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Just found abnormal protein level

by ellynsamrosiegreta on Sat Mar 02, 2013 1:01 pm

Just yesterday I was told by my nueorologist that I had an an abnormal M protein which I think is anything over 0.0 right?. I saw him to address the one symptom I do have - tingling in hands and feet. He said at this point it was very unlikely that I had a "bad situation" - his comment (1/10th of 1%) but scheduled a hemoglobin test and suggested I not freak out by what I might read on the internet.

However, I have read a lot on the internet - I am not freaking out but want to be very informed about my situation regarding the protein levels and my nueoropathy I am starting to piece together my situation.

My hope in posting is to make sure that I ask my doctor all the right questions. I have gathered that things move to the next stage in a low percentage of cases - but that this will be something I need to monitor in perpetuity.

I am 47 years old, have nueoropathy - no other symptoms. Blood work all normal - but red cell count is on the lower end of normal.

Does anyone have any suggestions for questions to my doctor based on your experiences?

ellynsamrosiegreta

Re: Just found abnormal protein level

by Dianem on Sat Mar 02, 2013 6:41 pm

Hi ellynsamrosiegreta - in Nov of 2011 I heard for the first time I had an abnormal protein (also called M spike or para protein) after visiting my endocrinologist for an annual visit. Her office referred me to a hemotologist oncologist. At the visit, was told M spikes are common with autoimmune diseases, but still had to do the 24 hr urine assessment, x rays, and repeat blood work. I ended up with a diagnosis of MGUS - a condition with no symptoms other than an M spike. Most people are unaware they have MGUS.

Do you know what the M spike value is? I know others with MGUS and most doctors will often do 24 hr urine, x rays, and blood tests. So far I've had 3 blood tests and they have been the same. I don't know what the 1/10 of 1 percent means, but I was told that every year 1% of the MGUS population progresses to multiple myeloma and that is why twice a year blood tests are scheduled. Just visited my endocrinologist and she said she has several patients with MGUS (and most have had it for years). Never heard of it before, but now meeting more people with it. Take care.

Dianem

Re: Just found abnormal protein level

by ellynsamrosiegreta on Sat Mar 02, 2013 6:57 pm

Thank you for your post. I appreciate your insights and information. Very helpful and appreciated.

ellynsamrosiegreta

Re: Just found abnormal protein level

by Dianem on Sun Mar 03, 2013 12:52 pm

Hi - after I wrote the response to your concerns about MGUS, I remembered a neighbor who also has had MGUS for years has what she refers to as 'nerve problems' - tingling and burning type sensations. Her type of MGUS is different from mine - she is Ig M or Ig A and claims nerve symptoms are more common with her type. I don't know if this is accurate, perhaps your doctor would know if MGUS causes this issue.

There are different types of MGUS. I had a bone marrow aspiration when first diagnosed because my WBC was under 4. This is when I learned I am Ig G MGUS trisomic 7. Later I learned (from past blood tests) that my WBC has been low for several years, but my endocrinologist was not concerned since I don't get sick. I asked if MGUS caused the low count and she said it was unclear. My oncologist's advice is to stay active, avoid the Internet, report new symptoms, and get blood tests every 6-8 months. She was the doctor who told me my MGUS does not cause symptoms. She also said if I do present a symptom to not 'freak out,' question if the symptom is related to my low thyroid, and then contact her.

Dianem

Re: Just found abnormal protein level

by Dr. Peter Voorhees on Sun Mar 03, 2013 3:55 pm

There are several conditions that need to be considered in the context of MGUS and neuropathy.

1) Anti-MAG neuropathy. This is an IgM MGUS in which the IgM antibodies made by the rogue clone of lymphocytes/plasma cells bind to the myelin sheaths of peripheral nerves, causing subsequent damage and neuropathy symptoms. This is something that is commonly treated with rituximab. If your MGUS is an IgM type, you should get screened for this entity.

2) AL amyloidosis. This is a condition in which the monoclonal antibodies made by the rogue plasma cells deposit in tissues over months and years, causing gradual damage to the affected organs. This can include the kidneys, the nerves, the GI tract and the heart. It is important to make sure that this is considered during your work-up.

