Latest Multiple Myeloma discussions http://www.cancercompass.com/message-board/cancers/multiple-myeloma/1,0,119,24.htm Thu, 15 May 2008 00:00:00 GMT Thu, 15 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Not sure I'm signing in the right place -- maybe someone can redirect me if possible.I was diagnosed in 2000 with MGUS.  I see other people have lengthy additions to that, i. e., IGA with something or to something or whatever, so I probably have not asked enough information to be clear where I stand.  Long story short.  I see a hematologist/oncologist every six months and have bloodwork and a full skeletal survey (X-ray) done.  Up until 6 months ago my protein count stayed at 1.2 (whatever), then it went to 1.3 and today I am at 1.6.  My doctor says not to be concerned until it gets to 2.0.  It was mentioned today that my SED was up as well.  Naturally what alarms me is that it stayed the same for 7 and 1/2 years and in six months its gone up a total of .4 bringing me closer to that 2.  My fear, of course, is what if it continues at this renewed rate?  I was alarmed when I was first diagnosed, but eventually after there was no significant increase I became less concerned (except at the 6 mos. check-ups).  I was getting real comfortable that I just might escape this MGUS developing into anything serious before I turn 100 or expire from any number of unexpected sources.  After 18 years of being a single mom (no financial or emotional assist from my ex) I had finally seen my children through college and married, and then had the unbelieveable good fortune to meet and marry my husband (worth the wait!!) and in the past 5 years welcomed three beautiful grandchildren, now this!Anyway, I'm going to try and not get over-exercised about it; I too was told early on not to worry that it may be a long time before the MGUS developed into anything truly negative -- if ever.  However, since  the count has moved substantially in the past six months I am a little shaky again.  Can anyone out there explain in laymans terms what is going on and what to ask about?  I don't mind going about with the MGUS diagnosis as long as that's what it stays. . . .  http://www.cancercompass.com/message-board/message/all,24070,0.htm Nanette7 Thu, 15 May 2008 00:00:00 GMT I feel kind of hesitant to post this when I see so many of you who are in full battle with this illness but its kind of driving me nuts with anxiety and I can't get in to see the oncologist for several weeks.A little over a month ago i had a hypertensive stroke which fortunately did no apparent damage.  In the blood tests they found the IGA level elevated.I am told it is at 1.7 which I understand means it is MGUS.  The oncologist ordered a bone survey which came back clean.Today I saw bloodwork that showed the IGM level as slightly low (37) but my primary care doc did not want to guess about it since he believes it out of his expertise.Finally my ESR was somewhat elevated which he claims means there is some kind of process going on but that it is very non-specific.This is very frightening to me as I lost my dad to MM and I have a pretty good idea what it can be like.  I understand that its supposedly not hereditary.Can anyone shed any light on this for me?  http://www.cancercompass.com/message-board/message/all,23999,0.htm JoeStiger Tue, 13 May 2008 00:00:00 GMT Memorial Sloan-Kettering investigators are also studying sorafenib (Nexavar®) for use in multiple myeloma patients with abnormal kidney function. An oral multiple kinase inhibitor that affects tumor growth and angiogenesis (blood vessel formation), sorafenib stops cancer cells from producing a signal that is necessary for their multiplication, according to research findings. This came from the Sloan Kettering site and I'm interested because of my recent kidney problems.  I'd like to talk to anyone who has been using Nexavar about their experiences with this drug.  Any help gratefully appreciated.  Many thanks, Cath http://www.cancercompass.com/message-board/message/all,23943,0.htm poppy/cath Mon, 12 May 2008 00:00:00 GMT Hi All --I've been doing a fair bit of reading about Fucoidan lately and was wondering if there is anyone on this board who is using it?  How does one determine how much is needed?  Are there any contraindications?  Looks like there is a company in Tasmania making it -- have you heard of them??  All info welcomed!!  Many thanks, Cath http://www.cancercompass.com/message-board/message/all,23942,0.htm poppy/cath Mon, 12 May 2008 00:00:00 GMT My mom was diagnosed with MM just a few weeks ago.  I have five siblings, and each of us seems to be getting different information from doctors at her hospital in Minnesota.  