (the standard deviation lines are the vertical bars in my graphs). That lets you know if you are statistically really seeing a significant break out from a trend (i.e when the graph line goes outside of the boundary of the vertical line). But keep in mind that you can also have major blips that last for a few months (like I do in my graphs) and that you should really look for a trend over several lab samples and not just one or two lab results.
First, congratulations on your latest numbers.
However, while all of these changes look positive, you are looking at only around a 9% reduction in your M-spike. You also have about a 9% reduction in your beta2 microgloblulin level, although beta2 microglobulin is only generally used for initial prognostic purposes and is not used to track disease progression.
I routinely have 10% fluctuations in my M-spike values and beta2 microglobulin levels and I am also not on any treatment.
You probably saw my earlier graphs in this thread (I will update them shortly when I get re-tested in a couple of weeks).
If you have the knowledge and capability in Excel or another spreadsheet app, it's useful to plot the standard deviation of your numbers like I do in my graphs (the standard deviation lines are the vertical bars in my graphs). That lets you know if you are statistically really seeing a significant break out from a trend (i.e when the graph line goes outside of the boundary of the vertical line). But keep in mind that you can also have major blips that last for a few months (like I do in my graphs) and that you should really look for a trend over several lab samples and not just one or two lab results.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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