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Weekly polls of the Myeloma Beacon's readers on topics related to multiple myeloma. A new polls is posted every Wednesday.

What type of myeloma or myeloma-related disease do you have?

Poll ended at Wed Feb 15, 2012 1:07 pm

Multiple myeloma (symptomatic / active)
83
75%
Smoldering multiple myeloma
18
16%
Monoclonal gammopathy of undetermined significance (MGUS)
4
4%
Other
5
5%
 
Total votes : 110

Weekly Poll – Current Type Of Myeloma - 2012

by Beacon Staff on Wed Feb 08, 2012 1:07 pm

This week’s poll question is about what types of myeloma or myeloma-related diseases Beacon readers have.

A few clarifications:

First, this question is open to readers with any myeloma-related disease.

Second, if you are a caregiver or family member of someone with a myeloma-related disease, feel free to answer on their behalf.

If you select "Other", please post a comment below to let us know what type of myeloma-related disease you have.

As always, feel free to post additional thoughts, feedback, or comments in the space below. They can be very useful to other readers.

Beacon Staff

Re: Weekly Poll – Type Of Myeloma

by Nancy S on Wed Feb 08, 2012 1:53 pm

My multiple myeloma is 'inactive' now.

Nancy S
Name: Nancy
Who do you know with myeloma?: self
When were you/they diagnosed?: July 2009
Age at diagnosis: 58

Re: Weekly Poll – Type Of Myeloma

by Art on Wed Feb 08, 2012 2:03 pm

I posted other because it depends on my Hemoglobin reading at each test. I bounce around a bit and I can go either way. I am smoldering at times and early multiple myeloma at times. I'm right on the border. By definition anyway :). I was recently at the NIH and they consider me smoldering even with a Hemoglobin of 11.4. It seems that of all the CRAB criteria the Hemoglobin can be relatively "soft" as an indicator?? At least that was my understanding of it.

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

Re: Weekly Poll – Type Of Myeloma

by Tj on Wed Feb 08, 2012 5:09 pm

Hi, I was first diagnosed with mb waldenstrøms 19 years ago, but last year I got this IgM MGUS diagnos. Might have been MGUS all the time they thought. I am 40 years old and woman.

Tj

Re: Weekly Poll – Type Of Myeloma

by Dan D on Wed Feb 08, 2012 5:48 pm

Not only are HB readings soft and bounce around, but I have read they should NOT necessarily be the sole basis for treatment if the patent is otherwise symptom-free. In individuals with high M-protein levels, for example, a low Hb reading may be an artifact of increased dilution of the blood. Indeed, I have read the following (e.g., Miguel et al., Hematologica 84, 36-58, 1999):

When the tumor mass is relatively high (i.e., serum M-protein of 40 to 50 g/L and proportion of bone marrow plasma cells in the range of 30 to 40%), the hemoglobin level is usually below the normal limit. In this setting, a MODERATE degree of anemia is NOT a criteria for initiation of treatment in otherwise ASYMPTOMATIC myeloma.

There is also an small proportion of patients with non-responding, non-progressive myeloma. In our experience, these patients usually present with a high serum M-protein concentration, particularly of IgG type, a high proportion of bone marrow plasma cells, MODERATE ANEMIA, bacterial infections or symptoms of mild hyperviscosity, but they have no lytic bone lesions, hypercalcemia, renal insufficiency or extramedullary plasmacytomas. These patients are usually
treated with chemotherapy because of anemia or recurrent infections. If no change in their paraprotein level and clinical status is observed after 4 to 6 courses of chemotherapy, these patients should NOT be given further chemotherapy until evident disease progression occurs. It is of note that, although these patients are normally classified as non-responders it has been recognized that in fact they have a prolonged survival because of temporarily non-progressive disease.

In contrast to these observations, I am annoyed by doctors -- including one I saw -- who tell patients that they will likely erequire many, many months -- if not years -- of treatment to get their protein levels down. Hmmm.... is that a good thing? Or is actually unecessary, over-aggressive, toxic therapy that may ultimately accelerate malignancy and progression. I know these statements are before Velcade -- but the concepts still seem applicable.

