tag:blogger.com,1999:blog-5851425412708638764.post4986895890339990374..comments2023-08-11T04:37:16.576-07:00Comments on Surviving with Systemic Mastocytosis: Live Well..Love Much..Laugh Often: So Far So Good!Kevinhttp://www.blogger.com/profile/17197927892390298693noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-5851425412708638764.post-5207563995934035302012-02-24T09:23:52.770-08:002012-02-24T09:23:52.770-08:00I was recently diagnosed with sm and now they are ...I was recently diagnosed with sm and now they are checking for aggression. I am scared and worried. I never feel good and have been in pain for a couple of years. Its nice to know there are other people to talk too about it . I tried looking kevin up on facebook and couldn't find him .heathernoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-37664099606379615102011-05-28T10:41:55.609-07:002011-05-28T10:41:55.609-07:00Hi my names,Michele and i've been living with ...Hi my names,Michele and i've been living with this for over 10years.I've never met or been in contact with anyone who has the same illness as me maybe i'm was scared of knowing too much going back a few years.I lived well with this and i would like to share what i have found out what helps me thats all <br /><br />Take careMichelenoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-59950875536968878712011-05-28T10:39:15.320-07:002011-05-28T10:39:15.320-07:00This comment has been removed by a blog administrator.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-51994630646800273172010-09-05T21:01:14.034-07:002010-09-05T21:01:14.034-07:00I'm glad to see so many people still reading m...I'm glad to see so many people still reading my blog. I hope it has helped with questions you may have had regarding our illness. In some strange way it's nice to know that we are not alone!<br /><br />KevinKevinhttps://www.blogger.com/profile/17197927892390298693noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-13729384946076447482010-09-05T19:36:49.253-07:002010-09-05T19:36:49.253-07:00Hi Kevin,i was diagnosed with SM just recently ...Hi Kevin,i was diagnosed with SM just recently in may 2010.I had a tumor in my femur that was mast cells.They removed the part of the femur and put supports on my femur bone.I had the same operation 24 yrs ago in the millitary.Just a quick update but il post more. thx..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-23044860909623226352010-09-01T23:13:01.937-07:002010-09-01T23:13:01.937-07:00Hi Kevin
Great news on the "no change" b...Hi Kevin<br />Great news on the "no change" but one for the better would have been welcome.<br />My mom was recently diagnosed with SM after 20years of suffering from this "idiopathic flushing syndrome" as they've been calling it. It's a long story but I'll give you the short version for now.<br /><br />My mom is fantastic, a strong woman! She started with the attacks Feb 1990. Through the years she's experienced anaphylactic shock 4 times and was lucky to be brought back each time. <br /><br />Last year in March she had a severe attack and was hospitalized (once again) and the specialist sent a blood sample to America to test for Masto. We never heard from them again until a month ago when she ended up in hospital with a bad attack again (ambulance as usual) I was infuriated when the doctor casually informed us that the results for Masto were positive!!!<br /><br />Then about 6 weeks ago, mom started hitting out in welts all over her body and face and this was diagnosed (biopsy) as Urticaria. As if she needed any further complications!!<br /><br />We have since been to see an oncologist in Pretoria. They did a bone marrow test 3 weeks ago and we went to see her partner (as she was off sick) who informed us that mom has Mast Cell Leukemia. What a shocker!! The prognosis for MCL is weeks to 6 months! Then today I managed to see moms doc and she confirmed that she only has SM. I guess if you don't have SM or are close to someone who has SM you can say "only" but it's most definitely not an "only" disease. <br /><br />Sorry I am rather frustrated and angry with the medical profession by now. <br /><br />Mom started on Gleevic today, with a mild reaction, but they have assured us that it's normal.<br /><br />I am not sure what is normal and what is not anymore. All the information I read is just too much to deal with. But we will keep spirits high for her and take it one day at a time for now.<br /><br />I wrote the above yesterday and did not hit send.....<br /><br />Just found out that mom had a bad attack in the night. I will now have to find out if this Gleevic must be continued or stopped. I do not trust doctors anymore. Not after 20 years of all these frustrations.<br /><br />Must run but will chat soon again.<br /><br />Take care and thank for your blog, it helps to have someone out there who knows what this is like.<br /><br />Will look for you on FaceBook<br /><br />BelindaBelindahttps://www.blogger.com/profile/09592356452360020583noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-33341924842149196542010-08-27T15:10:32.674-07:002010-08-27T15:10:32.674-07:00You are very welcome Momin. I wish you and your hu...You are very welcome Momin. I wish you and your husband the very best!!! Let me know how the biopsy goes. <br /><br />KevinKevinhttps://www.blogger.com/profile/17197927892390298693noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-88977978707254315472010-08-27T14:07:57.798-07:002010-08-27T14:07:57.798-07:00Hi Kevin, I just wanted to let you know that I'...Hi Kevin, I just wanted to let you know that I'm reading a bit. My husband is about to go for a bone marrow biopsy to find out if this is indeed his diagnosis. Thanks for the great blog.shastastevenshttps://www.blogger.com/profile/04280161146135058117noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-46938114793732362852010-08-10T18:19:15.857-07:002010-08-10T18:19:15.857-07:00I was not always able to tolerate the alcohol, I t...I was not always able to tolerate the alcohol, I think I'm doing better because of the new drug / chemo I'm on that enables me to tolerate things better. I could also just be going through a good phase if you know what I mean. I'm glad you commented, wish you the best please keep in touch.<br /><br />KevinKevinhttps://www.blogger.com/profile/17197927892390298693noreply@blogger.comtag:blogger.com,1999:blog-5851425412708638764.post-12655569736821466222010-08-10T16:54:25.391-07:002010-08-10T16:54:25.391-07:00Glad to see you are so upbeat. I was diagnosed wit...Glad to see you are so upbeat. I was diagnosed with it about 6 years ago but had it longer. It's great that you were able to tolerate alcohol. Even the tiniest sip causes me such intense ulcerative pain and flushing that I have to avoid it. What a drag. I was not a candidate for the Geevac so I get by with antihistamines and PUVA. Wish there was something better.Anonymousnoreply@blogger.com