Monoclonal Gammopathy

Hello

I have just found this site and what a relief it is to be able to communicate with others. I was found to have MGUS almost 6 months ago and am coming up shortly for my first checks. Sitting on a time bomb describes it very well, although for the most part I tend not to even think about it, when it pops into my head it's a different story!

I look forward to popping in when I can and look forward to getting to know you.

Caren, I found your post by accident. I also have MGUS. Like you, while I try not to think about it, sometimes it just pops in your head. I sometimes feel like I am sitting on a time bomb as well. It sure makes you think about the future and how it is affected by the diagnosis.

Hi Tommy

Good to get your message. I don't get on here too often, but will try to pop in once a week or so. Just had first checks and spike is the same but now I am very low in iron for some reason and taking the pill every day :-) Here's hoping for a more awake me! How are you getting on?

Caren

Caren, Glad to hear that your tests came out well. I have been for my first follow-ups as well and the counts are consistent. I was glad to hear that. I go back at the end of March for another set. MGUS is one of those things that you try not to think about but sometimes when you wake up you can't get it out of your mind. I hope you continue to do well. stay in touch.

Tommy

I was cruising by checking on any new news on MGUS (still hard to understand when, where, and how it came to me. Was diagnosed 4 years ago after a liver transplant at the Cleveland Clinic. So many other problems due to immuno suppression that this has been overlooked. I hope everyone here is stable and in stasis in regards to possible progression. Will be back .

DonnyG. in Toledo, Ohio

Hi Frank,

I just signed on today to this web site and forum. After reading your letter, am glad I did. I have also chosen to ignore this - sounds like similiar reasons - have too many other conditions to worry about any of them: MGUS; Lupus E; Rheumatoid & osteoarthritis and some kind of heart condition...seems that there is not much that can be done about any of them so, except for heart medication, I take supplements for pain and inflammation and forget the whole thing..don't see doctors except for a visit to my primary doctor a couple times a year. They don't like it, but it seems to work for me.

Glad your wrote, ... thought I was alone in this response to what could be a maddening cycle of doctor visits, procedures, and medications.

Thanks,
jouel

My father was diagnosed with MGUS. I am his daughter, and we are all (his family) still trying to figure it out completely. What is most confusing is he has lytic bone lesions several places. Could these be a form of cancer in and of themselves? Do we push for a biospy of these lesions? He also has compressed bone fractures on his back. Do you have bone lesions? Still searching for answers!

I just signed on so I am not sure how this works, but I have just read that your Dad already has lesions. I would not like that at all.

If I were you, PLEASE INSIST on going to another oncologist for a second opinion.

MM is not a cancer that all oncologist's see too often or take care of. Please also get copies of every test he has already taken....Please do not wait.

Best regards~~

Hi Jo w.

I just signed on today too. I, also, have been dixed with MGUS, Lupus, COPD, connective tissue disorder, etc. etc. I have had this for the past 10 years.

Until 6 months ago, I finally told my oncologist I no longer want to be tested every 3 months.
And for those poster's that have stated they feel as if a bomb is on their head....that is the same feeling we all feel....or rather like playing a game of Russian Roulette.

MM runs in my family. Three of my father's brother's passed on with it. On my Mom's side, my grandmother and my mother's first cousin...which are blood related on both sides...passed on from Waldenstroms cancer.

In most cases, MGUS NEVER progresses to MM so to all the poster's upset and nervous about this....please don't be. It is only for a small percentage of people that MGUS turns into Multiple Myeloma.

I have now decided - as you did - to ignore certain things. In some articles I have read, the lupus may kill off the cancer cells.

On the other hand, I live on asprins and valium for nightmares. The anti-depressant - the only one that actually worked - SOMEWHAT - made me very tired. I am stopping that also.

The lupus attacks my lungs....or any other part of my body when it feels like it. DO NOT get shots for pneumonia, flu, tetnus, etc. In fact, I never had pneumonia in my life UNTIL I received that shot! I also found out that Sulphites --- like in wine---make my bones and joints hurt the folowing day. So if you don't feel good, think of what you ate or drank the day before.

With both of us, I find the less I think about it the better I feel. If I'm hungry, I eat...if not, I drink Ensure. I also always use hand sanitizer. If I'm tired, I sleep. For people not having lupus...it is not a regular tiredness...it is one of complete exhaustion.

My Onc blood tests are next week. I have not had a BMB for 2 or 3 years which I know the doctors are not happy about...but this is my decision. My IGG averages 3900....My IGM and IGA were finally in the normal zone....at least 6 months ago. I have the M spike...the protein...Bence Jones...but my Kidneys are still fine and no lesions. The last BMB was 8%.

Yes, my family all gave their blood for research for familial cancer. There is also hodkins and breast cancer....both survivors from my father's side also. Frankly, I am a DNA mess....BUT still a survivor.

I am glad I am not alone either.

Dear Iris,

It must be fate. ...haven't signed on since I last wrote - and there was your letter, written the day before.

It does seem like we share some of the same conditions, although my IGG count is 1625, down from my last results. My IGM is low @ 23, so maybe, they cannot be compared. Being that may be so, I don't know if my supplementation would be appropriate for you. I take curcumin for the inflammation, which works very well. I also take fish oil capsules - very good, L-Arginine for HBP, works well. I also take the usual: multi vitamin-mineral, C, E, calcium-magnesium, and a host of other supplements. I don't have the destructive results from the supplements as I experienced from meds which I did take for a short time, and am pleased with the results.

I do wish you well. Try to find a doctor who has knowledge of alternative medicine. ...hard to find. I don't think I would do it on my own, if I were you, but a search, or a recommendation from another doctor for one knowledgeable in this field, I feel might be worthwhile.

Let me know if you feel my suggestions are something you are interested in. Good luck.

By the way, it was nice to hear that lupus might be good for something: murdering those nasty MGUS cells. Thanks for the info.