Dan D

Ignore the last post: it is in the wong place and has been m

by Dan D on Wed Feb 08, 2012 5:51 pm

Ignore the last post.

Dan D

Re: Weekly Poll – Type Of Myeloma

by Terry L on Thu Feb 09, 2012 7:42 am

Hi Dan D,
Thanks for the link to Dr. San Miguel's Hematologica article. Some of the outlined therapies are obviously outdated--it was from 1999--but most of it seemed relevant today. I know Dr. San Miguel is today one of the world's leading authorities on myeloma and he has written extensively on myeloma, i.e. the famous Spanish study. Like Art, my hemoglobin bounces around and is usually about 12.0 plus or minus 0.3 or so. Also, it should be noted that the reference ranges for hemoglobin differ from one hospital or lab to another. The key is 2.0 below the lowest normal range---At the NIH, for a 40ish man, it is thus 11.7; at UPenn it is 11.5; at Labcorp it is 10.5. These are the three places I have my blood work done at and they are all different. Clearly, as you say, of all the CRAB criteria, anemia seems to be the softest. One of my doctors even told me that he has seen patients who have had their hemoglobin steadily drop only to plateau out for a long time in the 11.0 region, thus not needing treatment for a long time. My other doctor told me that theoretically if he drew my blood 15 times in one day, one could have 15 different readings, some above the cutoff and some below.

Terry L

Re: Weekly Poll – Type Of Myeloma

by Anonymous on Thu Feb 09, 2012 1:09 pm

Hi Dan,

That post seems to describe my presentation at diagnosis, but I was very ill.

Really high M-protein (100 g/L), very low hemoglobin (8.0), history of frequent infections, 50% bone marrow involvementy, blood thickening - hyperviscocity due to high M protein, but I did have some lytic lesion (two) show up.

I was very ill and could not eat, stand up without fainting, among many other symptoms. Not sure how it could be called assymptomatic with all the presenting issues?

My treatment was started on an urgent basis! After one round of Velcade, dex etc my protien dropped 50 percent (guess I'm a good responder!). It took a long time to recover a normal hg.

Anonymous

Re: Weekly Poll – Type Of Myeloma

by Dan D on Thu Feb 09, 2012 2:55 pm

Hey Anon and Terry

I think having a spike of 100 and a Hb level of 8 rightfully warrants treatment. And it is great to hear that you responded so well. (I bet your protein was rising rapidly and hence the myeloma was active).

In my case, my M protein is 48 and has not changed (with no treatment) over six months. But as we know, it could jump at any time. Or it might not.

My Hb levels have bounced between 12.5 and as low as 10.5 -- gulp -- but as pointed out in this thread, the measurements have been with different laboratories, so, in fact, always seems to be within 2 units of the lowest reference point. I am not happy with being on the edge -- but I am also not willingyet to getting a port and being hooked up to a bag two days a week -- unless necessary.

I also had a nasty cough/respiratory infection that triggered the initial diagnosis in November and that only recently resolved. So I do wonder where things now stand. In that regard, I have been taking curcumin (8 gm/daily) for about three months -- which is the minimum trial course recommended -- and I will find out within the next few weeks if I can keep myself in a stable state. I have also switched to a large cancer center with expertise in blood disorders, with the goal for obtaining a more thorough assessment, including a PET or MRI scan. I do not want to stave off treatment and then break a rib one day while sneezing; such is the insidious and cruel nature of this disease.

But if I can even hold off for even a year, I would probably be able to receive treatment entirely in pill form.

That said, in my opinion -- and as a research scientist for more than 20 years -- vaccines and targeted immunotherapy still strike me as the most-promising approaches - and ones that do not devastate your immune system and trigger other nasty effects.

Dan D

Re: Weekly Poll – Type Of Myeloma

by Art on Thu Feb 09, 2012 4:07 pm

Hi Dan D
Is the Curcumin you are taking Prescription?

Art
Name: Art
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/2011
Age at diagnosis: 40

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