3) POEMS syndrome. I highly doubt you have this. This is a highly debilitating neuropathy with many other symptoms.

If you have none of the above and your hematologist-oncologist determines that you have MGUS and not myeloma, we would call your condition MGUS neuropathy. It is unclear whether the monoclonal antibodies made as part of the MGUS are the cause of the neuropathy in these cases. As such, MGUS neuropathy is not treated with myeloma chemotherapy.

Often times, MGUS neuropathy behaves like CIDP [Chronic inflammatory demyelinating polyneuropathy], another type of neuropathy, and is treated in a similar manner. If the neuropathy is mild and indolent, symptomatic management is often pursued alone.

Hope this helps. Take care!

Pete V.
Dr. Peter Voorhees
University of North Carolina at Chapel Hill

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Peter Voorhees
Name: Peter Voorhees, M.D.
Beacon Medical Advisor

Re: Just found abnormal protein level

by Kas on Fri May 31, 2013 5:32 pm

Hello everyone,

Kas from Canada here again - the one who has sarcoidosis.

I had my second M test this past week, and it came back stable, with no change, at 1. The gammopathy screen found an IgG KAPPA restriction . " Significance is unclear without further lab or clinincal findings. Recommend 24 hr urine testing for Bence Joones protein.

However, my anemia is worsening - hemoglobin has gone down to 88 from 90 last month. Kidney function bounces around, so doc not to concerned there ( creatinine 127), but given the anemia worsening ( it is at its lowest ever now, but with no symptoms so far), she wants me to see a hem/onc and have a BMB. Being Canada, it may take a good few weeks to get an appointment, so now I wait and try not to worry too much.

My family doc says that if BJ protein does show in my urine, that points to multiple myeloma rather than MGUS. Is that correct? I have read otherwise.

Also, although the anemia is concerning, I have had it for a good few years now, as well as the renal dysfunction. This is nothing new, and the way I figure it, if it was multiple myeloma for so long, untreated, I most likely would not be here right now - or am I just being optimistic that this is due to my sarc and immunopathology induced my my off label usage of Olmetec in high doses. Anemia of chronic disease is not unknown in sarcoidosis, and I do have a low erthroptein count ( 3.9 at last testing around January of this year.)

So, now I wait to see the specialist, and I hope and pray this is just MGUS and not multiple myeloma at this point in time. My only symptom, which is actually improving, is a left hand, which goes numb at night. Wearing a hand brace has helped considerably.

Greetings from Toronto,

Kas

Kas

Re: Just found abnormal protein level

by Dr. Ken Shain on Sat Jun 01, 2013 7:44 am

I agree that you should be seen by a hematologist and have complete staging done. I also agree that you likely have a stable pre-malignant condition based on your M spike. But it will be important for you be seen. Further, as Dr. Voorhees stated in his previous post, it is important make sure that there is (or is not) malignant plasma cell disorder causing these issues (MAG-neuropathy, AL, ...).

The progressive anemia and renal/kidney issues are concerning, but a link to myeloma must be made to consider active disease.

Best of luck and please keep us updated.
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

Re: Just found abnormal protein level

by Kas on Sat Jun 01, 2013 3:52 pm

Thanks so much for your reply, Dr Ken.

Should I stop my experimental sarcoid treatment ( high dose ARB) in the meantime, as it could be contributing to the reduced kidney function and anemia with the reduction of erytthropotein. My level is 3.9.? The problem is that I do not know if you can just quit cold turkey after being on the drug for so many years. It does have anti- tumor abiltiy, so that might be a good thing right now.

I think my renal dysfunction is most likely related to my sarcoid. It bounces around, but never goes up too much. Scans show normal sized kidneys and I have no swelling of the legs etc. I am doing the BJ 24 hour urine test this coming week. I feel it will most likely be positive, but I know that only the BMB can give a definitive diagnosis.

The anemia has been ongoing, but in the last year or so, has been slowly dropping. Ironically, I have had no symptoms of fatigue with it, and am able to work, travel and exercise still. In fact, I have never felt better , so go figure!

The problem in Canada, is how long I will have to wait to see the oncologist. It could take a month or more, and then a bit longer to arrange BMD. The waiting is pretty hard on the nerves, but I am doing my best to keep busy in the interim.

