Guest guest Report post Posted July 21, 2008 I have many years (hopefully) before I am a grandmother. I just hope and pray that my RA doesn't keep me from enjoying them. I am very stubborn though. > > > > > > > > > > I am new to the group. I was diagnosed with rheumatoid > > athritis just > > > > a > > > > > few hours ago. I'm here to make friends who understand and > > offer > > > > moral > > > > > support. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 26, 2008 Welcome Rob! You have found a great place for info and friends. I have fibro fog most of the time, and it gets complicated,lol Tawny Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 26, 2008 welcome to the group rob... oh listening to people who need to vent i can handle. god bless,melyndagamez 8/26/08 9:30p.m.cst. [ ] Hello I am new to the group and have fibromyalgia. Just wanted to say " hello " and thank you in advance for putting up with me. Rob Ever stop to think, and forget to start again? ------------------------------------ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted August 27, 2008 Hi Rob and welcome to the group. I had to laugh at your signature. I am forever having to stop to think and forgetting where to start up again. There's nothing to " put up with " as we are all in the same boat in one way or another. I have Rheumatoid Arthritis (RA) and Fibromyalgia (FMS)......Doreen > > I am new to the group and have fibromyalgia. Just wanted to say " hello " > and thank you in advance for putting up with me. > > Rob > Ever stop to think, and forget to start again? > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 14, 2008 Betty, Glad to hear your safe. I will keep in my prayers, Tawny > > Thankfully the hurricane did not affect us or . > > will be hospitalized in Miami tomorrow to try to kill that cancer. She will be there 3 days and in a room all by herself. Probably the most unpleasant part of this is boredom. At first they told her that anything that goes in her room will be contaminated so must be destroyed. Now they say that isn't the case so she can bring her computer and cell phone. > Getting ready for this she has been on as low thyroid food as possible so she is looking forward to being able to eat again. Looking for a good result. > Betty > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 14, 2008 Betty, I hope that the next 3 days will not be hard ones. My thoughts and prayers are with you both. God Bless, Shirley > > Thankfully the hurricane did not affect us or . > > will be hospitalized in Miami tomorrow to try to kill that cancer. She will be there 3 days and in a room all by herself. Probably the most unpleasant part of this is boredom. At first they told her that anything that goes in her room will be contaminated so must be destroyed. Now they say that isn't the case so she can bring her computer and cell phone. > Getting ready for this she has been on as low thyroid food as possible so she is looking forward to being able to eat again. Looking for a good result. > Betty > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 15, 2008 That's good the hurricane didn't affect you both. Hope 's treatment goes well. I had the same thing in 2005 and it wasn't fun. will keep you both in my prayers. Debbie L > > Thankfully the hurricane did not affect us or . > > will be hospitalized in Miami tomorrow to try to kill that cancer. She will be there 3 days and in a room all by herself. Probably the most unpleasant part of this is boredom. At first they told her that anything that goes in her room will be contaminated so must be destroyed. Now they say that isn't the case so she can bring her computer and cell phone. > Getting ready for this she has been on as low thyroid food as possible so she is looking forward to being able to eat again. Looking for a good result. > Betty > > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Thats Great a lot of helpful info here. ________________________________ From: Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Welcome to the group. You will find lots of support here and tons of answers to the many questions you probably have.  God Bless, Jackie Schneider dx 4/14/04 From: indayromanos <indayromanos@...> Subject: [ ] hello Date: Saturday, January 31, 2009, 2:55 AM hello folks, i am interested to join the group because of my husband who has also a CML Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Hi, welcome! Was he just recently diagnosed? Is he taking Gleevec? in San Francisco From: indayromanos@... Date: Sat, 31 Jan 2009 08:55:46 +0000 Subject: [ ] hello hello folks, i am interested to join the group because of my husband who has also a CML _________________________________________________________________ Windows Live™ Hotmail®…more than just e-mail. http://windowslive.com/howitworks?ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_howitwor\ ks_012009 Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Hi, welcome, you've come to the right place, lots of good information here, and lots of great people, Bobby a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840Â -Â Â Zavie's Zero Club 09/2006 -Â out of CCR 04/29/08 - XL228 Trial/ U.of Michigan 06/02/08 - CCR ( in 4 weeks) Â From: indayromanos <indayromanos@...