FYI, one of the best sites for cutting edge information is the Myeloma Beacon at http://www.myelomabeacon.com. It has a great staff, forum and blog aggregator to link you to all myeloma-related blogs. Also, Pat Killingsworth has a great informational blog at http://www.multiplemyelomablog.com. He is a leading myeloma advocate/patient who has written several myeloma related books relevant for all myeloma patients regardless of what country they live in.
Hi Ted, I don't understand what they were telling you about the differences in the figures….beats the heck out of me! It is my understanding that the figures are pretty universal. Try checking out the Binding Site's website for more info. on the freelite test. It is UK-based. Also, one very, very common problem which causes a lot of angst for patients is that some labs report light chains in mg/l and others in mg/dl….obviously, one must be aware of this practice. Good luck. Terry
Great news, Babs! Keep it up. Terry
Hi Alex, glad to hear you are doing well. What type of treatment got your disease under control? As I indicated, just prior to treatment, my kappa light chains exploded to 16,200 mg/l. They are now about 45. Believe it or not, they can approach almost 100,000 in some patients. I also understand that the lambda light chain can be more deleterious to the kidneys than the kappa type, although the latter is bad too. I was advised to drink plenty of water each day and I have my kidney function monitored monthly in the clinical trial. Good luck! Terry
Hi Ted, First, I hope you are able to smolder forever! You appear to have a type of myeloma which is the easiest to track. You have a traditional M-Spike which is what the intact immunoglobulin (paraprotein)is usually termed in the SPEP or serum electropheresis. Your disease level can be tracked this way. Also, your disease may generate light chains which are part of an immunoglobulin. They show up in the blood and can be tracked by the freelite assay. They can also be excreted into the urine and show up in a UPEP or urine electropheresis as Bence Jones proteins. I assume the 928 you quote is mg/l. Some labs use mg/dl. The trend is very important with light chains and my doctor has told me that a significant increase would be 100mg/l after two serial FLC assays. Where did you start out and over what time frame? Do you have CRAB symptoms (i.e. high calcium, high creatinine, anemia or bone involvement)? People like me, oddly enough, don't have M-Spikes like you do. It is harder to track our disease levels and makes the initial diagnosis harder still. Light chains are also very important because they are able to show a response to treatment almost instantaneously, whereas it takes more time for the M-Spike to move. Also, your light chains are not simply a representation of your myeloma tumor burden but also represent the immune system in general. In other words, things other than myeloma can make them rise. This is why serial freelite testing is important in addition to SPEP's, bone marrow biopsies and PET CT's or other imaging tests. Good luck with everything! Terry from New Jersey
Hi Jenna, I have light chain only kappa restricted myeloma which represents about 15% of myeloma patients. Like you, I often search for true light chain only patients who don't have traditional M-spikes. My SPEP's are completely normal but the FLC assays tell another story. Just prior to my starting treatment in May, 2012, my kappa light chains rocketed to 16,200 mg/l. Thankfully, my kidneys were not damaged and my treatments have knocked my FLC's to almost normal (about a 99.5% decline) and my marrow is clean based on a BMB just before Christmas. I live in the US and was admitted to a special clinical trial for newly diagnosed myeloma at our National Institutes of Health near Washington, DC. I received 8 cycles of carfilzomib, Revlimid and dexamethasone. I am now on low dose Revlimid for 2 years. There are a few light chain only patients in the trial. One point of the trial is to see if the protocol can top the standard induction with SCT regimen which is usually the route for younger patients. So far, so good but only time will tell. Hope to hear from you. Regards. Terry
Hi Sarah, I was diagnosed with smoldering myeloma last August at age 49. Unfortunately, I progressed to active myeloma this April after a pulmonary embolism and a plummeting hemoglobin. I am currently being treated at the US National Institutes of Health near Washinton, DC in a special clinical trial utilizing carfilzomib. I was lucky to get a slot in it and it has chopped down my disease over 99% in four months. My doctor, Carl Ola Landgren, has written extensively about smoldering myeloma and one's risk of progression based on several factors. Just google his name, etc. for his research. The Myeloma Beacon site also has a lot of useful info. about this. These risk factors include: your level of plasma cell infiltration (over 60% infiltration leads to quicker progression); immuneparesis; abnormal free light chain numbers and ratio and greater than 99% abnormal plasma cells determined by flow cytometry. Your doctor should be able to provide you with each of these risk factors. I wish you the best of luck and I hope you smolder foreever. Terry L. from New Jersey
Hi Keith, the regulatory process does seem to be frustrating. I wasn't aware that the trials had to repeated in Europe. I certainly understand the safety concerns but there are sick patients who could immediately benefit from this drug and others in the pipeline. Carfilzomib/Kyprolis (what a mouthful) may not be a silver bullet but it gives us another potent weapon. Cheers. Terry
Hi Amelie, if the person is specifically treated at the US NIH (Bethesda, Maryland) in a clinical trial, there is no cost for the treatment. Obviously, there would be costs associated with accommodation, travel, etc. As far as private hospitals here, I have no idea if or how your NHS, etc. will reimburse for cutting-edge treatments like are done at the myeloma clinic in Arkansas, Mayo, Dana Farber, etc. Good luck! Terry
Hi Amelie, during the course of my treatment at the National Institutes of Health (NIH), which is an amazing research facility (looks like something one sees in the movies), I have met patients from not only the US, but also Canada, Australia, Europe, etc. So, I assume there are no restrictions for care based on nationality, etc. There is no cost for treatment at the NIH if you are accepted into a trial. The myeloma section of the NIH is excellent and they have several cutting-edge clinical trials and will have more shortly. As far as the EU is concerned, my doctor at the NIH, who is originally from Sweden, when discussing research with me, indicated that Spain is quite advanced with regards to myeloma research and treatment. Spain is home to Jesus San Miguel and Joan Blade, two of the world's leading myeloma experts.