We're all over the USA, so it's been difficult to coordinate the facts.  One of my brothers heard a doctor tell him that of all the cancers, MM is the most merciful because as it progresses her pain will lessen - something about the body creating a kind of self-perpetuating morphine effect.  This sounded a little weird to me, but I have no medical training myself.  I was thankful for the news.  Well, this is not what we're seeing with our mother AT ALL.  She seems to be in terrible pain ALL THE TIME.  Has anybody else out there ever heard any doctors say what my brother heard?  (about the pain lessening as the disease progresses)????  http://www.cancercompass.com/message-board/message/all,23877,0.htm NewGuineaChild Fri, 09 May 2008 00:00:00 GMT Hi all. Was wondering if anyone could help me a bit with translating CBC lab reports and answer a question about MM - IGA. My father has Multiple Myeloma, IGA. Stage III with bone involvement, currently under treatment for 6 months now, and the cancer still stable/responding to the treatments. Regarding IGA, the normal range is anywhere from 70 to 400. When he walked in the door upon diagnosis in Nov. 2007, he was 3400!After he started treatments, it declined to the following:December - 410 (a giant improvement)Jan/February - 119March - 105April/May - 118My first question is, should there be any concern that the IGA has gone up a little (13 points) since last month?  I was hoping to see it 'decrease' even more... like under a 100, but no such luck. They seem to think he's doing well and said he's continuing to 'maintain' -- but i have never heard the word 'remission' - like some people on this board have. Would that mean that one's IGA would have to go -under- 70 to do so? Currently, he is just starting his 4th cycle of Velcade. (initially, he got it twice a week, but it was a little too much for him - so now he gets it once a week). Also, as far as reading his lab/blood work - i am kind of clueless compared to everyone on this board. This is his latest, which i'm wondering if anyone could help 'translate' or just tell me what the important things are that i should keep track of:ALBUMIN (SPEP) 3.35ALPHA-1-GLOB (SPEP) 0.23ALPHA-2-GLOB (SPEP) 1.06BETA GLOB (SPEP) 0.84GAMMA GLOB. (SPEP) 0.72M SPIKE  - is 'blank'... then says 0.06 HI  - NOT DETECTEDIGA, SERUM 118IGG, SERUM  is 'blank'... then says 561 LOIGM, SERUM 100With notes at bottom.... Serum protein electrophoreses pattern interpretation: *** weak band in the gamma region which may be a paraprotein peak***And also - IMMUNOFIXATION, SERUM - Faint IGG Lambda Paraprotein Peak Detected.On page 2 - chemistry.... the following:Total Protein 6.2,  Albumin 4.1, Globulin 2.1, Sodium 136, Potassium 4.1, Chloride 97, BUN 15, Creatinine 0.7, BUN/Creat Ratio 21.4, Calcium 8.9, Bilirubin, Total 1.1 (says HI), Alk Phos 87, AST (SGOT) 20, ALT (SGPT) 13. Any help or slight translations would be very much appreciated. Thank you! http://www.cancercompass.com/message-board/message/all,23858,0.htm DebJr Thu, 08 May 2008 00:00:00 GMT I will be undergoing autologous stem cell transplant and chemo therpy within the next thirty days at Audie Murphy V.A. in San Antone. I live alone and am self-employed with only my son and one good friend who have volunteered to help me during this process. I get mixed answers from the staff at the V.A. Hospital in Dallas as to how long someone will be required to stay with me while undergoing treatment. Also, can someone tell me how long I wil be nauseated following chemo and how long of a stay can I expect before being released to go home and return to normal activity? Thank You  http://www.cancercompass.com/message-board/message/all,23808,0.htm harleynightrider Tue, 06 May 2008 00:00:00 GMT Hello Everyone,I was wondering if anyone is taking Revlimid/Dex for maintenance following stem cell transplant. My husband is on it and he is feeling really bad. He has these shivers, I would actually call them seizure like. They only last for a few seconds and it involves his back and extremities, he looses his balance, walks into door frames, gets a "heavy foot" where the foot on his right side actually loses some tone. I don't know if this is revlimid related or maybe myeloma. Any ideas?Thanks,  Carolynn http://www.cancercompass.com/message-board/message/all,23682,0.htm yosh003 Fri, 02 May 2008 00:00:00 GMT This is for Jan (webeenthere) My husband had plasmacytoma and went into multple myeloma inMarch of 08,  We just finished the revlimid, 28 days with dex once aweek, 20mg.  So far only an extreme hyper personality and can't sleepand seem to come down to earth.  Except this week, he is only takingthe 20mg.dex.  Can you tell me how old your husband is?  