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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi Fadia, that is great news. If it helps, go with a trusted friend or family member, who can also chime in if you forget to ask something. Also, write down any questions before hand lest you get flustered, etc. I wish you the best of luck and keep us posted. A big hug. Terry

Hi Fadia, I again would urge you to seek an evaluation ASAP with a myeloma expert and to also discuss all of these issues, i.e. CRAB criteria with your present hematologist. I am an attorney (in the US, a combination solicitor/barrister) and I always urge my clients to seek a second opinion if they have a reasonable doubt about my guidance, etc.…[Read more]

Hi Helen, you make a lot of good points. However, I respectfully believe Fadia should get a second opinion from an actual myeloma expert. I wasn't aware that there were any real differences between the US and UK medical systems. What was your point? The myeloma treatments here are excellent and there are numerous cutting edge clinical trials…[Read more]

Hi Fadia and Mavis, Mavis, I agree totally with your advice to Fadia. Fadia, the CRAB criteria are pretty fundamental. If you have normal calcium levels, normal renal function, only mild anemia (in your case, at 10.9 as a female, I believe it is mild) and no bone involvement, the presumption, at least according to my two separate myeloma experts,…[Read more]