Had bmb today. The 3 misses by the nurse to establish the iv was 10x more painful than the procedure.
Next up: mri of several areas and xrays on Monday, 12/14
24 hr collection UPEP
f/u with HA for staging on 12/30
HO said he was "very concerned" and put his hand on my thigh and turned his pc screen and showed me how much my CBC w/diff had changed in 16 days: He did not elaborate despite my tears. Any armchair opinions?
11/25/15 TODAY MY
Component Std Range Result 2 weeks OBSERVATION
Monocytes Relative 1 - 11 % 7 10 ^43%
Neutrophils Relative 42 - 78 % 58 72 ^24%
Neutrophils Absolute 2.7 4 ^48%
Eosinophils Relative 0 - 7 % 3 1 v67%
Lymphocytes Relative 16 - 52 % 32 17 v47%
Basophils Relative 0 - 4 % 1 1 same
Hematocrit 35 - 44 % 36 34 v5%
RBC 3.90 - 5.03 4.04 3.81 v5%
Platelet Count 150 - 450 295 305 ^3%
MCV 82 - 98 88 90 ^2%
Hemoglobin 12.0 - 15.5 11.8 11.3 v4%
RDW 12 - 15 % 12 13 ^8%
WBC 3.5 - 10.5 4.7 5.6 ^2%
Forums
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Timshel - Name: Kelly
- Who do you know with myeloma?: me
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: I'm not Elsa, how do I "Let it go"?
I'm sorry you have to go through this. There's nothing easy about this, but trust when I say that I, along with scores of other people on here, know just what you're feeling. As difficult and overwhelming as the anxiety may be, I would recommend trying to focus on what you know thus far. Do not to get ahead of yourself. Do not scour the internet for too much information. In my experience, and from what I've heard from other patients, doing so at this stage tends to produce more anxiety. Of course, this is all easier said than done.
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dustydenimdad - Name: Paul Garcia
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2010
- Age at diagnosis: 24
Re: I'm not Elsa, how do I "Let it go"?
Hi Kelly,
Glad the actual BMB itself went smoothly, other than the IV.
CBC results can vary quite a bit. I'm not a doc, but I would wait to see your overall results that include all your other key markers, including your pending BMB, MRI, UPEP results, etc before drawing any conclusions. I would also keep in mind that you have only a modest M-spike (1.6 g/dL) and that your FLC ratio (8) is not that high at all.
See Dr. Cohen's comments here wrt CBC results:
https://myelomabeacon.org/forum/lymphoctye-wbc-percentages-t1817.html#p9608
BTW, when you get your MRI, I would ask for a CD with the results as you leave. These come in handy if you ever need a second opinion.
Lastly, when you do have your follow up with the doc, record the conversation and have the doc go through the BMB test results page-by-page and have him highlight the key items on each page of the test results. Otherwise, it will be very difficult to sort this out by yourself (or on this forum). BMB test results are highly cryptic.
Best of luck with your upcoming tests. Try not to fret too much and enjoy the holiday season.
Glad the actual BMB itself went smoothly, other than the IV.
CBC results can vary quite a bit. I'm not a doc, but I would wait to see your overall results that include all your other key markers, including your pending BMB, MRI, UPEP results, etc before drawing any conclusions. I would also keep in mind that you have only a modest M-spike (1.6 g/dL) and that your FLC ratio (8) is not that high at all.
See Dr. Cohen's comments here wrt CBC results:
https://myelomabeacon.org/forum/lymphoctye-wbc-percentages-t1817.html#p9608
BTW, when you get your MRI, I would ask for a CD with the results as you leave. These come in handy if you ever need a second opinion.
Lastly, when you do have your follow up with the doc, record the conversation and have the doc go through the BMB test results page-by-page and have him highlight the key items on each page of the test results. Otherwise, it will be very difficult to sort this out by yourself (or on this forum). BMB test results are highly cryptic.
Best of luck with your upcoming tests. Try not to fret too much and enjoy the holiday season.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: I'm not Elsa, how do I "Let it go"?
I believe I am all "tested out" at this point...