My is 77 yrs.and doing fairly well.  He is being treated by a hematologist at the MayoClinic.  Where are you being treated?  If you don't mind telling more about your experiences, that would be great.Thank you,ozy (a newbee to this disease)  http://www.cancercompass.com/message-board/message/all,23643,0.htm ozy31 Thu, 01 May 2008 00:00:00 GMT From Anna, Hi all, Today is Dad's 65th birthday. Ten years ago didn't think he would reach this birthday. Your friend,Anna  http://www.cancercompass.com/message-board/message/all,23633,0.htm Anna9563 Thu, 01 May 2008 00:00:00 GMT I am sure you have all read his "Living Proof" but what do you think about it? I have to say, his way is extremely close to my heart and I shall advocate his case before my mother. Ok, she's had chemo, but I don't think she will have anymore, as it seems to be getting her faster than myeloma itself. What do you think about the book? http://www.cancercompass.com/message-board/message/all,23610,0.htm YanaMom Thu, 01 May 2008 00:00:00 GMT http://www.oncologystat.com/journals/journal_scans/High-dose can it be done after revlimid-dex-dox? http://www.cancercompass.com/message-board/message/all,23607,0.htm YanaMom Thu, 01 May 2008 00:00:00 GMT I am new to this web site but have found it very helpful.  My wonderful husband was diagnosed with multiple myeloma (Stage 3) in January 08.   He is taking Revlimid three times a week and has seen some improvements in Protein counts.  I am told this is very good.  He has had lots of side effects such as blood clots in his legs and lungs.  He is now on Lovenox which seems to be working as expected.  The other problem he has is loss of blood.  I haven't read about this problem from any of you.  I am curious if this is common.  He has had to have many transfusions.  He had 2 pints on March 17th and had to have another 2 pints on April 7th.  However, prior to this time he went 6 weeks and needed 1 pint.  This worries me.......can anyone give me some insite about this?   He also had the rash over his entire body except for his head.  After a month the rash has dissapeared.  Thanks for your concern.     Gambler 1   http://www.cancercompass.com/message-board/message/all,23469,0.htm GAMBLER1 Sun, 27 Apr 2008 00:00:00 GMT I am a 39 year old woman, who had a bone marrow/blood stem cell transplant back in 2002. I am now in complete relapse, have no insurance to cover another transplant, and have chosen to cash in my 401k and go overseas to receive whole body hyperthermia.While I have read good things about it - I was hoping that someone has first hand experience they can share with me.Anyone with experience with this - good or bad, please let me know. My flight takes off May 13, and I am (understandably) having cold feet.Thanks,Marni http://www.cancercompass.com/message-board/message/all,23353,0.htm Marni Wed, 23 Apr 2008 00:00:00 GMT NEW YORK (Reuters Health) - For the first time, researchers have evidence of an association between renal cell carcinoma and multiple myeloma, a type of blood cancer, one that "cannot be explained by random incidence alone," they say. "I think general oncologists as well as myeloma and renal cancer physicians should be aware of this association," Dr. Mohamad A. Hussein of the H. Lee Moffitt Cancer and Research Institute in Tampa, Florida, noted in comments to Reuters Health. Renal cell carcinoma begins in the kidney cells and although it may progress slowly, it is very resistance to chemotherapy. Multiple myeloma, which may also progress slowly, is likewise resistant to treatment. It begins in the blood's plasma cells, a type of white blood cell that is part of the immune system. Over time, myeloma cells build up in bone marrow and then in the solid parts of bone. In a review of data from patients referred to the Cleveland Clinic between 1990 and 2005, Hussein and colleagues identified 1,100 patients with multiple myeloma, 2,704 with renal cell carcinoma, and 8 with both types of cancer. In 4 of the 8 patients, renal cell carcinoma was diagnosed 3 to 46 months after the multiple myeloma diagnosis. In the remaining 4, renal cell carcinoma was diagnosed 1 to 108 months before the multiple myeloma. Seven of the 8 patients were first diagnosed with renal cell carcinoma on the right side. "The probability of this association was much higher than that expected in the general population," the researchers note in the medical journal BJU International. "No clear treatment-related, environmental, genetic or immune-mediated common factors can fully explain this association." The investigators point out that interleukin-6 supports the growth and expansion of both types of cancer. Interleukin-6 is a "cytokine" that