To the additional post-
I do not want speak ill of any other physician or to doubt your interpretation of what was said.
1) You always have a right and responsibility to educate yourself in any problem you have. I feel that is quite important for every patient with myeloma to read, hear, embrace this disease. It is a disease you will hopefully have for a long time and that time will not always be easy. The internet and support groups are a way to learn and hear other peoples stories about their multiple myeloma or the caregiver's story.
2) Most doctors are concerned you will hear the wrong information or "terrible stories" and do not want you to be unnecessarily concerned. Some are good and some are not good -- this is the unfortunate nature of multiple myeloma.
3) As most of the Beacon participants know, there is a lot of information out there that is not always easy to synthesize. So use the internet as tool to educate yourself -- knowing that you must be careful and find multiple sources (credible sources) before considering something fact vs. opinion vs. wrong. Hopefully, you will also be able to clarify these things with your MD. Or bring things to his/her attention that may have otherwise been missed.
I agree with stay active.
Forums
Re: Just found abnormal protein level
Thanks again, Dr Ken.
I have tried both Benadryl and Zyrtec, with the latter helping much better, especially at night. The itching comes and goes, and has actually improved a lot of late.
I think staying on the sarcoid meds, for now, is a good plan, even although they may, in some way, be adding to the plasma issue. I have not had any infections or illnesses, thankfully, and I my calcium levels, at last testing a month or so back, were in the normal range.
I last had a DEXA about five years back, when things looked normal. I am due for another this year, so might as well go and get it done. On the sarcoid protocol, we avoid vitamin D in food and limit sun, so my D levels are below normal, but even with that, my bone density went from high risk osteo to totally normal, and I never had one episode of colds, flu or any of the other issues, such as yeast and sinus infections , with which I was plagued pre- protocol for many years. My liver enzymes totally normalized after a couple of years on the protocol and scans show a totally normal organ again.
I must add, that when I had the splenectomy, the doctors failed to see that I had a small accessory spleen, and that was left behind. Not sure how much it functions, but it seems to work some.
I am wondering if I have not had this M protein for years, as it was never tested before. The family doctor only started getting concerned with the drop in he hemoglobin levels this past year, and so did the test. It well might have been with me for some time already, so although the wait to see a specialist is frustrating, I can't imagine that it will make things much worse - at least I hope not.
I have tried both Benadryl and Zyrtec, with the latter helping much better, especially at night. The itching comes and goes, and has actually improved a lot of late.
I think staying on the sarcoid meds, for now, is a good plan, even although they may, in some way, be adding to the plasma issue. I have not had any infections or illnesses, thankfully, and I my calcium levels, at last testing a month or so back, were in the normal range.
I last had a DEXA about five years back, when things looked normal. I am due for another this year, so might as well go and get it done. On the sarcoid protocol, we avoid vitamin D in food and limit sun, so my D levels are below normal, but even with that, my bone density went from high risk osteo to totally normal, and I never had one episode of colds, flu or any of the other issues, such as yeast and sinus infections , with which I was plagued pre- protocol for many years. My liver enzymes totally normalized after a couple of years on the protocol and scans show a totally normal organ again.
I must add, that when I had the splenectomy, the doctors failed to see that I had a small accessory spleen, and that was left behind. Not sure how much it functions, but it seems to work some.
I am wondering if I have not had this M protein for years, as it was never tested before. The family doctor only started getting concerned with the drop in he hemoglobin levels this past year, and so did the test. It well might have been with me for some time already, so although the wait to see a specialist is frustrating, I can't imagine that it will make things much worse - at least I hope not.
Re: Just found abnormal protein level
I use very low levels of bio identical progesterone cream (3%, 1/4 tsp once a night,) and a small amount of bio-identical estriol cream, vaginally. The former, I use nightly for three weeks of each month, with one off, and the latter, just once or twice a week, if needed. It has got me through peri menopause and menopause extremely well, and although my estrogen levels are low, the remainder of my hormones are in range for my age. I am now 58 and reached menopause at 53.