I had every bone in my body xrayed yesterday. I looked at the cd, I see many black shadows, like water colors but not thumb print type black marks. Just more things to drive myself crazy with as I try to control what is obviously outside of my control.
My MRI actually had me in the sarcophagus for 2 hours and 37 minutes. It was insane. My Bon Jovi "muzak" kept replaying over and over again. When they inserted the dye, I had a stabbing pain in my hip which is where I suspect I have "issues" but it may be all in my head but I never expected the dye to feel like I was being stabbed by an icepick. I squeezed my little ball, told the tech and he said the best thing to counter the pain was to continue with the MRI so I complied, concerned as to why the dye was hurting me so badly.
Yesterday was also my 24 hour UPEP. Perhaps I don't drink enough but my jug was barely 1/3 full so that concerns me.
I had every bone in my body xrayed yesterday. I looked at the cd, I see many black shadows, like water colors but not thumb print type black marks. Just more things to drive myself crazy with as I try to control what is obviously outside of my control.
My MRI actually had me in the sarcophagus for 2 hours and 37 minutes. It was insane. My Bon Jovi "muzak" kept replaying over and over again. When they inserted the dye, I had a stabbing pain in my hip which is where I suspect I have "issues" but it may be all in my head but I never expected the dye to feel like I was being stabbed by an icepick. I squeezed my little ball, told the tech and he said the best thing to counter the pain was to continue with the MRI so I complied, concerned as to why the dye was hurting me so badly.
Yesterday was also my 24 hour UPEP. Perhaps I don't drink enough but my jug was barely 1/3 full so that concerns me.
Last edited by Timshel on Thu Dec 17, 2015 10:32 am, edited 1 time in total.
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Timshel - Name: Kelly
- Who do you know with myeloma?: me
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: I'm not Elsa, how do I "Let it go"?
Hi Kelly,
Sounds like yesterday was quite a long day with the skeletal X-rays, the MRI, and the UPEP tests. We don't get results to our tests ahead of a doctor's appointment where I live in Canada, and I think maybe that is for the good, since there will be a nurse and my doctor to explain test results. But I can understand how you might be puzzled as to the reaction of the medical staff being very solicitous of your comfort, whereas you have not had that experience previously. It seems a bit odd to me, since I would think that in their jobs everyone would be treated the same way. Many myeloma patients do present with bone fractures, and it is painful to hold a position steady while getting scans. Perhaps that is why they were worried for your comfort.
Sounds like yesterday was quite a long day with the skeletal X-rays, the MRI, and the UPEP tests. We don't get results to our tests ahead of a doctor's appointment where I live in Canada, and I think maybe that is for the good, since there will be a nurse and my doctor to explain test results. But I can understand how you might be puzzled as to the reaction of the medical staff being very solicitous of your comfort, whereas you have not had that experience previously. It seems a bit odd to me, since I would think that in their jobs everyone would be treated the same way. Many myeloma patients do present with bone fractures, and it is painful to hold a position steady while getting scans. Perhaps that is why they were worried for your comfort.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: I'm not Elsa, how do I "Let it go"?
In my Dr Googling, is it 1 lesion puts you in to multiple myeloma or whether it is 1 or 30, the hope of MGUS is just wishful thinking?
Also, I am having a hard time wrapping my mind around how the lesions are addressed or are they not at all radiation? Surgery? Bone grafts? Nothing at all?
I went to the hospital to get the radiologist report as nothing had appeared in my patient portal so it is in doctor-speak.
(I know I need to chill, await my staging appointment on the 30th and "Let it Go" but just as I titled this thread a few weeks ago, I am far from Elsa and I just feel innately compelled to do SOMETHING even though I realize it's wasted time.)
Thanks for listening. My two outstanding tests at this point are the 24-hour UPEP from Mayo and my bone marrow biopsy report.
Also, I am having a hard time wrapping my mind around how the lesions are addressed or are they not at all radiation? Surgery? Bone grafts? Nothing at all?
I went to the hospital to get the radiologist report as nothing had appeared in my patient portal so it is in doctor-speak.
