CancerCompass message board discussion started by Petal on 1/16/2005 http://www.cancercompass.com/message-board/message/all,1483,0.htm Fri, 29 Aug 2008 00:00:00 GMT Fri, 29 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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. Petal Sun, 16 Jan 2005 00:00:00 GMT 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. Tommy Sun, 27 Feb 2005 00:00:00 GMT 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 Petal Mon, 28 Feb 2005 00:00:00 GMT 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 Tommy Tue, 01 Mar 2005 00:00:00 GMT 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 Donnygull Wed, 02 Mar 2005 00:00:00 GMT 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 Jouel Thu, 16 Jun 2005 00:00:00 GMT 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! Youngest Thu, 07 Jul 2005 00:00:00 GMT 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~~ Shannahabbeyreilly Mon, 08 Aug 2005 00:00:00 GMT 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. Shannahabbeyreilly Mon, 08 Aug 2005 00:00:00 GMT 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. Jouel Tue, 09 Aug 2005 00:00:00 GMT Jo w.......I am happy you are still here. I try to eat as healthy as possible. Instead of all the supplements, I eat alot of sardines in oil which is supposed to be very good. I also found that beef bothers my stomach so I try and eat at least some 1 or 2x a month. Truthfully, the less I eat, the better I feel. I was dx with everything within a two week period going from doctor to doctor and was told, at that time, to put my things in order. So for all the MGUS people....try not to think about it. You will all be here for a long time. One thing for sure is that if anyone is going for a BMB.....try to find a doc that will put you to sleep! The first time they gave me tranquilizers...forget it! I couldn't stop screaming. So for all my BMB's, I go to my favorite onc....the one that takes care of all my families blood (I am in a research program for familial cancer...in the Bronx, NY)puts me to sleep. Your Igg is normal! My Igm is 49 but at least higher than it once was at 10. Regardless of all of this, I am still here after 10 years of this! The only good point is that every doctor wants me....that means trouble for me. They like the unusual cases so when I call, they listen. (smiling) How did you know my name is Iris? I think I was told my SN had to be 30 letters long so I just used my doggies name's. Shannahabbeyreilly Tue, 09 Aug 2005 00:00:00 GMT Hi Iris, Your name is posted as your screen name on the reply page. ...sounds like you are, indeed, doing a fabulous job coping with your medical history and it's consequences. It shows alot of courage and patience, which you must have in abundance. You're right about the sardines being superior to the fish oil supplements. Salmon is the greatest also. I like the canned. I stay away from beef and only occasionally will have a pork chop. I'll stand by supplements, however. I believe certain herbs,etc. have helped keep the lupus and, possibly, the MGUS in a manageable range. I also credit supplements with the fact that I'm told I look at least ten years younger than my actual age - so that ain't bad either. With your courage and perserverance, I believe you will continue to make liars out of the docs. I wish you well. Jouel Wed, 10 Aug 2005 00:00:00 GMT Howdy, Was just roaming the web looking for information or groups about MGUS. 2 weeks ago the tests came back and had my first chat with the doctor yesterday about it. I'm still much in the dark as the big words tend to blow by me rather easy. I have more appointments coming up and sure I'll learn more than I may want to know. I'll drop by about once a week. Right now there are so many things going on I can't keep it all straight. I guess the Melanoma I had on my head has been the most serious so far. It was removed in 2003 and so far so good. Does anyone know of other MGUS forums online?? Howdy Fri, 28 Jul 2006 00:00:00 GMT Hi.. I am also new to this forum I was diagnosed with MGUS with peripheral nueropathy in May 2006. I still feel that they have not done enough testing. They found the MGUS and stopped there after checking for MM. I feel that the MGUS is just coincidental. My nuero does not discuss or explain anything so I have researched on my own and am hoping to get a second opinion. There is an excellent forum at www.choosehope.com go to discussion groups on home page. There is a forum exclusively for MGUS and everyone there is great. Hope to see you there. Tired of the pain and not being able to walk from time to time. Wishing for a miracle.... Little Mermaid Littlemermaid Sun, 06 Aug 2006 00:00:00 GMT I am 73 years old and have been going to a oncology doctor for eight years. I have PXE a connective tissue disorder also. I am begining to wonder if the connective tissue disorder may be a part of this MGUS? If you know please let me know.My blood test has not gotten any worse in eight years. Thanks Willene Janice1950 Fri, 22 Sep 2006 00:00:00 GMT I am happy to have found yhis sight. My understanding is much better now. My test(protein) showes 17, but it has been as high as 21. To see if we are talking of the same test, the doctor said 7 was normal. This I have been tested for since age 65 I am now 73 years old. I also have PXE a connective tissue disorder and somehow I think the two are associated. I am not told much by the doctors but I have other conditions also, I believe to be because of the PXE. Thank you for answering me and thank God it has not got worse. Willene Janice1950 Fri, 22 Sep 2006 00:00:00 GMT I was told from the haemotologist yesterday that I had this (MGUS) I have never heard of this before ... is this a rare thing? I have been on the computer researching this and have scared myself out of my wits. I'm still not 100% sure what this is all about and not sure I want to know anymore at this point. I don't see the haemotologist (sp?) until February 2007. Because i have this does this mean I will have to go for tests all the time? I was also told that I have Mixed Connective Tissue Disorder in the form of Raynaud's, to which the doctor asked if i wanted to see a immunologist specialist (???) My head was swimming while i was in the doctors office so I am not sure i have any of this info right. I am 31 years old. Can this happen at any age? This has been such a horrible year so far with family members and friends of mine being diagnosed with cancer .... I feel so bummed out and scared right now. Thanks for listening, I just feel a bit lost right now. Michy Tue, 17 Oct 2006 00:00:00 GMT I was just wondering if the liver could be a part of MGUS. I also have PXE. There is so much to learn, I also have a fattie liver. Does any one know if this all is connected. Thanks Willene Janice1950 Wed, 18 Oct 2006 00:00:00 GMT Hi, I was diagnosed with MGUS 20 years ago (thats right 20- years!) It was really scary to start with as my Haemo gave me virtually no information, just that I would have to be checked every few weeks to check my levels. it then became every three months. This went on for 8 years and my haemo left the hospital. His replacement said I only needed to come annually which meant I could virtually forget about my 'illness' until my appointment came around. By co-incidence, I have found this site today and my appointment is tomorrow. My health has declined in the last couple of years and I am not sure if it due to my age (I am 64 now), or the MGUS. However, I just want to give some hope to people who are newly diagnosed. You can live with this 'ticking time bomb' for many many years. Goldenoldie Goldenoldie Tue, 24 Oct 2006 00:00:00 GMT Hi there, I am 38 years old and I have just found out yesterday that i have got MGUS. I am still confused how should i feel. some how i am feeling guilty and sad since i told my mother the test was completely fine and she was so happy. My doctor told me i should not worry and I am not worried and I am not scared (maybe because i do not know about MGUS). tell you the truth, right now i do not know how to feel.can I want just compeletly forget about it and get on with my life? Thanks for listening sobrina Sobrina Thu, 09 Nov 2006 00:00:00 GMT  On 1/16/2005 Petal wrote: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.Hey my name is Eddie and I to have been diagnosed with MGUS! I never heard  of this and yes I'm worried. I have two beautiful little girls and I'm at a loss for words regarding this thing. Any info or advice would be greatly appreciated. Thanks again.  Roughrider Wed, 25 Apr 2007 00:00:00 GMT