As I still do not know whether I have MGUS or multiple myeloma until further testing, is it alright for me to continue on these creams? I have used the progesterone for years, with no problems and no difference in my regular blood work, on or off the cream.
If it is going to make a difference, using these creams, to my bone marrow biopsy (which I can't see being done before July), I would stop them, but if not, I think I would like to carry on.
Still waiting for Bence Jones protein results. I should hear tomorrow - if the sample was not lost - which happens from time to time. If I do show Bence Jones protein, can that be because of my renal dysfunction, and does it mean I could still only be at MGUS level?
Also, can an M protein ever vanish, or is it with you for life?
As I still do not know whether I have MGUS or multiple myeloma until further testing, is it alright for me to continue on these creams? I have used the progesterone for years, with no problems and no difference in my regular blood work, on or off the cream.
If it is going to make a difference, using these creams, to my bone marrow biopsy (which I can't see being done before July), I would stop them, but if not, I think I would like to carry on.
Still waiting for Bence Jones protein results. I should hear tomorrow - if the sample was not lost - which happens from time to time. If I do show Bence Jones protein, can that be because of my renal dysfunction, and does it mean I could still only be at MGUS level?
Also, can an M protein ever vanish, or is it with you for life?
Re: Just found abnormal protein level
July 3, 2013 - Update
I saw a hematologist last week. Not an multiple myeloma specialist. He ran a whole slew of blood tests for my anemia.
The only abnormal readings were as follows:
Hemoglobin - 94 (115-155). Still low, but bumped up from 89 at last testing a month ago. I have had readings like this for the past 2 years,without an M-spike (was tested) until this January,
Hematocrit - 0.27 (0.33-0.45 l/l)
RBC - 2.82 (3.60- 5.01 x10E12/L)
MCH - 33 (27-32pg)
Reticulocytes - 18 (20- 85 x10E9/L) * Low
WBC - 3.7 (4.0-11.0) Usual for me for many years
Smear showed few RBC ovalcytes. Rest all normal.
Direct Coombs - negative.
Creatinine - 112 (50-100) - down from 129 last month. Improved. Hematologist not concerned about largely stable renal function- attributed to high dose ARB therapy for sarcoid and sarcoid itself, perhaps(?)
All liver tests totally normal range, ferritin panel in range - 115 ( 80- 300 - Normal iron stored)
TSH normal
Gammopathy screen 24H U
protein urine - < 0.05 ( 0.15 g/d)
Interpretation :
No free light chains observed by immunofixation.
I have a follow-up appointment with the hematologist on July 16. He felt pretty sure I have MGUS, as all my globulins were in range. and said it should be monitored annually, but that I might still need a bone marrow biopsy to see what is causing the anemia.He felt it could be due to my sarcoid meds, as it does suppress the EPO. We are still waiting the result of that test. My last one was below normal, even with my relatively moderate renal dysfunction.
Then, I got a call today from Sunnybrook Hospital in Toronto with an appointment with an myeloma specialist there. Everyone feels I should not give this appointment up, as it would most likely be best to be with someone who specializes in this area. If I do not have multiple myeloma, I will most likely be referred back to a community hematologist for monitoring.
So, from waiting, I now sit with two appointments! I believe a bone marrow biopsy would be definitive, and I would be surprised if it was not ordered for me.
I will keep you updated as to what is done next.
I saw a hematologist last week. Not an multiple myeloma specialist. He ran a whole slew of blood tests for my anemia.
The only abnormal readings were as follows:
Hemoglobin - 94 (115-155). Still low, but bumped up from 89 at last testing a month ago. I have had readings like this for the past 2 years,without an M-spike (was tested) until this January,
Hematocrit - 0.27 (0.33-0.45 l/l)
RBC - 2.82 (3.60- 5.01 x10E12/L)
MCH - 33 (27-32pg)
Reticulocytes - 18 (20- 85 x10E9/L) * Low
WBC - 3.7 (4.0-11.0) Usual for me for many years
Smear showed few RBC ovalcytes. Rest all normal.
Direct Coombs - negative.