I am just on the border for full - blown diabetes, so would prefer to remain steroid - free if I need treatment. Is this ever possible? I watch my diet carefully and eat gluten- free due to an intolerance found in blood work. Being asplenic for the past decade has never been an issue, and despite working in a large school, I have never missed a sick day with colds or flus. I attribute this to the ARB treatment which is immuno- stimulatory.

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 in the blood?

How often a stable pre- maiignant condition monitored, and does starting early treatment better your long- term survival odds, or is that not a factor?

Many thanks once again for your valued input. I will keep you in the loop re test results.

Kas

Re: Just found abnormal protein level

by dianaiad on Sat Jun 01, 2013 10:20 pm

Dianem wrote:
<snip to here>
> My oncologist's advice is to stay active, avoid the
> Internet, report new symptoms,<snip to end>

OK (entering full rant mode...fair warning...) I am so (insert appropriate emotional expletive here) TIRED of having these "I know better than you, just trust us and let us tell you what you need to do and know" doctors tell us to 'avoid the internet."

True, given my own experience with this whole thing, and my own doctor's complete and utter lack of communication skills, I may be biased. However, if some doctor told ME to 'avoid the internet," then the internet is the first place I'd go to.

In fact, it WAS the first place I went to. Frankly, if it weren't for my own searches on the internet, I'd still be wondering exactly what it is I HAD...eight weeks into chemotherapy. True, I have post graduate degrees and am pretty good at research myself, and know HOW to deal with the internet and to judge good sources vs. bad ones, and I know that there is a lot of hooey out there. However, in terms of Multiple Myeloma, I have honestly not run into much 'hooey.'

You have found one of the better sources of information on Multiple Myeloma by coming here. There are others; many others. Look for information from respected cancer treatment centers and universities; the Cancer Society; Shoot, just entering 'Multiple Myeloma" in a google search will get you good, solid information...to the point that you would have to go a couple of 'pages' in before you started seeing the hooey.

As for me, because my own doctor tried keeping test results from me, and treated me like an an hysterical idiot, I simply gave up on him. I did my own research, and when the time came for 'the talk,' (when he had a nurse come in and sit by me to handle the predicted breakdown) I was the one who told HIM what the diagnosis was, right down to the staging and the fact that I have 'high risk" myeloma. I was prepared, I had done my research, and I knew what my options were.

....something I would not have been, or known, if I had 'avoided the internet."

.....OK, rant over.

I WOULD suggest that you double check everything before you swallow it whole, though. ;) Don't avoid...but do be a careful researcher.
Learned in church today: 1. study consistently, because you never know when the Bishop is going to give you ten minutes notice to give a talk on how to study. 2. Pray often. See #1.

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Just found abnormal protein level

by Dr. Ken Shain on Sun Jun 02, 2013 8:47 am

I am sorry to hear that you are going to have to wait that long to get things moving and carried-out. I can only imaging how frustrating that must be. But at least it sounds as if you are doing quite well inspite of some slowly progressive changes in Hgb and Creatinine. Getting the entirity of your myeloma labs, a bone marrow biopsy and a bone survery will be critical in defining the inactive vs active nature of your plasma cell disorder. Remember we are looking for the CRAB-I signs of end organ damage (caused by the myeloma)- HyperCalcemia, Renal (kidney) failure, Anemia, Boney lytic lesions, and increased serious Infections.

MGUS is moniored every 6 months (M spike <3gm & Bone marrow PCs <10% & no CRABI). Smoldering multiple myeloma is monitored every 3 months (M spike >3 and/or PC >10% & no CRABI).

Dex or other steroids are a major component of most therapies for myeloma. However, there are steroid sparing regimens. In your case, I would not shy away from steroids. There are mechanisms (oral medication and Insulin) to control your blood glucose IF it becomes a problem on therapy.

I would not stop the ARB for Sarccoid at this time and especially not without letting whomever is Rx for you.

The biopsy will be quite important for answering a number of questions- not just percent plasma cells, but to also identify important risk features and others.

The itching is curious- from you serum IgG kappa levels posted it seem unlikely. However, this may be either the sarccoid or the myeloma. Both would rare presentations for either. Have you tried Benadryl or Zyrtec?
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

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