CancerCompass message board discussion started by Cindy d on 5/28/2007 http://www.cancercompass.com/message-board/message/all,12479,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Has anyone been diagnosed with MGUS?  I have alot of questions and have had a hard time finding answers.Cindy Cindy d Mon, 28 May 2007 00:00:00 GMT  On 5/28/2007 Cindy d wrote:Has anyone been diagnosed with MGUS?  I have alot of questions and have had a hard time finding answers.CindyHi Cindy, My husband has been diagnosed with MGUS. About 15 years ago he was diagnosed with Non Hodgkins Lymphoma he rceived chemotherapy for this. It is a protein which your body produces and it should not. I have found most of my answers on the internet. My husband was also diagnosed with Castlemans disease which is very rare and now i am wondering if he ever had it. I expect you are having your blood checked reguarly my husband goes every 3 months. From the information i have found out you can have this condition for years without ever having to have treatment. My husbands problem is he also has Periphial Neropathy we believe this was caused by the chemotherapy he had in 1992. This has caused him to lose a lot of mobility. My main message to you is ASK THE QUESTIONS when you see your consultant i find they do not give out information unless you ask. I tend to do research and then when we see the consultant i have the questions to ask.hope this helps. bessmeg Sun, 29 Jul 2007 00:00:00 GMT Hi Cindy,Just reading your email response to Michelle.  Michelle, yes I had a lot questions as well when I was diagnosed with Mgus in April this year.  Talk to your doctor and report anything you thing might be unusual. Make a list and bring it with you and let your Dr. know you need to schedule time to talk to him.Cindy -I was diagnosed with Hodgkins Disease back in 1997 and had a recurrence in 1999.  I had chemotherapy and radiation. My oncologist does not relate the Hodgkin's and or my treatments to my recent Mgus diagnosis.  I don't have any other issues to report other than on going fatigue, feeling run down - My question is does and or has your husband's medical staff explained that your husband's previous cancer is not related to his Mgus diagnosis?  Thank you for your time.  I have yet to meet or read about others who have Mgus and cancer previous to the diagnosis.  My best wishes for good health to you and your husband and to you Michelle and to all. Patti Pattin Thu, 30 Aug 2007 00:00:00 GMT Hi Cindy,I was diagnosed with MGUS in 2005, after a bllod test becasue of extereme fatigue, back pain and recurrent shingles. I have had no progression, but have a blood teste each year.I asked many questions of my DR. he says I have a moderate risk of deveoping Myeloma, as about 25% of those with MGUS will eventually progress.I do have recurrent infections, low immunity and resistence to infections, and low energy in general. Dr. says these are not related to MGUS, btu when i read his report to my GP, he said MGUS could be associated with chronic infections and autoimmune disease.I feel like this is a time bomb. I wonder how much time I have before things progress. VOLPEAVOL Tue, 04 Sep 2007 00:00:00 GMT  On 9/4/2007 VOLPEAVOL wrote:Hi Cindy,I was diagnosed with MGUS in 2005, after a bllod test becasue of extereme fatigue, back pain and recurrent shingles. I have had no progression, but have a blood teste each year.I asked many questions of my DR. he says I have a moderate risk of deveoping Myeloma, as about 25% of those with MGUS will eventually progress.I do have recurrent infections, low immunity and resistence to infections, and low energy in general. Dr. says these are not related to MGUS, btu when i read his report to my GP, he said MGUS could be associated with chronic infections and autoimmune disease.I feel like this is a time bomb. I wonder how much time I have before things progress.I was diagnosed with MGUS in 2000.  I kept complaining to my Dr. that I was extremely tired and achy all the time and didn't have any ambition.  I am monitored by Roswell Park Cancer Institute and have remained at the MGUS status now for 7 years with no sort of treatment.  When I tell the oncologist at Roswell that I ache and am tired all the time, he tells me it has nothing to do with my MGUS status.  Yet when I read some of these questions and statements from people on here, they say they have extreme fatique and have trouble walking, etc.  I too have trouble walking.......hurts.....so I walk slower than anyone else I am with.  