Its one thing to have Myeloma but nobody told me it was such a numbers racket! I'm overwhelmed by the amount of technical numbers and counts required for understanding treatment and prognosis of the disease.
Is there a link or some digested application that weeds out this for Newcomers.
I guess I'm looking for a list of critical numbers to track and then to devise a system to track them. My style is personal advocacy and decision making through informed discussion. I'm now worried after two chemo dates that this treatment protocol could run away on a guy quickly.
May I ask what you folks consider the important numbers to track and then I'll do the homework to understand them?
Is there a computer program for such things? I'm starting to realize that folks aren't kidding about fatiue so keyboard time seems available. Its interesting that first we suffer from anemia then our treatment causes fatigue. Usually I can find some humor in almost anything and I suspect there is a great joke in that statement somewhere. Can't see it this week though.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Is there a link or help to coordinate all the numbers?
Hello Bob,
There are many resources for you to learn more about your test results. The International Myeloma Foundation has a section entitled "The Myeloma Patient's Guide to Understanding Your Test Results". This is free in PDF form on their website. The IMF also has free software "The Myeloma Manger" that you should look at after you familiarize yourself with the basics. Other good sources of information include the Multiple Myeloma Research Foundation, the Leukemia and Lymphoma Society and the National Comprehensive Cancer Center websites.
There are many resources for you to learn more about your test results. The International Myeloma Foundation has a section entitled "The Myeloma Patient's Guide to Understanding Your Test Results". This is free in PDF form on their website. The IMF also has free software "The Myeloma Manger" that you should look at after you familiarize yourself with the basics. Other good sources of information include the Multiple Myeloma Research Foundation, the Leukemia and Lymphoma Society and the National Comprehensive Cancer Center websites.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Is there a link or help to coordinate all the numbers?
Hello again Bob,
I would like to add that it is really not that difficult to get a handle on your tests although I completely understand how overwhelming it all must be for a new patient. Without question the one test result that you want really want to pay the most attention to are the fluctuations in your m-component (m-spike). The m-spike reflects how active your myeloma is. At diagnosis the m-spike is usually high and falls with therapy. Simply put, the goal is to make the m-spike disappear. Some patients do not have an m-spike. For them we measure the serum free light chains or urine free light chains. The principle is the same. Make the serum free light chain levels fall back to normal. Hang in there and keep asking questions !
I would like to add that it is really not that difficult to get a handle on your tests although I completely understand how overwhelming it all must be for a new patient. Without question the one test result that you want really want to pay the most attention to are the fluctuations in your m-component (m-spike). The m-spike reflects how active your myeloma is. At diagnosis the m-spike is usually high and falls with therapy. Simply put, the goal is to make the m-spike disappear. Some patients do not have an m-spike. For them we measure the serum free light chains or urine free light chains. The principle is the same. Make the serum free light chain levels fall back to normal. Hang in there and keep asking questions !
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Is there a link or help to coordinate all the numbers?
Thanks Doctor,
Your links are perfect.
I'll address my M-spike with the oncologist next week and keep a notebook.
Greatly appreciated.
Your links are perfect.
I'll address my M-spike with the oncologist next week and keep a notebook.
Greatly appreciated.
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Canuck Bob - Name: Bob
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb. 2011
- Age at diagnosis: 57
Re: Is there a link or help to coordinate all the numbers?
This is an AMAZING question. It was the first thing I tried to look for when I was diagnosed. Honestly, I had thought the hospital would provide this feature and that it would be an online solution so that communication would be facilitated, money saved, aggravation eliminated (or at least reduced), time saved, ... I could go on but to what end.
The first hospital I started at was testing some software, but it wasn't specific to multiple myeloma.
The second one doesn't even have checklists, but it is one of the leading hospitals in the world for cancer. My onc is also one of the leading oncs in the world.
I ended up creating some spreadsheets to track some information like meds, side effects, etc. I did not track my results because it was just too much effort, but I would have liked to. I have come to feel more comfortable just going over them with my onc every month or so.
However, my doctors (not in the same hospital) don't always have information because it would overwhelm them to have it sent by email all the time. Unless it is integrated into a properly organized system, it isn't as useful.
Honestly, with all the money invested in research and paid out to hospitals etc., you would have thought that they would have diverted some of the $$ to work with a company like Google to bring to market a product that facilitates communication, reduces anxiety (yes, some of us cancer patients actually suffer from fatigue, pain, anxiety, depression) and saves everyone time and money.
