New MGUS Study/Disease Association

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RE: New MGUS Study/Disease Association

by Carolee888 on Wed Jul 25, 2012 08:47 PM

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The anti-itch one says on the jar-Silver Sulfa 1% cream, it was subsituted for SILVADENE 1% cream.  I am assuming that the Silvadene is expensive.

 

The compounded one says on it 240.00 mI TAC .01% inSARNA Lot-I don't know what that means.

RE: New MGUS Study/Disease Association

by cricket1949 on Wed Jul 25, 2012 09:00 PM

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Thank you - I've been on every kind of cream and medicine you can think of.  I have not been on either of these creams.  Which do you think is better, the compound or the Silvadene?

Thanks again!

Cricket

RE: New MGUS Study/Disease Association

by Carolee888 on Thu Jul 26, 2012 12:44 PM

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If you want anti-itching-Silvadene. Be sure that you are not allergic to Sulfa!!!!

 

 

RE: New MGUS Study/Disease Association

by MtlK10 on Thu Jul 26, 2012 02:35 PM

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Hello guys,

I've been diagnosed with MGUS 9 years ago.  I can see a lot of worried people on this forum and what appears to be a misunderstanding of what MGUS means.  For example, the fact that you have MGUS and itchy skin does not make a direct connection between the two.

Let's go back to what MGUS means: Monoclonal Gammapathy of UNKNOWN SIGNIFICANCE.  Firstly, MGUS is NOT a disease.  It derives from the presence of an unusually high level of the IgM Kappa protein in the blood.  This is called a Monoclonal Gammapathy.  MG is the symptom of an underlying condition that could be benine, could be only the result of a chronic condition or could be related to a serious malignant condition.  No Hemato-Oncologist can give you a diagnostic of MGUS unless they have conducted a series of tests and concluded that the MG cannot be connected to any detectable condition that would cause the MG.  That's why, at that point, it is called MGUS.  It means that you do not have any identifiable condition that would explain the MG, therefore the MG is of unknown significance.  Of course, it could still mean that it is caused by a benine condition or something dreadful that was not identified.  But considering that so many tests should have been performed and that they have eliminated all the known associations including the dreadful ones, it means that it is highly likely that it results from a condition that is not of real concerns.

So, as my wise old Hem-Onc said, once they have narrowed the diagnostic to MGUS, it is highly unlikely that one will die from something associated to the condition causing the MG since it is unlikely that this condition is serious, otherwise it would likely have been identified in the tests.

I strongly believe that by connecting all your physical symptoms to MGUS, you are focussing on the wrong culprit.  There are so many reasons that could explain frequent flu, colds, itchy skins including stress, the stress caused by the worries over a diagnostic of MGUS.  Also keep in mind that MGUS is prevalent in 3% of the population so if you have one condition and get tested for MG, it is not unlikely they will find MG although it is not related to the condition.

Live your life, monitor your IgM Kappa every year and ask for a new investigation only if there are significant changes in the levels.  Rest of the time, forget about it.

Cheers!

NOTE: You may also wish to refer to my post of July 11, 2010 where I was providing more details of my own ordeal with MGUS.

RE: New MGUS Study/Disease Association

by Carolee888 on Thu Jul 26, 2012 03:04 PM

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Hi MtlK10,

I think that most of us on this forum are familiar with the facts that you have presented about MGUS. I was told in the past that there are not many medical problems associated with this disease, there are some rare ones but we shouldn't bother ourselves with them. I think that you will agree that it is wise to monitor everyone who has MGUS. This is because there still is a chance there is a chance that Multiple Myleoma will develop.

Now as to the itchy skin. Please let me tell you my experience. Over a year ago, I started to have extremely itchy skin on my upper back. The first dermatologist I went to said he thought I had "bug bites". I wasn't happy with that since itchiness started before there was any lesion.

Two months later, I told my primary doctor that the lesions were getting worse and I wasn't satisfied with the 1st daignosis. I went to the second dermatologist. She decided that I must be allergic to bug bites. That since I did have a chigger bite on my leg it must have caused the itching and lesions on my upper back.

Two more months later, I talked to my oncologist who referred to his dermaatologist. That dermatologist has excellent credentials. He graduated from Harvard Medical School with Honors and received an award for a special study. When I saw him, he instantly knew that it was Nodular Prurigo, a very rare Auto-immune B cell skin disease. He said that he knew from my history that I had MGUS and he had seen several people with Nodular Prurigo who had IgG Kappa Lambda. Of course, my mouth hung open! I was put on a series of UVB light treatments, prescribed a compounded medicine and a sulfa cream to contol the itching. Now after suffering from this strange disease, I am finally not itching. I joined a support group for it and found out that the itching can be so intense that some people have had to have skin transplants. Some of them are afraid to go out of their house because they have lesions on their face! I have them on my arms and legs in addition to my back but they are all healng.

I really think that this merits at least one study to find out if indeed there is a connection between IgG MGUSS of the Kappa Lambda variety and Nodular Prurigo but this skin disease is so rare that are only a small handful of studies.  So I am saying to people in this support group, that if you have extremely itchy skin to go see a dermatologist. Also, with my experience, this rare disease wasn't considered by the 1st and 2nd dermatologist, they may not have been aware of it. Please ask the dermatologist to consider if this qualifies as NP. People asked me what kind of treatments I had and I am happy to tell them, it is up to the dermatologists to determine if they are appropriate. I know the misery of extreme itching.