normally enhances the body's immune response to disease and infection. "I think the take-home message," Hussein said, "is that after active therapy for myeloma, if the kidney lesion does not clear -- especially if it is affecting the right kidney -- renal cell cancer should be considered." -----Craig  http://www.cancercompass.com/message-board/message/all,23329,0.htm photog Wed, 23 Apr 2008 00:00:00 GMT Not sure if this is in the correct place but here goes. I have multiple myeloma and collecting SSD and group disability insurance. I need to know if my myeloma becomes stable (as it has before but returned) will the insurance company stop my payments? Has anyone collected disability ins and their cancer gone into remission? http://www.cancercompass.com/message-board/message/all,23304,0.htm tech58 Tue, 22 Apr 2008 00:00:00 GMT My mother has been on Revlimid and Dex.for a month, She developed a horrible rash on her face. (like acne) The doctor took her off dex and revlimid until it cleared up.  She is going to be taking revlimid next week. Has anyone else had this reaction? While taking dex by itself she did have a mild case of acne.  She is 78 years old.  She has been taking dex for 16 months and a bone builder. Now the doctor has added revlimid to her regiment. http://www.cancercompass.com/message-board/message/all,23282,0.htm beinva Mon, 21 Apr 2008 00:00:00 GMT I have been on Revlimid for over 20 months now with fantastic results, however I recently developed three kidney stones which had to be 'blasted' to remove them.  Last week the 'stent' which had been placed in my kidney was removed and the doctor found quite a quantity of 'sand' in the kidney.  This doctor is not an oncologist, but he feels that the reason that I am making the 'sand' is because I'm taking Revlimid.  My question is this:  has anyone else had any kidney problems when taking Revlimid?  I am not prepared to stop Revlimid treatment, and have added a gout medication into the mix to try and stop the sand production.  Any other suggestions gratefully appreciated.  Many thanks, Cath http://www.cancercompass.com/message-board/message/all,23260,0.htm poppy/cath Mon, 21 Apr 2008 00:00:00 GMT My brother who has been DX in november with stage 3 MM with chromosome issues..IGg kappa and  beta 2 microglobulin level of 13.2 ..things were moving SO fast and information was coming at a rate far too fast to comprehend. He was 100 % cellularity and with not too much hope from the doctors.. He was given 200 mg velcade and Deximethasone after 6 sessions the cancer was reduced to under 3% then in march he underwent "high dose" and stemcell transplant.yes he has lost most of his hair and is a bit fatigued but overall he is doing well.his biggest complaint is neuropathy as his feet are almost unbearable (tingling,burning,and numbness) I have been with him every day for the past 6 months and have watched a strapping 50 year old go through the treatment. This whole thing is just like a war...the cancer advances..we attack..the body weakens...the cancer waits regroups and wages another advance,we (the doctors) launch another attack and the body weakens some more. The stem cell transplant is like full scale thermoneuclear war which damages your realestate as much as it destroys the enemy.Somewhat like  mutually assured destruction.The problem is you can only do battle over the same real estate so many times.So at this time we are waiting to see what the enemy will do.(remission) We are in the war room looking over our future options we have revlimid.steroids thalidomide,velcade and a battery of other resources including the nukes.I asked the doctors at Yale ..."why dont we attack when the cancer is in remission if it is beaten down why cant we bring it to surrender" and he said"the cancer is like the vietnam war as the cancer hides in small numbers underground and when you think it is beat It rears up again" In NAM we used "moles" to go into the hideouts to remove the enemy but in medicine we do not have this ability. so for the time being we are in a wait,watch and see pattern...the only difference now is we understand the enemy a little bit more and are more prepared for the future.Good luck to all who have to wage this war. http://www.cancercompass.com/message-board/message/all,23232,0.htm zazu1234 Sun, 20 Apr 2008 00:00:00 GMT Can you have both?  My mom was diagnosed with an isolated plasmactyoma with all tests being negative (skeletal profile, MRI, bloodwork, etc.) but then got a call she has to give another urine b/c they didn't do the right one (I'm assuming the lab messed it up) and I noticed it had on the script monoclonal gammopathy/lambda light chain.  