(I know I need to chill, await my staging appointment on the 30th and "Let it Go" but just as I titled this thread a few weeks ago, I am far from Elsa and I just feel innately compelled to do SOMETHING even though I realize it's wasted time.)
Thanks for listening. My two outstanding tests at this point are the 24-hour UPEP from Mayo and my bone marrow biopsy report.
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Timshel - Name: Kelly
- Who do you know with myeloma?: me
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: I'm not Elsa, how do I "Let it go"?
Hi Kelly,
These lesion definitions for symptomatic multiple myeloma understandably throw a lot of people.
Utilizing the "CRAB criteria", the presence of one or more LYTIC lesions or osteoporosis is considered to be sufficient cause to diagnose a patient with symptomatic multiple myeloma. If you have lytic lesions, you are suffering bone damage, so you get treated ASAP.
The new IMWG guidelines also include the "myeloma-defining event" ("MDE") definition of more than 1 FOCAL lesions that are > 5 millimeter in size to also characterize symptomatic multiple myeloma. But be clear that not every doctor considers the presence of an MDE to be cause for starting treatment.
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
So, the question then becomes what's the difference between a focal lesion and a lytic lesion?
A focal lesion is a collection of abnormal cells WITHIN the bone marrow, as detected by MRI or PET/CT.
A lytic lesion is a lesion which appears on the OUTSIDE surface of the bone and results in the classic dark spots that you will see on many pictures on the web, such as these:
http://emedicine.medscape.com/article/204369-workup#c12
These lesion definitions for symptomatic multiple myeloma understandably throw a lot of people.
Utilizing the "CRAB criteria", the presence of one or more LYTIC lesions or osteoporosis is considered to be sufficient cause to diagnose a patient with symptomatic multiple myeloma. If you have lytic lesions, you are suffering bone damage, so you get treated ASAP.
The new IMWG guidelines also include the "myeloma-defining event" ("MDE") definition of more than 1 FOCAL lesions that are > 5 millimeter in size to also characterize symptomatic multiple myeloma. But be clear that not every doctor considers the presence of an MDE to be cause for starting treatment.
SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014
So, the question then becomes what's the difference between a focal lesion and a lytic lesion?
A focal lesion is a collection of abnormal cells WITHIN the bone marrow, as detected by MRI or PET/CT.
A lytic lesion is a lesion which appears on the OUTSIDE surface of the bone and results in the classic dark spots that you will see on many pictures on the web, such as these:
http://emedicine.medscape.com/article/204369-workup#c12
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: I'm not Elsa, how do I "Let it go"?
Kelly-
The waiting for results and the appointment with your doctor to interpret these results is one of the worst times.
To answer your question about if bone lesions are treated or not ... It depends on whether the lesion is symptomatic, i.e., pain, probability of fracture, etc; size, location, and/or whether serious destruction is present. A lesion that is symptomatic with pain, is large, and/or in an area that could cause serious problems if a fracture occurred may be treated with radiation. Sometimes surgery is needed to prevent fracture and/or nerve compression. This is often if the lesion is in the hip, femur or spine. If there are lesions present that aren't causing any problems and/or causing pain, then beginning treatment with drugs for myeloma and with a bisphosphonate usually are the only treatments for the lesions. I have multiple lesions throughout my body and have had a fracture in my arm that healed and had radiation for a lesion in my lower leg that was symptomatic for pain. All of the other lesions are there, but not causing problems.
If you are diagnosed somewhere along the spectrum of myeloma, you will find that the treatments for each person vary and the treatment philosophies of the various myeloma specialists vary. It is important to be seen by a myeloma specialist and to be comfortable with the one who you choose as your doctor. For you it would seem that the doctor would have to be one who will listen to you, answer your questions, address your concerns, and give you rationales for whatever treatment regimen is suggested.
Continue to ask your questions and hopefully the doctor who you are seeing on the 30th will be able to address your many concerns.
Nancy in Phila
The waiting for results and the appointment with your doctor to interpret these results is one of the worst times.