Creatinine - 112 (50-100) - down from 129 last month. Improved. Hematologist not concerned about largely stable renal function- attributed to high dose ARB therapy for sarcoid and sarcoid itself, perhaps(?)
All liver tests totally normal range, ferritin panel in range - 115 ( 80- 300 - Normal iron stored)
TSH normal
Gammopathy screen 24H U
protein urine - < 0.05 ( 0.15 g/d)
Interpretation :
No free light chains observed by immunofixation.
I have a follow-up appointment with the hematologist on July 16. He felt pretty sure I have MGUS, as all my globulins were in range. and said it should be monitored annually, but that I might still need a bone marrow biopsy to see what is causing the anemia.He felt it could be due to my sarcoid meds, as it does suppress the EPO. We are still waiting the result of that test. My last one was below normal, even with my relatively moderate renal dysfunction.
Then, I got a call today from Sunnybrook Hospital in Toronto with an appointment with an myeloma specialist there. Everyone feels I should not give this appointment up, as it would most likely be best to be with someone who specializes in this area. If I do not have multiple myeloma, I will most likely be referred back to a community hematologist for monitoring.
So, from waiting, I now sit with two appointments! I believe a bone marrow biopsy would be definitive, and I would be surprised if it was not ordered for me.
I will keep you updated as to what is done next.
Re: Just found abnormal protein level
Kas wrote: "Also, since about August last year, I developed all over body itching, with no rash. No one has been able to determine the cause, and it settles and returns randomly now. Could this be due to paraproteins?"
I just came across this thread while researching my health issues. I too have sarcoidosis & either MGUS or smoldering myeloma. The myeloma specialist isn't quite sure which one I have, because my numbers are a bit high for MGUS & low for smoldering. He did say I have a rather low chance of it turning to myeloma.
I have enlarged lymph nodes also and the one in my groin tested negative, but he's having a team of docs look at my PET/CT scan just to make sure, but pretty good outlook on cancer!
The MAIN reason I'm posting here is because of the HORRIBLE itching I have!! My lung doc said it might be sarcoidosis related, but has never heard of a case without skin lesions. Cancer doc has no idea why I might be itching. (Nor does dermatology doc, who did blood testing that led to abnormal m-spike which led to 2 cancer docs.)
Anyway, did you find any link to your itching, and/or treatment? It's unbearable!
Thanks, JG
I just came across this thread while researching my health issues. I too have sarcoidosis & either MGUS or smoldering myeloma. The myeloma specialist isn't quite sure which one I have, because my numbers are a bit high for MGUS & low for smoldering. He did say I have a rather low chance of it turning to myeloma.
I have enlarged lymph nodes also and the one in my groin tested negative, but he's having a team of docs look at my PET/CT scan just to make sure, but pretty good outlook on cancer!
The MAIN reason I'm posting here is because of the HORRIBLE itching I have!! My lung doc said it might be sarcoidosis related, but has never heard of a case without skin lesions. Cancer doc has no idea why I might be itching. (Nor does dermatology doc, who did blood testing that led to abnormal m-spike which led to 2 cancer docs.)
Anyway, did you find any link to your itching, and/or treatment? It's unbearable!
Thanks, JG
Re: Just found abnormal protein level
Have you had your liver function checked? The all over itching could be a sign of liver disease and the liver is one of the organs that can be involved in AL amyloidosis. You can have normal liver function tests and still have AL amyloidosis affecting your liver. Unexplained hepatomegaly (enlarged liver) was the key differentiating symptom that put my gastroenterologist on a path to consider AL amyloidosis. I firmly believe that symptom and his broad diagnostic approach saved my life.
Kathy
Kathy
-
koontzkg - Name: Kathy
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2/2013
- Age at diagnosis: 51
Re: Just found abnormal protein level
Hi Kathy,
I asked docs about liver function tests on my CBC & they said the liver is fine. Is there a different liver function test I should be asking for?
Thanks, JG
I asked docs about liver function tests on my CBC & they said the liver is fine. Is there a different liver function test I should be asking for?
Thanks, JG
Re: Just found abnormal protein level
I am interested in these comments on neuropathy.