I am 50 years old right now and when I stand on my feet for hours for my part time job bartending, I am in a lot of pain by the end of the night and the following day.  Thank goodness, I sit at my day job in an office!!So....now I believe that my achyness and tiredness truly is from the MGUS status.  Does anyone else have these same symptoms? Glenna Wed, 17 Oct 2007 00:00:00 GMT  On 10/17/2007 Glenna wrote: On 9/4/2007 VOLPEAVOL wrote:Hi Cindy,I was diagnosed with MGUS in 2005, after a bllod test becasue of extereme fatigue, back pain and recurrent shingles. I have had no progression, but have a blood teste each year.I asked many questions of my DR. he says I have a moderate risk of deveoping Myeloma, as about 25% of those with MGUS will eventually progress.I do have recurrent infections, low immunity and resistence to infections, and low energy in general. Dr. says these are not related to MGUS, btu when i read his report to my GP, he said MGUS could be associated with chronic infections and autoimmune disease.I feel like this is a time bomb. I wonder how much time I have before things progress.I was diagnosed with MGUS in 2000.  I kept complaining to my Dr. that I was extremely tired and achy all the time and didn't have any ambition.  I am monitored by Roswell Park Cancer Institute and have remained at the MGUS status now for 7 years with no sort of treatment.  When I tell the oncologist at Roswell that I ache and am tired all the time, he tells me it has nothing to do with my MGUS status.  Yet when I read some of these questions and statements from people on here, they say they have extreme fatique and have trouble walking, etc.  I too have trouble walking.......hurts.....so I walk slower than anyone else I am with.  I am 50 years old right now and when I stand on my feet for hours for my part time job bartending, I am in a lot of pain by the end of the night and the following day.  Thank goodness, I sit at my day job in an office!!So....now I believe that my achyness and tiredness truly is from the MGUS status.  Does anyone else have these same symptoms?I was diagnosed with MGUS IGg Kappa in 2002 at age 37. I have learnt so much about MGUS and myeloma in the last 5 years but only through the internet, certainly not from the NHS service in the UK they have not been at all helpful when answering questions. I had pneumonia last Christmas and came out of hospital 2 days before Christmas. This year at my worst I had 5 herpes/shingles outbreaks and an ear nose and throat infection in a period of 29 days !! I suffer from terrible fatigue its hard to do anything, sometimes it hard to even think about doing something as simple as cooking the tea or getting dressed. I feel like I have run a marathon somedays with hip and leg ache. I get tingling, pins and needles and my legs feel like they are buzzing sometimes. I am on medication for depression and my dose has recently been doubled but when you are my age and the doctor says he would expect to see my symptoms in an 80 year old, is it any wonder I'm on the happy pills !  My IGg is 43  ( in UK measurements)  I have 13% plasma in my bone marrow and I am due for another bone marrow test to check for progression soon. I guess most people reading this will be from the USA and I just wish you all a very Merry Christmas and all the best wishes for the New Year. Peace, love health and unity to you all.  JaneMGUSuk Thu, 20 Dec 2007 00:00:00 GMT Dear JaneHow are you ? I was so sorry to hear you are going through the same type of hell we are. Like you the NHS has been of little help to my partner who was told he had Myeloma two and a half years ago, this like you has turned our world upside down. His igg is at its highest 41 this goes down to 29 some months which no one gives a reason for. His bone  marrow plasma is at 20 but patchy. I am not sure if he has Mgus or Myeloma as even his notes have question marks on them.Please take heart that there are others wishing you well and hope you find some comfort in that. Best wishes to you Gillian. GillyB Thu, 17 Jan 2008 00:00:00 GMT  On 1/17/2008 GillyB wrote:Dear JaneHow are you ? I was so sorry to hear you are going through the same type of hell we are. Like you the NHS has been of little help to my partner who was told he had Myeloma two and a half years ago, this like you has turned our world upside down. His igg is at its highest 41 this goes down to 29 some months which no one gives a reason for. His bone  marrow plasma is at 20 but patchy. I am not sure if he has Mgus or Myeloma as