CancerCompass message board discussion started by melanie and carol on 3/14/2008 http://www.cancercompass.com/message-board/message/all,21979,0.htm Thu, 04 Dec 2008 00:00:00 GMT Thu, 04 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello everyone,It has been a long time between messages, but we have been waiting on doctors..Our usual story. Mum tried Thalidamide with no success as she suffered the severe constipation. Then we thought we could try Velcade ??? Doctor could not fill in paperwork and didn't know if mum was a candidate.We waited yet another month with mum's pain getting worse and her cravings for citrus and water inclined. We knew things were not good. I often asked doctors what stage she was at and what type of MM mum had but I was always told that it is hard to measure as everyone is different. I discovered through research of my own and with the help of our FAMOUS CATH!!!!! that she has Bence Jones Myeloma or Light Chain Myeloma. Which can cause nasty Kidney damage... Today we finally went back for the bad news.  Mum has gone into Kidney Failure and her MM has progressed. We now are able to be treated with Velade but still have to wait two weeks. Whilst we are waiting mum is on a very high dose of Dex, which causes bad side effects for mum. She becomes a giant bullfrog.Has anyone had renal failure and please tell me of your experience good or bad. We have been told that mum has a 70% chance of recovery from kidney damage if not dialysis is the other option.. Cath/Bob I was going to email you seperately but thought I would post a message to here so I could get some feedback. I was an absolute mess this morning (worse than mum) but I am now focused. I had a word with doc on the ward and expressed my frustrations as Outpatients told us that the Registrar was trying to call us for the last few days??? BULL!!!!I am working on mum to go to Peter Mac once this ordeal is over. For a second opinion...I dont want to force her but I feel it is time I really intervened as I am not happy with the information presented.. I believe that I dont want to just here the verdict but I want to know WHY AND HOW they reached thier conclusions...I will keep you informed and Cath my dear....Iwish you well you are my mentor and Im happy I have you....Please call me if you wish or send a private email...XOXOXOMelanie  melanie and carol Fri, 14 Mar 2008 00:00:00 GMT Good Evening Melanie;Diagnostic criteriaIn 2003, the International Myeloma Working Group[1] agreed on diagnostic criteria for symptomatic myeloma, asymptomatic myeloma and MGUS (monoclonal gammopathy of undetermined significance):Symptomatic myeloma: Clonal plasma cells >10% on bone marrow biopsy or (in any quantity) in a biopsy from other tissues (plasmacytoma) A monoclonal protein (paraprotein) in either serum or urine Evidence of end-organ damage (related organ or tissue impairment, ROTI): Hypercalcemia (corrected calcium >2.75 mmol/L) Renal insufficiency attributable to myeloma Anemia (hemoglobin <10 g/dL) Bone lesions (lytic lesions or osteoporosis with compression fractures) Frequent severe infections (>2 a year) Amyloidosis of other organs Hyperviscosity syndrome Asymptomatic myeloma: Serum paraprotein >30 g/L AND/OR Clonal plasma cells >10% on bone marrow biopsy AND NO myeloma-related organ or tissue impairment Monoclonal gammopathy of undetermined significance (MGUS): Serum paraprotein <30 g/L AND Clonal plasma cells <10% on bone marrow biopsy AND NO myeloma-related organ or tissue impairment Related conditions include solitary plasmacytoma (a single tumor of plasma cells, typically treated with irradiation), plasma cell dyscrasia (where only the antibodies produce symptoms, e.g. AL amyloidosis), and POEMS syndrome (peripheral neuropathy, organomegaly, endocrinopathy, monoclonal plasma cell disorder, skin changes). StagingInternational Staging System The International Staging System (ISS) for myeloma was published by the International Myeloma Working Group in 2005:[2]Stage I: β2-microglobulin (β2M) < 3.5 mg/L, albumin >= 3.5 g/dL Stage II: β2M < 3.5 and albumin < 3.5; or β2M >= 3.5 and < 5.5 Stage III: β2M >= 5.5 Durie-Salmon staging system First published in 1975, the Durie-Salmon staging system [3] is still in use, but has largely been superseded by the simpler ISS:stage 1: all of Hb > 10g/dL normal calcium Skeletal survey: normal or single plasmacytoma or osteoporosis Serum paraprotein level < 5 g/dL if IgG, < 3 g/dL if IgA Urinary light chain excretion < 4 g/24h stage 2: fulfilling the criteria of neither 1 nor 3 stage 3: one or more of Hb < 8.5g/dL high calcium > 12mg/dL Skeletal survey: 3 or more lytic bone lesions Serum paraprotein >7g/dL if IgG, > 5 g/dL if IgA Urinary light chain excretion > 12g/24h Stages 1, 2 and 3 of the Durie-Salmon staging system can be divided into A or B depending on serum creatinine:A: serum creatinine < 2mg/dL (< 177 umol/L) B: serum creatinine > 2mg/dL (> 177 umol/L) Perhaps you should share the above information with your Dr. who claims it's too difficult to Dx. what stage your Mom is at. It appears to me to be quite simply a matter of what her levels are after a