I don't know if that means they're ruling that out or if they just have to keep checking her urine weekly b/c she's getting radiation and they want to see if these proteins become undetectable or decreased with the radiation.  I'm so confused and unfortunately this all took place Fri. evening so I couldn't call.  I guess I'm wondering if people with a plasmacytoma have these proteins show up in the urine and they're supossed to go away or decrease with radiation?  I had read something about that but I'm just not certain.  http://www.cancercompass.com/message-board/message/all,23227,0.htm risper Sun, 20 Apr 2008 00:00:00 GMT can anyone give me information on symptoms  regarding  ed stage of MM http://www.cancercompass.com/message-board/message/all,23120,0.htm ehallenb Wed, 16 Apr 2008 00:00:00 GMT Hello everyone!I'm so thankful for this site where I can really learn a lot from all of you nice people. I was diagnosed with MGUS kappa in November 2007. I had many, many symptoms for a couple of months before the diagnosis like: horrible and frequent headaches, severe tiredness, skin issues, strange infections (like oral aphtosis), series of day and especially severe nigh sweats, lose of voice, memory, concentration and overall physical ability...Bone marrow biopsy made in November '07 showed "10 or some more" percent of MM cells involved.Since then 'till this day my blood test were stable and as follow: - low (but still within normal range) white blood cells - monoclonal IgG kappa 2,2g/l  - everything else tested normal, including x-ray and MRI examinations Since I've been diagnosed I completely changed my diet and started taking supplements advised mostly from the MM-forums and "Margaret's corner", I diminished stress (a lot), returned to some old nice habits like long walks in the nature, cycling and reading and also started some new activities like tai-chi.And this is the first topic I write to some forum... I do have many questions, but I'd like to start with the following two since they are present at the moment:1. Could the superficial, very sharp pain when touched, on the upper margin of a pelvic bone be the symptom of MGUS/MM?This superficial pelvic bone pain comes and goes in time. Sometimes I feel it at some move or while walking, sitting, but mostly it REALLY hurts by touching the tender spot. The most painful is actually just one little, a square cm big spot.As I read in some introduction MM cells collect in the bone marrow as well as at "the top" of the bone. So I wonder: if they collect at the upper margin of the bone, just underneath the very well nerve supplied periosteum, can they then cause irritation and thus the pain? 2. I experience quite frequently loss of the voice. It means that suddenly I can really hardly speak. It feels like "having something in my throat" and just can't get rid of it. Last few days it even affects the swallowing. And I still haven't got the answer from the docs. First I thought it was because of the reflux from the stomach, but it was all normal in the gastroscopy. Any ideas? I will be very pleased to get some answer or a tip. Thanks!Best wishes to all of you! Robert, Slovenia  http://www.cancercompass.com/message-board/message/all,23093,0.htm robertos Tue, 15 Apr 2008 00:00:00 GMT I have not had time to fully review the text or video, but it was a story recently covered by CBS's 60 Minutes, so must have some degree of credibility. http://starturl.com/vwcvv Craig  http://www.cancercompass.com/message-board/message/all,23083,0.htm photog Tue, 15 Apr 2008 00:00:00 GMT Hello, I have not posted any message for a while, but are always learning from all of you. I have found this site very useful. I have some questions about some past tests . I am the one that has IgG Lambda mgus and ACQUIRED von willebrand.  I still have had many symptoms which maybe one of you could help explain. My bone survey showed osteopenia and tiny lytic lesion in the back of my skull. Does the osteopenia give you bone pain? Also, I am always getting day and night sweats, had been bad the last couple of days, but have had them off and one since the diagnoses. Also, my blood work was stable except for elevated alpha-1 and elevated alkaline phosphate. Borderline hypercalciumia. But did not run the proper blood test to check my IgG levels, just checked the m-spike. Thank you for any info you can give me http://www.cancercompass.com/message-board/message/all,23047,0.htm Majolica Mon, 14 Apr 2008 00:00:00 GMT Hi all, Short update. Dad will be doing a 4th round of chemo. His protein count is down a little but not enough.   Your friend, Anna http://www.cancercompass.com/message-board/message/all,23043,0.htm Anna9563 Mon, 14 Apr 2008 00:00:00 GMT