Hi Dai, you and I have communicated before about carfilzomib. I am an American and live in New Jersey. I am registered both with the Myeloma Beacon and Myeloma UK. I like both sites and their active communities. The Myeloma Beacon also has the added benefit of myeloma specialists who will respond to your questions in detailed fashion. The columns are also excellent. There is also an amazing resource which is the ACOR myeloma listserv which has close to 2,000 registered persons. It is second to none and is truly international.
As far as carfilzomib is concerned, I entered a clinical trial utilizing carfilzomib, revlimid and dexamethasone the first week of May, 2012, after my smoldering myeloma went active quickly. This trial is for newly diagnosed patients with no prior treatment. It is at the NIH (National Institutes of Health) near Washington, DC. So far, it has dramatically chopped down my disease and almost normalized my blood counts. In only two cycles, my paraproteins decreased 97%. For me, carfilzomib has been like a miracle. I have had a few bumps in the road and I am sure more will come, but I am focused on just feeling well today. Knock on wood….hope it lasts. I truly hope carfilzomib becomes available soon in the UK and elsewhere. When it comes to this condition, there should be no borders or bureaucratic obstacles. Cheers. Terry
Hi Dai, thanks for the feedback and I wish you the best of luck with your course of treatment. In my trial, all patients will be getting the carfilzomib, etc., as it is a single arm trial. It is very similar to the trial which is ongoing at the University of Michigan by Dr. Jakubowiak who presented his very positive findings earlier this year. He remarked that this protocol may change the landscape insofar as current myeloma treatment is concerned. Knock on wood…. There is a lot of talk here about pomalidomide as well as being a game changer. In fact, there are several clinical trials combining carfilzomib and pomalidomide. Curious what those results will be. Hopefully, all of these new agents will be approved soon and get to all of us fast. Good luck! Terry
Hi Fadia, it is great to hear from you! I am happy to hear that your hemoglobin is now into the 12's—normal range. Hopefully, you will be able to get your second opinion soon. Why does it take so long to see a specialist? Is it just bureaucracy or is he/she just booked up? As for me, I am still in the "watch and wait" protocol. I did have some shoulder pain last month. My myeloma specialist ordered an x ray and, thankfully, no lytic lesions or anything related to myeloma were found. Please keep me posted about your situation. Best wishes and a giant hug from New Jersey!
Terry
Hi Fadia, that is great news. A second opinion, apart from an emergency situation (i.e. kidney failure, etc.) should be obligatory with myeloma, especially because there all numerous approaches and philosophies regarding treatment. In my case, I am separately monitored by two myeloma experts. I am in a special study of myeloma as a volunteer at the US's National Institues of Health near Washington, DC where the experts are trying to figure out how to halt progression permanently i.e. stop the myeloma stem cells from doing their nasty deeds every so often. I am tested regularly and I donate extra bone marrow aspirate, etc. for research. There are a few hundred of us in the study and I hope it bears fruit for all of us someday. I also am a regular reader of Margaret's Corner smoldering myeloma blog. Check it out. She is a very humorous American woman who lives in Italy and has many natural ideas on how to deal with smoldering myeloma. She is a big proponent of curcumin, etc. One of my myeloma experts believes curcumin could work and the other thinks little of it. Who knows? Fadia, I am glad you contacted me as I have been wondering how you have been. Well, off to celebrate St. Paddy's Day—my grandparents were Irish immigrants to the States! Big hugs and cheers from Haddonfield, New Jersey. Terry.
Hi Fadia, I hope all goes well for you with your current doctor and he is able to answer your questions and address your concerns. I also hope that they grant you a second opinion for your own peace of mind. I would imagine the wonderful people on this site, or the nurse line, could recommend a top notch myeloma expert in your area of the UK if you go the route of a private consultation. Make sure you get a complete copy of your cumulative medical records for that purpose. Big hug. Terry