> Subject: [ ] hello Date: Saturday, January 31, 2009, 3:55 AM hello folks, i am interested to join the group because of my husband who has also a CML Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Bobby is right (as always). There are tons of great folks always willing to share info, support, and a few jokes from time to time. Be forewarned the humor is sometimes very punny. Seriously, there is a wealth of experience and info among the members. CML and all cancer is laden with fear and trembling, but there are folks here living with the disease for many decades. Have hope and be encouraged. Let us know what you need. Welcome. Sent from my Verizon Wireless BlackBerry [ ] hello Date: Saturday, January 31, 2009, 3:55 AM hello folks, i am interested to join the group because of my husband who has also a CML Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 31, 2009 Glad you have joined us. My Granny is 81 yrs. old and has had CML for a little over 2 years now and she takes 400 mg. of Gleevec daily. Don't hesitate to ask any questions here. Remember we all know or know someone who knows, what you are going through. [ ] hello hello folks, i am interested to join the group because of my husband who has also a CML Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 1, 2009 Welcome to the group, as others have mentioned you have came to the right place to find people to talk to and people with allot of knowledge of our disease. Terry On Sat, Jan 31, 2009 at 6:54 PM, Kristie Skipper <skipper3@...>wrote: > Glad you have joined us. My Granny is 81 yrs. old and has had CML for a > little over 2 years now and she takes 400 mg. of Gleevec daily. Don't > hesitate to ask any questions here. Remember we all know or know someone who > knows, what you are going through. > > [ ] hello > > hello folks, i am interested to join the group because of my husband > who has also a CML > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 1, 2009 Hi to you Sounds like your husband has great support You need it too !! These guys have huge and generous hearts and share info - so just post away any questions - it does not matter if it seems trivial to you - it may help your husband just on hints ; suggestions and further understanding. Don't forget one can have a great life with CML (just have boundaries at times of what can do or if not well at times) Most important thing is for your husband to keep taking those tablets do not have a day off as that is the key to good health with CML What medication and dosage is your husband on and health at present? Sue (Aussie) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 1, 2009 Hi: Glad you signed on to get advice from others with CML, and you can share your knowledge that could help some of us here too. Tell us a little about your husbands diagnosis, and how long he has had CML. If you have any questions, just ask. There is always somebody who can help you out. Welcome!! Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 5, 2009 hi there everybody..my husband works as a policeman and we do not know really where and why did he acquired this illness , he has been diagnosed with CML last 2002 and my God as I remember those times as if heaven was falling upon us with the expensive laboratories and medications but we never lost hope, thanks to some people who never forsaken us, slowly he gained confidence again of himself and until now he is still doing fine and active in his job, thanks to glivec and his hematologist and his DOCTOR above. From: suzzienovember <suzzienovember@...> Subject: [ ] Re: Hello Date: Monday, 2 February, 2009, 5:47 AM Hi: Glad you signed on to get advice from others with CML, and you can share your knowledge that could help some of us here too. Tell us a little about your husbands diagnosis, and how long he has had CML. If you have any questions, just ask. There is always somebody who can help you out. Welcome!! Start chatting with friends on the all-new Pingbox today!! It's easy to create your personal chat space on your blogs. http://ph.messenger./pingbox Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 7, 2009 hello are u cml patient also or a supporter, thanks for the warm welcome.I just cant respond to all right away From: indayromanos <indayromanos@...> Subject: [ ] hello Date: Saturday, January 31, 2009, 3:55 AM hello folks, i am interested to join the group because of my husband who has also a CML Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2009 , Which of the four BPES-related groups on Facebook is it? Probably not the 'Kent' one, OK, but shat still leaves three. I can't see why there needs to be more than 1. Rob W lisaannpower wrote: > > > IF ANYONE IS ON FACEBOOK I HAVE A GROUP CALLED BLEPHAROPHIMOSIS > EPICANTHUS INVERSUS SYNDROME (BPES) IT FOR SUPPORT GROUP.MY SON IS > ALMOST 2 AND BOYFRIEND IS 40.IF THERE IS ANYONE WITH QUESTIONS PLEASE > JOIN. