CancerCompass message board discussion started by robertos on 4/15/2008 http://www.cancercompass.com/message-board/message/all,23093,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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  robertos Tue, 15 Apr 2008 00:00:00 GMT Hello, I can't answer any of your questions, but I also have many of the same symptoms that you describe.  I also have mgus,IgG lambda type.  Was diagnosed 2 years ago, along with a rare blood disorder called acquired von willebrand disease.  Its extremely rare to acquire it, always inherited.  I would also love to know why we have these symptoms if we are so stable.  Wish you luck on finding more of your answers also.   Majolica Wed, 16 Apr 2008 00:00:00 GMT Thank you for your reply Majolica.  Do you also experience similar superficial bone pain occasionally? I just received my latest blood test results. M-spike is still 6%, but IgG kappa raised up from 2,27 g/l to 2,51 g/l in a month. That's more than 10% increase! Not good. Does it mean that I'm not stable anymore? Any tip?Robert, Slovenia robertos Wed, 16 Apr 2008 00:00:00 GMT Robert, I sure do have bone pain. I have a lot of upper arm pain. Not sure about your increase in your blood work because the doctors here keep forgetting to do that part of my blood work. I  have been very frustrated with them because they charged me for the blood work but did not do it. I never seem to get any where with my doctor. Have they told you about the increase in your blood work and what it could mean. I even asked the doctor what is most important in checking mgus progression and he said the IgG level, yet they never do the blood work for it. Maybe someone here can help you explain what your increase could mean. Do you continue to feel worse? How was your bone survey and do you receive any treatments?  Thanks Majolica Thu, 17 Apr 2008 00:00:00 GMT I haven't visited my hematologist after last blood test, yet Majolica. And I agree with you that sometimes we (patients) just have to push things a little to get move. I did these last tests on my call, otherwise it would only be in a month time from now and definitely not all the tests I think are important to check the disease (serum-protein electrophoresis for example).The first time a friend of mine that works in a laboratory found a monoclonal paraprotein in my serum was more than a year ago. She suggested me to visit a hematologist, which I immediately did. But the doctor wasn't really paying much attention on it. He ordered some other blood tests for viruses and sent me off to the epidemiologist. They found nothing special there, of course and sent me off, too. AND NOBODY TOLD ME TO GET BACK FOR A CONTROL AT ALL! And of course nobody told me what does it mean to have a monoclonal paraprotein in your blood! I had no clue about it and kept on living my regular (mostly very hectic and stressful) life. But only for a few months. And then the real problems started... I plan to visit my new hematologist soon. I got back my urine test results today - no Bence-Jones protein, all normal, thank God!Good luck to you Majolica and to everyone!Robert robertos Thu, 17 Apr 2008 00:00:00 GMT Sorry Majolica - I didn't answer your question. At the moment I'm only being checked and receive no treatment from the official medical care. But I do take some homeopathic drops and I'm also having an immunotherapy at some private clinic in Austria. They make a biogenic cure by patient's own blood "reinforced" in the lab and put back into a bloodstream in order to boost the immune system. I'm having this therapy for two months now. It is very expensive and so far I've experienced no benefits. I feel quite bad, actually worse then before the treatment, which is normal I was told (also by my hematologist). But now that my blood tests have worsened I really don't know what to think anymore. I just know that I will have some very serious discussion with the doctor. He told me I'd definitely feel better after the treatment and that I'd stay stable and well. And I payed A LOT of money for that...Robert robertos Thu, 17 Apr 2008 00:00:00 GMT Hi Robert, you have to many questions with no answers.   I think you really should find a myeloma specialist and get a second opinion.   You're having to much pain  and should not stay  with not knowing whats going on.  Good luck  Marion  gemini Fri, 25 Apr 2008 00:00:00 GMT Hi,I don't mean to interfere in your conversation, but I would like to say a couple of things. First: because the mgus is the body working too much to fight infection/disease, it is not uncommon to have an autoimmune disorder along with the mgus. I have at least two autoimmune disorders. They can cause bone pain. For instance, fibromyalgia pain can feel like the bones are sunburned and also they can cause severe pain in little spots, or small areas.I don't want to try to diagnose anyone. My oncologist tells me to watch out for severe pain when walking. And the levels of the markers in the blood is what is important. Most mgus doesn't turn malignant, but it is a 'blood tumor' and as such has it's own problems. The blood thickens and can cause bleeding in the eyes and other mucus membranes.I have had this mgus at least five years, perhaps more as I couldn't get anyone to tell me what was wrong. It was causing nerve problems and this also leads to pain.I don't know that I have helped anyone, hopefully I have not 'hurt' with my information. It is good to ask a lot of questions when you see your oncologist. They are the only ones who know you and what you should expect. Momster Thu, 08 May 2008 00:00:00 GMT Hello, I want to thank you for the info.  I continue the have bone pain and even numbness in my back and thighs.  I have neuropathy in my left leg had now having kidney/bladder infections.  I have night sweats.  Does anyone elses body swell up.  My abdomen, legs swell up.  I all ready have bleeding problems , I acquired a inhibitor.  I feel like my bone have small fractures in them. The family doctor says to go back to hemo doctor and hemo doctor says to see family doctor. No one doing proper blood tests and no follow up xrays. Just the cbc is done and metabolic. Thanks again  Majolica Mon, 12 May 2008 00:00:00 GMT  On 4/16/2008 Majolica wrote:Hello, I can't answer any of your questions, but I also have many of the same symptoms that you describe.  