few blood, urine and bone marrow tests.Then you might want to ask if he mind if you look for another more informed doctor! Good luck with this "professional".Take care;Kevin  K. C. Fri, 14 Mar 2008 00:00:00 GMT Hi Kevin and Thanks,All these stages are mighty confusing. I feel the need to know what stage and the progression.When I asked last night, the doctor said again that everyone with myeloma is different and that he is not majorally concerned with the Bence Jones levels. That is really the only one I understand.I look at it and I know that it is increasing. The other result shown was her kidney function.Normal range of 80.Mum's was 288!!The other one is M something??? I will ask again. Where they measure the amount of myeloma.Again he did not tell me what stage. I am amsuming Stage 3 again. But these docs don't appear to like staging..I dont know!!I am working really hard with mum that once she has hopefully recovered from this that I will take her to Peter Mac.Doc told me that if Velcade does not work they will experiment. At the moment they have no choice but to put her on high dose of Dex untill the Velcade comes through.Thanks again Kevin for taking the time to reply to me..All the best and I will print out your info and see what docs say.  melanie and carol Fri, 14 Mar 2008 00:00:00 GMT Hi Mel honey, We  recieved your call when we came home this afternoon, but figured that you'd be at the hospital so I thought I'd start by responding to your note.  Kevin has given you a very comprehensive staging explaination, but from the sound of it, I don't think that the doctor understands what is going on with Carol.  You really do need to get her back to Peter Mac as soon as possible.  I know that it means trips down to Melbourne, but they have the expertise that Carol really needs at this point!  There is nothing wrong with asking for a second opinion, and making a call to start the ball rolling won't hurt.  One problem that we are all facing is this Easter Nurse crisis -- who knows just how much help we'll be able to get for the next 10 days or so?  At least she is in a hospital now, so you are not having to fight for a bed.  I'll give you a ring this evening and we'll go from there.  Hang in there Mel -- you are her anchor and she really relies on you.  Take care -- please give Carol my love -- perhaps we can come down to visit her, what do you think?  Talk to you later tonight, love, Cath poppy/cath Fri, 14 Mar 2008 00:00:00 GMT Good Evening Melanie;All these stages are mighty confusing. I feel the need to know what stage and the progression. The staging does appear confusing, however, once she has the tests done they will be able to accurately dx. her stage.When I asked last night, the doctor said again that everyone with myeloma is different... I agree that this disease affects everyone differently, but there are still certain parameters that the Dr. should be following.The other one is M something??? I will ask again. Where they measure the amount of myeloma. Shortened it's called the M-spike. They can measure it through blood samples. "Normal" people have 0.0 levels.Again he did not tell me what stage. I am assuming Stage 3 again. But these docs don't appear to like staging..I dont know!! Personally I feel that you shouldn't have to guess. These Drs. should be upfront with you. Why hide anything?Doc told me that if Velcade does not work they will experiment. At the moment they have no choice but to put her on high dose of Dex until the Velcade comes through. REVLIMID is also another chemo drug and is being used together with Velcade more often. Also a new drug is MAPATUMUMAB.All the best and I will print out your info and see what docs say. All the best to you and your Mom and take care;Kevin K. C. Sat, 15 Mar 2008 00:00:00 GMT Bence Jones proteins in the urine are a tell-tale sign of MM.  A person does not develop BJ proteins after diagnosis.  My mom developed kidney failure as well.  I was told it was because of the dye that was used to do the renal imaging. CCs Kid Wed, 19 Mar 2008 00:00:00 GMT You should also be aware that in mm patients, they SHOULD NOT use contrast when doing CT scans.  The injected contrast can cause problems with the kidneys, too.  There is a solution that they can drink before the CT scan, that works in mm patients.  Hope this helps.Jan (we've been there WBT)  wevebeenthere Wed, 19 Mar 2008 00:00:00 GMT  On 3/19/2008 CCs Kid wrote:Bence Jones proteins in the urine are a tell-tale sign of MM.  A person does not develop BJ proteins after diagnosis.  My mom developed kidney failure as well.  I was told it was because of the dye that was used to do the renal imaging.Hi there, Light Chain Myeloma can cause kidney dysfuction. It is a known side effect of this type of Myeloma. Bence Jones is the test in the urine, but I was not referring to original diagnoses. Bence Jones/Light Chain Lamda  Chain Myeloma is the rarest of them all. And I have been told one of the most difficult to treat. I obtained booklets from myeloma.org from America and they have eased my mind..Thankyou and take care       melanie and carol Thu, 20 Mar 2008 00:00:00 GMT