 

RE: New MGUS Study/Disease Association

by MtlK10 on Fri Jul 27, 2012 05:58 AM

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Hello Carolee,

I am very sorry to hear about that serious skin condition you are suffering from.  I'm happy to hear they found a correct diagnosis and a cure.

Maybe I did not make myself clear in my previous post but what you are saying proves my point exactly.

Let's first say that I completely agree with you.  It is wise to monitor one's IgM Kappa levels (not MGUS levels since MGUS is the condition, not the indicator) and I said so in my post.  I do a test every year to measure the levels.  I also said that should the level of IgM Kappa increase significantly, one should most definitely have his Hem-Onc conduct further investigations to attempt to find the cause of the increase.  Again, Monoclonal Gammapathy is only the symptom of an underlying condition which, for all of us, is unknown, thus the diagnosis of MGUS.  If they find the condition explaining the high level of IgM protein, then your diagnosis is no longer of MGUS because the significance is known.

When I said that MGUS and itchy skin are not necessarily connected, I did not mean it cannot be connected.  It is quite possible, in your case, that Nodular Prurigo was the condition causing the high levels of IgM Kappa.  However, not everybody with itchy skin suffer from Nodular Prurigo and not everybody with MGUS have itchy skin or suffer from Nodula Prurigo.

Thus my point was directed at some people on this forum who wonder why they don't treat MGUS or who connect their known condition to the high levels of IgM Kappa as if there was an obvious direct connection.  Treating the high levels of IgM Kappa is possible but not recommended.  Because what needs to be treated is the underlying condition explaining the high levels, once it is identified.  Unless the high levels of IgM Kappa are causing secondary effects, there is no point to intervention since the treatments are invasive and more likely to cause damage to the body than the unknown condition causing the high levels of IgM Kappa since the test leading to the MGUS diagnosis have eliminated the most dreadful causes known to cause high levels of IgM Kappa.

In your case, your skin condition may explain your high levels of IgM Kappa and they may have found the cause.  What I would like to know is whether high levels of IgM Kappa can be indicative of a person suffering from Nodular Prurigo.  Or is Nodular Prurigo a secondary effect of high levels of IgM Kappa.  That is what would be interesting to know. In the first case, it would mean that Nodular Prurigo is another condition they need to investigate before coming to a diagnosis of MGUS.  In the second case, it means that a person with high levels on IgM Kappa is likely to suffer eventually from Nodular Prurigo. 

Keep well.

RE: New MGUS Study/Disease Association

by cricket1949 on Fri Jul 27, 2012 02:19 PM

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Hello,

I think you are wrong when you say "If they find the condition explaining the high level of IgM protein, then your diagnosis is no longer of MGUS because the significance is known."  There have been people on this blog who had the severe itchy skin, diagnosed with MGUS and later diagnosed with MM and vice versa - MGUS, MM, then the itchy skin.  There are more and more dermatologist and onc's who believe MGUS and itchy skin are strongly related and that it does not rule out later problems with MM or other cancers.  Nor does the M protein necessarily elevate due to NP.

I think most of us realize that itchy skin may or may not be related to the MGUS.  My onc doesn't think itchy skin from MGUS is related but other onc's and dermatologist do.  

As for me, MGUS, MM, etc. are the least of my worries - I know where I'm going when I leave this earth.  Not to mention there is less than a 1% chance of becoming MM.  However, the itchy skin is driving me nuts as is the case with others.  Therefore, the blog has been a good tool for us to share with others who are suffering from this horrible itchy skin.  Information I have received from others on this blog has been very helpful for me and to my dermatologist.  I can't speak for others but everything you've just written about I already knew.  I started blogging on this site to see if I was alone in this battle against itchy skin as no one was able to determine what was causing the break-outs and severe itching.  My dermatologist is the one who referred me to this site.  He also feels that there is indeed a connection between MGUS and itchy skin.  This itchy skin is not bug itchy, it is severe, deep, and almost constant.  This was the reason my dermatologist researched my MGUS and led me to this blog.  Every so often I find someone who was relieved of their itching problem or my dermatologist finds someone who was relieved and we try what we've seen suggested on this blog.  

If you interpreted our blogs as fear I think perhaps you are mistaken - it is more of a "can anyone relate or help" situation.  Just as cancer patients blog with other cancer patients, this site has become a place where "itchy MGUS patients" can blog and help one another.

RE: New MGUS Study/Disease Association

by Quincypp on Fri Jul 27, 2012 04:39 PM

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Is this available in printed format anywhere?

RE: New MGUS Study/Disease Association

by cricket1949 on Fri Jul 27, 2012 08:12 PM

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The info I got was from blogging with people on Cancer Compass and a couple of my Dr.'s.  If it weren't for this blog my condition would be worse than it is now.  I have received info from other MGUS patients that has been helpful - and now I have new info due to the blogs above regarding "sulfa" and UVB light therapy.  I'm sure Dr.'s have something in writing but as I said earlier not all onc's agree on the subject.  Furthermore, not all dermatologist even know about MGUS let alone Nodular Prurigo.  I have looked into MGUS and Nodular Prurigo on the internet.  There is a lot of info but I feel sometimes I feel the less I know the better.  Right now my only goal is to get rid of this itching.  It feels like it goes all the way to the center of my bones and muscles.

RE: New MGUS Study/Disease Association

by Carolee888 on Fri Jul 27, 2012 09:38 PM

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Thank you Cricket,

I appreciate your posts. I really think that this group is meant to be helpful to each other rather than a forum for debate. I hope that your itching stops soon.

 

Good Luck,

Carolee

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