I also have mgus,IgG lambda type.  Was diagnosed 2 years ago, along with a rare blood disorder called acquired von willebrand disease.  Its extremely rare to acquire it, always inherited.  I would also love to know why we have these symptoms if we are so stable.  Wish you luck on finding more of your answers also.     MaiMaiE Thu, 05 Jun 2008 00:00:00 GMT  On 4/16/2008 Majolica wrote:Hello, I can't answer any of your questions, but I also have many of the same symptoms that you describe.  I also have mgus,IgG lambda type.  Was diagnosed 2 years ago, along with a rare blood disorder called acquired von willebrand disease.  Its extremely rare to acquire it, always inherited.  I would also love to know why we have these symptoms if we are so stable.  Wish you luck on finding more of your answers also.   Sorry I am new and tried to post earlier and only posted your message and not mine.  Here goes... I was suprised to see someone else that has acquired VWD!  I am just doing research on plasmacytoma and came across your post. I have been seeing my hematologist for almost 6 years and he has said from the beginning that I have something wrong with my B cells. I have been told maybe Hairy Cell Leukemia, Lymphoma or giant B-cell something, but have never received a real diagnosis and treatment except for hypogammaglobulinemia for which  receive monthly IVIG treatments. I have had an undiagnosed platelet disorder for years and didn't learn I had the bleeding problem until I had heart valve repair surgery last year. Getting platelets doesn't help me, so I must have Humate P before and after any surgery. My doc told me this week that my symptoms make him think Plasmacytoma, but he hasn't found it in my blood yet. I had a muscle biopsy looking for vasculitis, but it came back with nonspecific muscle atrophy.  I had a skeletal survey yesterday and am hoping to get results tomorrow. My docs are very concerned about my weight loss, and they say I have cachexia. I have slow digestion, neurological problems, pain in my backbone/ribs and muscle and joint pain and FATIGUE.  I had a BMB in 2003 and again in 2007.  I am 45 and married to the love of my life for 26 years and our kids are out of the house!! I have so much I want to do.  My docs suggested sending me to a University hospital, but I just cringe at the thought of doing all those tests again and explaining everything to new docs. I guess I need to find out what the whole process will be like. I am happy to have found a place where others understand what I am dealing with. Thank you. MaiMaiE Thu, 05 Jun 2008 00:00:00 GMT  On 6/5/2008 MaiMaiE wrote: On 4/16/2008 Majolica wrote:Hello, I can't answer any of your questions, but I also have many of the same symptoms that you describe.  I also have mgus,IgG lambda type.  Was diagnosed 2 years ago, along with a rare blood disorder called acquired von willebrand disease.  Its extremely rare to acquire it, always inherited.  I would also love to know why we have these symptoms if we are so stable.  Wish you luck on finding more of your answers also.   Sorry I am new and tried to post earlier and only posted your message and not mine.  Here goes... I was suprised to see someone else that has acquired VWD!  I am just doing research on plasmacytoma and came across your post. I have been seeing my hematologist for almost 6 years and he has said from the beginning that I have something wrong with my B cells. I have been told maybe Hairy Cell Leukemia, Lymphoma or giant B-cell something, but have never received a real diagnosis and treatment except for hypogammaglobulinemia for which  receive monthly IVIG treatments. I have had an undiagnosed platelet disorder for years and didn't learn I had the bleeding problem until I had heart valve repair surgery last year. Getting platelets doesn't help me, so I must have Humate P before and after any surgery. My doc told me this week that my symptoms make him think Plasmacytoma, but he hasn't found it in my blood yet. I had a muscle biopsy looking for vasculitis, but it came back with nonspecific muscle atrophy.  I had a skeletal survey yesterday and am hoping to get results tomorrow. My docs are very concerned about my weight loss, and they say I have cachexia. I have slow digestion, neurological problems, pain in my backbone/ribs and muscle and joint pain and FATIGUE.  I had a BMB in 2003 and again in 2007.  I am 45 and married to the love of my life for 26 years and our kids are out of the house!! I have so much I want to do.  My docs suggested sending me to a University hospital, but I just cringe at the thought of doing all those tests again and explaining everything to new docs. I guess I need to find out what the whole process will be like. I am happy to have found a place where others understand what I am dealing with. Thank you.Hello, I just saw your message today.  Boy, I finally found someone that can relate to me and the symptoms i have been going through.  I have had the most frustrating 2 years of my life.  No thanks to doctors not doing there job properly.  I was diagnosed with the acquired von willebrand and mgus 2 years ago when I started feeling ill. I also have had IVIG prior to a surgery I had a year ago. The IVIG just about killed me. I have a very severe form of the von willebrand. Barley measurable. I could tell you all the mishaps that I been through, no one could believe it. I lucky I am not dead from all the mishaps. Bone marrow biopsys done without ivig, bleed bad for 2 days straight, doctor doing surgery forgot what patient he was working on, only completed part of the surgery after 5 days($30,000) of treatments, which I was having a reaction to. Doctor not reading charts, etc........Well, Here I am now, feeling ill still not having the proper blood tests run. I have been completely disappointed in the medical field and have been tramatized to the affect of never seeing a doctor for a very very long time.  I don't mean to offend the good doctors out there, but It has just been a nightmare. I hope you get better results with your doctors and wish you all well. Love to hear more about your condition . Thanks again for the message   Majolica Tue, 10 Jun 2008 00:00:00 GMT