http://groups.yahoo.com/group/mycosisfungoidesint/ Mycosis Fungoides International Wed, 15 May 2013 09:35:18 GMT Paul Joosten http://groups.yahoo.com/group/mycosisfungoidesint/message/652 http://groups.yahoo.com/group/mycosisfungoidesint/message/652 Hi Meg, Burning from UVB should not need to happen at all, just like in sun bathing on the beach only now with proper supervision. There are rule of thumb Tue, 14 May 2013 23:41:49 GMT Meg Hanayik http://groups.yahoo.com/group/mycosisfungoidesint/message/651 http://groups.yahoo.com/group/mycosisfungoidesint/message/651 Thank you both for your responses and advice. I put a call into the doctor today to follow up on my latest appointment and ask about his certainty of the Tue, 14 May 2013 07:35:36 GMT PatD http://groups.yahoo.com/group/mycosisfungoidesint/message/650 http://groups.yahoo.com/group/mycosisfungoidesint/message/650 Hi Meg Biopsies don't always give categorical answers and may read along the lines of "suspicious for ..." and so on. For most people, the MF stays as a skin Tue, 14 May 2013 06:57:15 GMT Paul Joosten http://groups.yahoo.com/group/mycosisfungoidesint/message/649 http://groups.yahoo.com/group/mycosisfungoidesint/message/649 Hi Meg, Diagnosis can indeed be extremely dificult but biopsies repeatedly coming up negative? Doesn't sound familiar to me. I hope you get some kind of Tue, 14 May 2013 01:17:45 GMT Meg Hanayik http://groups.yahoo.com/group/mycosisfungoidesint/message/648 http://groups.yahoo.com/group/mycosisfungoidesint/message/648 Hello! I recently joined the group and was hoping to find some guidance/advice. I have had quite an eventful year dealing with a diagnosis of MF. Last summer Wed, 08 May 2013 17:46:04 GMT Pat Dreyer http://groups.yahoo.com/group/mycosisfungoidesint/message/647 http://groups.yahoo.com/group/mycosisfungoidesint/message/647 Hi I had to do some googling to find out what NAIT is! I've never heard of anyone with this and certainly not on this or the previous support group I Tue, 07 May 2013 21:20:34 GMT silly_sam85 http://groups.yahoo.com/group/mycosisfungoidesint/message/646 http://groups.yahoo.com/group/mycosisfungoidesint/message/646 Hi all, Just thought I would stop by to update.. I now have a little boy (6 months old) who is doing wonderfully despite having a diagnosis of neonatal Tue, 30 Apr 2013 18:14:22 GMT Lynn Betts http://groups.yahoo.com/group/mycosisfungoidesint/message/645 http://groups.yahoo.com/group/mycosisfungoidesint/message/645 http://vonrupp.com/wp-content/themes/twentytwelve/ben.php?slpdxpyaw782tkf ==================== You're listening to a man so small, he couldn't break a Cheerio. Tue, 30 Apr 2013 01:39:51 GMT Lynn Betts http://groups.yahoo.com/group/mycosisfungoidesint/message/644 http://groups.yahoo.com/group/mycosisfungoidesint/message/644 Single Mom Makes $89,844/Yr in Her Spare Time on The Computer Without Selling Anything http://www.organisation-mariage-evenementiel.com/hwork56.php 4/30/2013 Tue, 26 Feb 2013 19:44:34 GMT Martin Lynn http://groups.yahoo.com/group/mycosisfungoidesint/message/643 http://groups.yahoo.com/group/mycosisfungoidesint/message/643 Thanks for the reply Pat, At 1 x point i was staged at 4a when it got into my lymph glands,the glands had anaplastic large cell Lymphoma in them....started Tue, 26 Feb 2013 19:29:46 GMT Pat Dreyer http://groups.yahoo.com/group/mycosisfungoidesint/message/642 http://groups.yahoo.com/group/mycosisfungoidesint/message/642 Hi Martin Your attitude is great and this will carry you through your fight with our common disease. You're being treated by one of the very best MF Tue, 26 Feb 2013 18:51:40 GMT lynny0369 http://groups.yahoo.com/group/mycosisfungoidesint/message/641 http://groups.yahoo.com/group/mycosisfungoidesint/message/641 Anyone else had this happen? Had Lymphomatoidpapulosis for 25 years (43 now)Now have associated Mycosis Fungoides that spread to my Lymph nodes both sides of Mon, 11 Feb 2013 09:08:41 GMT John Mecoy http://groups.yahoo.com/group/mycosisfungoidesint/message/640 http://groups.yahoo.com/group/mycosisfungoidesint/message/640 Hi Pat, Thanks for your message. I find that taking nauseating medicine with cold custard helps it to slip away quite nicely. John Mecoy Mon, 11 Feb 2013 09:04:28 GMT Pat Dreyer http://groups.yahoo.com/group/mycosisfungoidesint/message/639 http://groups.yahoo.com/group/mycosisfungoidesint/message/639 Hi Being in the US, Judy can answer this with more knowledge than I have! I will never understand why medicine is so expensive! Eating some ginger biscuits and Fri, 11 Jan 2013 00:58:56 GMT Judy Jones http://groups.yahoo.com/group/mycosisfungoidesint/message/638 http://groups.yahoo.com/group/mycosisfungoidesint/message/638 The Lymphoma Research Foundation is going to have a teleconference on Hodgkin and T-Cell Lymphomas on January 30th from 1:30 pm to 2:30 pm EST. There is no