https://forum.myeloma.org.uk/members/terryl1/activity/ Activity feed for TerenceLytle. Fri, 24 Apr 2026 09:14:17 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 08d0939819d9f50716ddaf593cb32f6c http://www.myeloma.org.uk/forums/topic/myeloma-blogs#post-86981 Sat, 09 Feb 2013 13:09:18 +0000 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]

]]> 976aa0d400f816f3961bff3f4033b3e2 http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87227 Wed, 30 Jan 2013 23:12:37 +0000 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]

]]> 9d6d4434aadb4fdf3d8a23e814cf2ab7 http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87225 Wed, 30 Jan 2013 17:28:29 +0000 Great news, Babs! Keep it up. Terry

]]> b61d50533dfa348df164cfd4d241256c http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87223 Wed, 30 Jan 2013 17:25:39 +0000 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]

]]> 802f6481a0df0e06a8d4711421adee49 http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87221 Wed, 30 Jan 2013 01:11:16 +0000 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]

]]> 68388b5ae7d89ce163256008cd7fa684 http://www.myeloma.org.uk/forums/topic/light-chain-myeloma1359057068#post-87219 Tue, 29 Jan 2013 01:15:04 +0000 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]

]]> cf18f788e60da69f672a16a383c34431 http://www.myeloma.org.uk/forums/topic/newly-diagnosed-with-smm#post-86675 Mon, 17 Sep 2012 23:52:51 +0100 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]

]]> f3e9a409914330a77e7e24ebab5b0643 http://www.myeloma.org.uk/forums/topic/kyprolis#post-93244 Wed, 25 Jul 2012 19:31:00 +0100 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]

]]> 0fb24f22165945a0f8699461501f8d0d http://www.myeloma.org.uk/forums/topic/kyprolis#post-93236 Wed, 25 Jul 2012 01:08:20 +0100 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]

]]> 718664804bfecc65d16ee16a1eec4fc4 http://www.myeloma.org.uk/forums/topic/kyprolis#post-93234 Wed, 25 Jul 2012 00:13:50 +0100 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]

]]> 9432548bfc64f59acc6efa5e4f6df041 http://www.myeloma.org.uk/forums/topic/kyprolis#post-93240 Tue, 24 Jul 2012 21:39:24 +0100 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]

]]> 0d913e6fe8f8f0626e12ba78c6db630b http://www.myeloma.org.uk/forums/topic/i-start-carfilzomib-trial-for-newly-diagnosed-this-week#post-98911 Wed, 02 May 2012 02:45:48 +0100 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]

]]> 12aeec652f3799902a1c74c951e08242 http://www.myeloma.org.uk/forums/topic/i-start-carfilzomib-trial-for-newly-diagnosed-this-week Tue, 01 May 2012 19:47:33 +0100 Hi All, Unfortunately, I have progressed to active myeloma in a rather scary fashion. I have been monitored as a smolderer at two cancer centers in the US. I live in New Jersey. Three weeks ago I went to the emergency room with horrible pain in my chest and back right flank—-two pulmonary embolisms. They say I am lucky to be alive. I am on…[Read more]

]]> c95b40a87a357059916855b77e449229 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85625 Mon, 09 Apr 2012 23:47:00 +0100 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]

]]> 321eba91b7dfbec742559e2bf0841872 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85623 Sat, 17 Mar 2012 20:01:44 +0000 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]

]]> b5d186405649b67e92fa0fee66d1863a http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/3/#post-85639 Sun, 11 Mar 2012 21:20:20 +0000 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]

]]> 7992e0927bddfe480e5a7bc580d67bca http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/3/#post-85637 Sun, 11 Mar 2012 13:44:45 +0000 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

]]> 6160362c9f0b93cd642d76f504060a25 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85635 Sat, 10 Mar 2012 01:44:24 +0000 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]

]]> ca96b10bd2f5f65e9e59cd7dd385ce9f http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85621 Thu, 08 Mar 2012 01:10:06 +0000 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]

]]> e1186390bb9e510c743d4a0d2191130a http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85633 Wed, 07 Mar 2012 22:23:54 +0000 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]

]]> 99109da4dd1e87bdfc47a3b42f0bbbf6 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond/page/2/#post-85629 Tue, 06 Mar 2012 23:12:34 +0000 Hi Fadia, Thanks for your response. The protocol generally is not to start treatment until you have CRAB symptoms, i.e. high serum calcium, renal problems (high creatinine), anemia (10.0mg/dl or lower) or bone involvment (lesions, etc.). Some doctors also use the CRABi criteria, namely, the small "i" representing recurrent infections. If I were…[Read more]

]]> 35a8ce5a37513908e1b36e8086a796a7 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond#post-85612 Sun, 04 Mar 2012 12:47:17 +0000 Hi Tom, et al., I have been reading through the discussion forum and I have read many past and current posts. I find them very helpful and I note the ability to continue working for many members. That is my greatest fear, namely, that I won't be able to work and will have to go on disability or take an early retirement at such a young age. I have…[Read more]

]]> e1044d9f7e9df84c1b1042b9288349af http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond#post-85614 Fri, 02 Mar 2012 17:28:07 +0000 Thanks again for welcoming me. FYI–there is one cutting edge trial which is occurring now at our NIH and several other locations involving carfilzomib, revlimid and dex for newly diagnosed patients. Apparently, the results have been very impressive in that the side effects are very limited and many people are going into CR in one cycle, i.e. 28…[Read more]

]]> 0ac02eb4795f25852ff1575f9f157d81 http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond#post-85609 Thu, 01 Mar 2012 23:38:41 +0000 Hi Bridget and Mavis, I am very impressed with the site and the incredible support you give each other. I will definitely check in often. I am lucky they caught my myeloma inadvertently before bone and kidney issues arose but I have to be monitored closely as I have light chain only kappa type which hits the kidneys hard. I am not sure about the…[Read more]

]]> 1fe9105f7d1a7f3a4d3ac8e2da35604e http://www.myeloma.org.uk/forums/topic/hello-i-am-a-newbie-from-across-the-pond Thu, 01 Mar 2012 20:29:20 +0000 Hello, I found this site surfing the net and I really like the useful posts from everyone. I am a 49 year old guy with a wife and two young sons who was diagnosed with myeloma in August, 2011. It was found only because I am on Lipitor, a statin, for high cholesterol. My family doctor referred me to a hematologist for a low white blood count and,…[Read more]

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