Out of curiosity, has anyone tried the software? Is it any good in Canada?
Were you able to locate a page that provided the "normal" ranges for test results? I found the page referenced, but only an explanation of the items being tested. Not the normal ranges (or is chemo fog responsible for my inability to see them?).
Good luck Canuck, from a fellow Canuck.
p.s. - my energy is low, but if anyone in Canada wants to try to work out some systems to efficiently track our disease and promote communication with our caregivers, please let me know. I have used a combination of the following to facilitate remembering and sharing:
- Google - Calendar, sites (I have one private one for multiple myeloma to track articles, store results, etc.)
- Excel - But I need to update my sheets - I may move them all to Google docs now.
Good luck
The first hospital I started at was testing some software, but it wasn't specific to multiple myeloma.
The second one doesn't even have checklists, but it is one of the leading hospitals in the world for cancer. My onc is also one of the leading oncs in the world.
I ended up creating some spreadsheets to track some information like meds, side effects, etc. I did not track my results because it was just too much effort, but I would have liked to. I have come to feel more comfortable just going over them with my onc every month or so.
However, my doctors (not in the same hospital) don't always have information because it would overwhelm them to have it sent by email all the time. Unless it is integrated into a properly organized system, it isn't as useful.
Honestly, with all the money invested in research and paid out to hospitals etc., you would have thought that they would have diverted some of the $$ to work with a company like Google to bring to market a product that facilitates communication, reduces anxiety (yes, some of us cancer patients actually suffer from fatigue, pain, anxiety, depression) and saves everyone time and money.
Out of curiosity, has anyone tried the software? Is it any good in Canada?
Were you able to locate a page that provided the "normal" ranges for test results? I found the page referenced, but only an explanation of the items being tested. Not the normal ranges (or is chemo fog responsible for my inability to see them?).
Good luck Canuck, from a fellow Canuck.
p.s. - my energy is low, but if anyone in Canada wants to try to work out some systems to efficiently track our disease and promote communication with our caregivers, please let me know. I have used a combination of the following to facilitate remembering and sharing:
- Google - Calendar, sites (I have one private one for multiple myeloma to track articles, store results, etc.)
- Excel - But I need to update my sheets - I may move them all to Google docs now.
Good luck
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Hannao - Name: houston
- Who do you know with myeloma?: Me, myself & I
- When were you/they diagnosed?: August 28, 2008 (guided biopsy)
- Age at diagnosis: 54
Re: Is there a link or help to coordinate all the numbers?
I haven't done all the average ranges yet. I've looked up lots of different sites and different sites give slightly different ranges so I'm not sure how correct they are but hope its of some help as I too could never find a site which gave estimated "normal" ranges.
Blood Test Results for Avg person
Blood Chemistry
Sodium 133 - 146 mmo/L
Potasium 3.5 - 5.4 mmo/L