To answer your question about if bone lesions are treated or not ... It depends on whether the lesion is symptomatic, i.e., pain, probability of fracture, etc; size, location, and/or whether serious destruction is present. A lesion that is symptomatic with pain, is large, and/or in an area that could cause serious problems if a fracture occurred may be treated with radiation. Sometimes surgery is needed to prevent fracture and/or nerve compression. This is often if the lesion is in the hip, femur or spine. If there are lesions present that aren't causing any problems and/or causing pain, then beginning treatment with drugs for myeloma and with a bisphosphonate usually are the only treatments for the lesions. I have multiple lesions throughout my body and have had a fracture in my arm that healed and had radiation for a lesion in my lower leg that was symptomatic for pain. All of the other lesions are there, but not causing problems.
If you are diagnosed somewhere along the spectrum of myeloma, you will find that the treatments for each person vary and the treatment philosophies of the various myeloma specialists vary. It is important to be seen by a myeloma specialist and to be comfortable with the one who you choose as your doctor. For you it would seem that the doctor would have to be one who will listen to you, answer your questions, address your concerns, and give you rationales for whatever treatment regimen is suggested.
Continue to ask your questions and hopefully the doctor who you are seeing on the 30th will be able to address your many concerns.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: I'm not Elsa, how do I "Let it go"?
Any insight? Thank you SO much!
Protein Electrophoresis, 24 Hr Urine
Test Result Flag Unit RefValue
----------------------------------------------------
Total Protein 176 H mg/24 h <167
Collection Duration 24 h
Urine Volume 1600 mL
Concentration 11 mg/dL
Albumin 12 %
Alpha 1-Globulin 5 %
Alpha 2-Globulin 16 %
Beta-Globulin 34 %
Gamma-Globulin 33 %
A/G Ratio 0.14
Impression:
Small abnormality in beta fraction.
Small abnormality in gamma fraction.
ADDITIONAL INFORMATION:
On 07/14/2014 the total protein assay method changed
resulting in approximately a 20% increase in protein
values.
Protein Electrophoresis, 24 Hr Urine
Test Result Flag Unit RefValue
----------------------------------------------------
Total Protein 176 H mg/24 h <167
Collection Duration 24 h
Urine Volume 1600 mL
Concentration 11 mg/dL
Albumin 12 %
Alpha 1-Globulin 5 %
Alpha 2-Globulin 16 %
Beta-Globulin 34 %
Gamma-Globulin 33 %
A/G Ratio 0.14
Impression:
Small abnormality in beta fraction.
Small abnormality in gamma fraction.
ADDITIONAL INFORMATION:
On 07/14/2014 the total protein assay method changed
resulting in approximately a 20% increase in protein
values.
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Timshel - Name: Kelly
- Who do you know with myeloma?: me
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: I'm not Elsa, how do I "Let it go"?
Hi there.
Your "total protein" amount is a little high, but certainly not outrageously high.
The "abnormalities" in the beta and gamma fractions are suggestive of a problem, but maddeningly the report does not specify what the abnormalities are! So it's difficult to draw any conclusions.
When is your appointment with your doctor?
BTW, if I'm at all worried about pain during my MRIs, I'll take something ahead of time, like ativan and/ or vicodin. Lying still on painful bone lesions for that long is torture. Once I had hours of MRIs a day after bone marrow biopsy. Once I had a hot flash with sweats in the MRI, and I could feel the trickles of sweat running down my face and neck and I was all covered up with blankets. So gross. So I don't hesitate to dull my senses for that!
Your "total protein" amount is a little high, but certainly not outrageously high.
The "abnormalities" in the beta and gamma fractions are suggestive of a problem, but maddeningly the report does not specify what the abnormalities are! So it's difficult to draw any conclusions.
When is your appointment with your doctor?
BTW, if I'm at all worried about pain during my MRIs, I'll take something ahead of time, like ativan and/ or vicodin. Lying still on painful bone lesions for that long is torture. Once I had hours of MRIs a day after bone marrow biopsy. Once I had a hot flash with sweats in the MRI, and I could feel the trickles of sweat running down my face and neck and I was all covered up with blankets. So gross. So I don't hesitate to dull my senses for that!
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
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