I have had smoldering myeloma for 3 years and my IgG has slowly risen above 30 during this time. My kappa light chains, however, have jumped to nearly 600, and my kappa lambda ratio is consistently over 100.
After numerous scans it was deemed that bones (no lytic or sclerotic lesions) are ok, as are kidneys, but peripheral neuropathy is becoming so problematic that is is causing great distress and becoming disabling.
My haematologist has put me on 6 months dexamethasone 20 and 500 cyclophosphomide with the aim of perhaps applying for lenalidomide (Revlimid), as its not available under licence for first line where I live. Last May, I had an enlarged thyroid removed, but it was not tested for amyloid. They did find a papillary carcinoma though.
I am 56 I wonder if my haematologist is perhaps jumping the gun with treatment.
(This is a dex night, and its 5.34 am where I am.)
I have had smoldering myeloma for 3 years and my IgG has slowly risen above 30 during this time. My kappa light chains, however, have jumped to nearly 600, and my kappa lambda ratio is consistently over 100.
After numerous scans it was deemed that bones (no lytic or sclerotic lesions) are ok, as are kidneys, but peripheral neuropathy is becoming so problematic that is is causing great distress and becoming disabling.
My haematologist has put me on 6 months dexamethasone 20 and 500 cyclophosphomide with the aim of perhaps applying for lenalidomide (Revlimid), as its not available under licence for first line where I live. Last May, I had an enlarged thyroid removed, but it was not tested for amyloid. They did find a papillary carcinoma though.
I am 56 I wonder if my haematologist is perhaps jumping the gun with treatment.
(This is a dex night, and its 5.34 am where I am.)
-
jellitot
Re: Just found abnormal protein level
I just had my 6 monthly MGUS tests done, and it has come back with higher free kappa and lambda chains and therefore a higher free light chain ratio. The ratio went up from 3.93 to 4.41 on the previous test. Free kappa light chain went from 40.50 to 60.50 and free lambda light chain from 10.30 to 13.80. This is the highest I have been since diagnosis. The M-protein remains stable at 1 and has not increased since diagnosis.
I am followed by my family doctor who follows the instructions of the myeloma specialist I have consulted. She does not want to see me again until my ratio reaches 10. I am still awaiting Bence - Jones fine test results. Last test, a very small amount (too small to measure) showed, but then I do have renal dysfunction, most likely sarcoid related, as I had that long before MGUS, as well as anemia. I am still on the ARB protocol for my sarcoid, but on a lesser amount due to my renal function declining. The anemia is stable, and even somewhat improved on less of the ARB. AIC is in range and potassium just slightly out of range at 5.2. The myeloma specialist feels that my sarcoid is the reason for my M-spike. I am afraid I may be progressing.
My doctor says that If I am concerned, she will repeat the MGUS tests in 4 instead of 6 months to see if this upward trend is continuing. We will repeat 24-hour creatinine clearance in about 6 weeks. The micro albumin creatinine ratio is in the normal range, but the creatinine clearance is not good and serum creatinine is 129.
If things do not improve, I will have to see a nephrologist.
Many thanks.
I am followed by my family doctor who follows the instructions of the myeloma specialist I have consulted. She does not want to see me again until my ratio reaches 10. I am still awaiting Bence - Jones fine test results. Last test, a very small amount (too small to measure) showed, but then I do have renal dysfunction, most likely sarcoid related, as I had that long before MGUS, as well as anemia. I am still on the ARB protocol for my sarcoid, but on a lesser amount due to my renal function declining. The anemia is stable, and even somewhat improved on less of the ARB. AIC is in range and potassium just slightly out of range at 5.2. The myeloma specialist feels that my sarcoid is the reason for my M-spike. I am afraid I may be progressing.
My doctor says that If I am concerned, she will repeat the MGUS tests in 4 instead of 6 months to see if this upward trend is continuing. We will repeat 24-hour creatinine clearance in about 6 weeks. The micro albumin creatinine ratio is in the normal range, but the creatinine clearance is not good and serum creatinine is 129.
If things do not improve, I will have to see a nephrologist.
Many thanks.
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