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2009 Rob: I agree there only needs to be one BPES group on facebook. I am guilty (I think) of inadvertently creating the 2nd one. I did a search and somehow did not see the first one. I created it and very quickly realized there was in fact one already. I then went in to try to delete or get rid of the group that I had created and was unable to figure out how to do it. I will revisit this and try to make the one I created inactive or something. Sorry for any confusion I created. --Anne Weber--Chicago, IL USA > > > > > > IF ANYONE IS ON FACEBOOK I HAVE A GROUP CALLED > BLEPHAROPHIMOSIS > > EPICANTHUS INVERSUS SYNDROME (BPES) IT FOR SUPPORT > GROUP.MY SON IS > > ALMOST 2 AND BOYFRIEND IS 40.IF THERE IS ANYONE WITH > QUESTIONS PLEASE > > JOIN. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2009 THE Â only way to delete your group in full is to first delete the members then go in and delete yourself as a member, it will then give you the option to delete the group, if you do not delete everyone before yourself it will just keep the group and give other members a chance to take over so if you want to get rid of it this is the way to do it Tonikka & Chriscanadaneed a photographer?tmareephotography.comtmareephotography.blogspot.comspecial occasion? wedding?updotoyou.com On 18-Feb-09, at 7:33 AM, Anne Weber wrote:Rob:I agree there only needs to be one BPES group on facebook. I am guilty (I think) of inadvertently creating the 2nd one. I did a search and somehow did not see the first one. I created it and very quickly realized there was in fact one already. I then went in to try to delete or get rid of the group that I had created and was unable to figure out how to do it. I will revisit this and try to make the one I created inactive or something. Sorry for any confusion I created. --Anne Weber--Chicago, IL USA> >Â > >Â > > IF ANYONE IS ON FACEBOOK I HAVE A GROUP CALLED> BLEPHAROPHIMOSIS> > EPICANTHUS INVERSUS SYNDROME (BPES) IT FOR SUPPORT> GROUP.MY SON IS> > ALMOST 2 AND BOYFRIEND IS 40.IF THERE IS ANYONE WITH> QUESTIONS PLEASE> > JOIN. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2009 wait i just re looked, anne your group is the only group with actual members, don't delete it!!! it has 23 members whereas the others only have 1-4 members Tonikka & Chrisneed a photographer?tmareephotography.comtmareephotography.blogspot.comspecial occasion? wedding?updotoyou.com On 18-Feb-09, at 7:33 AM, Anne Weber wrote:Rob:I agree there only needs to be one BPES group on facebook. I am guilty (I think) of inadvertently creating the 2nd one. I did a search and somehow did not see the first one. I created it and very quickly realized there was in fact one already. I then went in to try to delete or get rid of the group that I had created and was unable to figure out how to do it. I will revisit this and try to make the one I created inactive or something. Sorry for any confusion I created. --Anne Weber--Chicago, IL USA> >Â > >Â > > IF ANYONE IS ON FACEBOOK I HAVE A GROUP CALLED> BLEPHAROPHIMOSIS> > EPICANTHUS INVERSUS SYNDROME (BPES) IT FOR SUPPORT> GROUP.MY SON IS> > ALMOST 2 AND BOYFRIEND IS 40.IF THERE IS ANYONE WITH> QUESTIONS PLEASE> > JOIN. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 18, 2009 > > > > > > IF ANYONE IS ON FACEBOOK I HAVE A GROUP CALLED BLEPHAROPHIMOSIS > > EPICANTHUS INVERSUS SYNDROME (BPES) IT FOR SUPPORT GROUP.MY SON IS > > ALMOST 2 AND BOYFRIEND IS 40.IF THERE IS ANYONE WITH QUESTIONS PLEASE > > JOIN. > I don't know that this group has a facebook group. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 24, 2009 I am pretty new here too and I am taking care of my husband who has CML and was recently diagnosed. Sorry that you got the news about your daughter but the good news (as I have found out) is that CML is the one Leukemia that can be helped. Gleevec has helped bring my husband's white blood cell count down and his oncologist is wonderfully optimistic about his prognosis. You have come to the right place for support. The people here are awesome and are loaded with helpful information or just a shoulder to lean on. Take care and just hang in there, everything will get better. Hugs Judy Z. From: H <duane36_1999@...> Subject: [ ] Hello Date: Monday, March 23, 2009, 9:27 PM Hi,  I am new to the group and as I am sure you are aware new members probably tend to have received some unfortunate news about a CML diagnosis recently. Well my daughter just found out she had CML over the weekend and we are still getting used to the idea of it. I appreciate the forum you started.  Thank you, Quote Share this post Link to post Share on other sites
Guest guest Report post Posted July 8, 2009 Hi : Please get involved in our group. Don't just check the posts. We have so many people all ages,and from all over the place. Always someone to respond to you at anytime you need advice. We have some new additions to the group, and some of us like me has had CML for many years. I will be at ll years in December of this year. I hope we hear from you. God Bless You Quote Share this post Link to post Share on other sites