Chloride 98 - 106 mmo/L
Bicarbonate 20 - 32 mmo/L
Urea 3.5 - 9 mmo/L
Creatine 60 - 120 umo/L
Estimated Glomerular Filtration Rate > 59 mL/min/1
Glucose Random 3.6 - 6 mmo/L
Bilrubin Total 4.5 - 5 umo/L
Albumin 35 - 50 g/L
Protein 60 - 84 g/L
ALP 35 - 110 U/L
Gamma GT 5 - 50 U/L
ALT 5 - 40 U/L
AST 10 - 40 U/L
Lact.Dehydrogenase 120 - 250 U/L
Calcium .85 - 1.05 mmo/L
Corrected Calcium mmo/L
Magnesium 1.9 - 2.7 mmo/L
Phosphate mmo/L
Iron umo/L
Transferrin g/L
Transferrin Satn %
Ferittin Ug/L
Vitamin B12 Level pmol/L
Serum Folate nmo/L
Red Cell Folate nmo/L
Uric Acid .21 -.85 mmo/L
Haematology
WCC 4.3 - 10.8 L
HB g/L
PLT L
PCV L/L
MCV 76 - 100 f/L
RCC 4.2 - 6.9 L
MCH 27 - 32 pg
MCHC 320 - 360 g/L
RDW 10 - 15 %
Neutrophilis 2 - 7.5 L
Lymphocytes 1 - 4 L
Monococytes 0 - 1 L
Eosonophils 0 - 0.5 L
Basophils 0 - 0.3 L
Myelocytes
Toxic Change
Poikilocytes
Polychromasia
Elliptocytes
Tear Drops
Rouleaux
Blood Film
Film Examined
Blood Film Comment
ESR 1 - 30 multiple myeloma/hr
Endocrinology
TSH mIU/L
Coagulation Studies
PT Test sec
APTT sec
INR
Immunology
Immunoglobulin A Level .85 - 3.85 g/L
Immunoglobulin G Level 5.65 - 17.65 g/L
Immunoglobulin M Level .55 - 3.75 g/L
Total Kappa 0.26 g/L
Total Lambada 1.65 g/L
Beta 2 Microglobulin mg/L
C Reactive Protein 10 mg/L
EPG Albumin 38 - 50 g/L
Alpa 1 Globulins 2 - 3 g/L
Alpha 2 Globulins 6-Oct g/L
Beta Globulins 7 - 10 g/L
Gamma Globulins 7 - 16 g/L
EPG Comment
Paraprotein 1 g/L
Serum IFE
Free Kappa 3.3 - 19.4 mg/L
Free Lambada 5.7 - 26.3 mg/L
Kappa/Lambada Ratio .26/1.65
Urine Investigations
Ur Protein
Protein Excr
Ur immunofixation
Ur EPG
Urine Duration
Urine Volume
Blood Test Results for Avg person
Blood Chemistry
Sodium 133 - 146 mmo/L
Potasium 3.5 - 5.4 mmo/L
Chloride 98 - 106 mmo/L
Bicarbonate 20 - 32 mmo/L
Urea 3.5 - 9 mmo/L
Creatine 60 - 120 umo/L
Estimated Glomerular Filtration Rate > 59 mL/min/1
Glucose Random 3.6 - 6 mmo/L
Bilrubin Total 4.5 - 5 umo/L
Albumin 35 - 50 g/L
Protein 60 - 84 g/L
ALP 35 - 110 U/L
Gamma GT 5 - 50 U/L
ALT 5 - 40 U/L
AST 10 - 40 U/L
Lact.Dehydrogenase 120 - 250 U/L
Calcium .85 - 1.05 mmo/L
Corrected Calcium mmo/L
Magnesium 1.9 - 2.7 mmo/L
Phosphate mmo/L
Iron umo/L
Transferrin g/L
Transferrin Satn %
Ferittin Ug/L
Vitamin B12 Level pmol/L
Serum Folate nmo/L
Red Cell Folate nmo/L
Uric Acid .21 -.85 mmo/L
Haematology
WCC 4.3 - 10.8 L
HB g/L
PLT L
PCV L/L
MCV 76 - 100 f/L
RCC 4.2 - 6.9 L
MCH 27 - 32 pg
MCHC 320 - 360 g/L
RDW 10 - 15 %
Neutrophilis 2 - 7.5 L
Lymphocytes 1 - 4 L
Monococytes 0 - 1 L
Eosonophils 0 - 0.5 L
Basophils 0 - 0.3 L
Myelocytes
Toxic Change
Poikilocytes
Polychromasia
Elliptocytes
Tear Drops
Rouleaux
Blood Film
Film Examined
Blood Film Comment
ESR 1 - 30 multiple myeloma/hr
Endocrinology
TSH mIU/L
Coagulation Studies
PT Test sec
APTT sec
INR
Immunology
Immunoglobulin A Level .85 - 3.85 g/L
Immunoglobulin G Level 5.65 - 17.65 g/L
Immunoglobulin M Level .55 - 3.75 g/L
Total Kappa 0.26 g/L
Total Lambada 1.65 g/L
Beta 2 Microglobulin mg/L
C Reactive Protein 10 mg/L
EPG Albumin 38 - 50 g/L
Alpa 1 Globulins 2 - 3 g/L
Alpha 2 Globulins 6-Oct g/L
Beta Globulins 7 - 10 g/L
Gamma Globulins 7 - 16 g/L
EPG Comment
Paraprotein 1 g/L
Serum IFE
Free Kappa 3.3 - 19.4 mg/L
Free Lambada 5.7 - 26.3 mg/L
Kappa/Lambada Ratio .26/1.65
Urine Investigations
Ur Protein
Protein Excr
Ur immunofixation
Ur EPG
Urine Duration
Urine Volume
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
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