even his notes have question marks on them.Please take heart that there are others wishing you well and hope you find some comfort in that. Best wishes to you Gillian.Thanks for the reply, I am 42 now, I was 37 when diagnosed with the MGUS. My last bone marrow over a year ago was 13% and my last Igg was 42. I am still MGUS but I am waiting for another Bone Marrow on the 28th Jan, it was supposed to have been done on the 7th Jan but I had yet another chest infection so my haematologist cancelled the biopsy. I thank you for all your good wishes and I wish you all my best wishes too. x  JaneMGUSuk Thu, 17 Jan 2008 00:00:00 GMT Unfortuantetly Mgus does turn into MM much of the time, as I just posted to Gillian, you need a healthy diet and lots of immune system boosters.  Read that post for a few ideas.  The medicial profession is so busy they just rush us all through the system...All the best. MMSOn 1/17/2008 JaneMGUSuk wrote: On 1/17/2008 GillyB wrote:Dear JaneHow are you ? I was so sorry to hear you are going through the same type of hell we are. Like you the NHS has been of little help to my partner who was told he had Myeloma two and a half years ago, this like you has turned our world upside down. His igg is at its highest 41 this goes down to 29 some months which no one gives a reason for. His bone  marrow plasma is at 20 but patchy. I am not sure if he has Mgus or Myeloma as even his notes have question marks on them.Please take heart that there are others wishing you well and hope you find some comfort in that. Best wishes to you Gillian.Thanks for the reply, I am 42 now, I was 37 when diagnosed with the MGUS. My last bone marrow over a year ago was 13% and my last Igg was 42. I am still MGUS but I am waiting for another Bone Marrow on the 28th Jan, it was supposed to have been done on the 7th Jan but I had yet another chest infection so my haematologist cancelled the biopsy. I thank you for all your good wishes and I wish you all my best wishes too. x   mmsurvivor Thu, 17 Jan 2008 00:00:00 GMT Hi,I just found out today that I have MGUS.  I think that I was so happy that I didn't have multiple myloma that it just hasn't had time to worry about the MGUS. I am also a 1 year survivor of breast cancer as well and get this my husband is in remission for multiple myloma.  He had a bone marrow transplant in 2006.  This was at the same time that I was going through my treatments for my cancer.  He was in the hospital for three months because of complication with his transplant.  That year was not a really good year for us.  He is in remission and is doing well and so am I.  I will be having blood work on a regular basis just to keep an eye on everything and I plan to go on with my life as usual.  I will not let this rule my life.  I wish you the best .  I know you are scared honey, we all have those times but believe me it will get better.  The chances of this becoming something bad are in our favor.  If it does then they know how to fight it so hang in there and God Bless you. 1923gram Tue, 22 Jan 2008 00:00:00 GMT Hi all. since my last posting we have been having a lot more attention and are being seen by several consultants. My husbands mobility has worsened and he now has a wheelchair as he is limited to walking more than 25 yds. After researching on the internet i asked 2 of the consultants if he could have POEMS sydrome another rare disease. He has the P and the M and also the castlemans which after reading are connected with this condition. After another CT Scan his lymph glands have got bigger but the chemotherapy he had in 1993 did not touch these we have now been told and Radiotherapy worked better. We have been told he can only have one more treatment of radiotherapy and the consultant wants to hold back with that at the moment. He is being monitored a lot more closely and our Heamatologist is consulting with others as to other forms of treatment. Meanwhile he is taking steroids for the periphial neuropathy hoping this will stem the damage to the nerves. His protein level is not too high at the moment and he is feeling quite well in himself. I found the information on POEMS sydrome from the Rare diseases database. As castlemans is also on their. Hope all of you who have responded to the previous messages keep your spirits up. Please keep us posted of any new developments. Also keep asking the questions to your consultants. Research yourself so you know what to ask. I am in a lot better frame of mind now. God bless you all.  bessmeg Wed, 23 Jan 2008 00:00:00 GMT