Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 Thanks . It is still all a bit daunting though I'm encouraged by stories like yours and others. I have my 6 month bone marrow in a couple of weeks which I'm not much looking forward to although am keen to know if the cytogenics confirm the PCR data I've seen. This has already been a life changing thing and not all of it bad. It has provided a new perspective. Still early days I know. > > > > Hi all. > > > > Zavie mentioned this group to me and suggested I join and introduce myself. After an initial period trying not to find out too much about CML nor talk to other patients, I've become braver. > > > > I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was Dx in May 09 following a routine blood screen. No symptoms - but the screen showed high platelets (> 1100) but only very slightly raised WBC (just 15). I was referred to my local hospital which initially didn't think it was leukemia but on doing cytogenics discovered 80% Ph+ve cells, which was a shock. My " break " was also described as unusual and because of that, they referred me to the Hammersmith hospital in London, under whose excellent care I've been since. > > > > Fortunately, they said they saw no reason why imatinib wouldn't work. Being " odd " I was worried but so far they have been proven right as my blood counts were normal in just over 3 weeks, and settled down quickly. I've not had new cytogenics done or FISH results yet, and the last time I went to the Hammersmith they hadn't been able to do PCR. However, I'm also visiting my local hopsital and they have just received PCR results from the Hammersmith. I'm a bit cautious about them but they look good - 83% at diagnosis was 0.063% in September - a little over 3 months. I was quite surprised and want to see that confirmed by more tests, but it was good to see. > > > > I now feel lucky to have been Dx'd in the imatinib era and more confident about the future - especially seeing so many here who've been on Gleevec for so long. I know it can stop working but 6 months ago I would have taken where I am now, and side effects are few. To show some gratitude to my medics and esp the Hammersmith, I've also begun to help out with fundraising for their research. Every little bit helps and I've learned how easy (and fun) it can be to put something back. > > > > Looking forward to chatting to you, and good luck to you all. > > > > Regards > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 All Thanks so much for all your messages of encouragement. I'm relieved to report that I saw my consultant at the Hammersmith today and he said " good news - we cannot detect the leukaemia by PCR " . As an added bonus, he said there was really no point in doing the bone marrow and advised me to escape before anyone noticed. I know this isn't the end of the road by any means but it's as good a start as I could wish for. I've had such fabulous support from friends and family, and the CML groups I've joined. And I've met a bunch of great people in the journey so far. I know I'm lucky and am going to keep on helping with fundraising for future research, as well as the current challenge we have in the UK to get the decision of our health authority not to recommend funding dasatinib and nilotinib as second line drugs. Best wishes to all, and keep well. ________________________________ From: Zavie <zmiller@...> Cc: willoughbyr@... Sent: Mon, November 16, 2009 9:57:26 PM Subject: RE: [ ] New member  O!!! YIPPEEE!!! Number 1283 in the Zero Club Zavie Welcome to the group . Zavie _____ From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of willoughbyr@ ymail.com Sent: November 16, 2009 4:56 AM groups (DOT) com Subject: [ ] New member Hi all. Zavie mentioned this group to me and suggested I join and introduce myself. After an initial period trying not to find out too much about CML nor talk to other patients, I've become braver. I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was Dx in May 09 following a routine blood screen. No symptoms - but the screen showed high platelets (> 1100) but only very slightly raised WBC (just 15). I was referred to my local hospital which initially didn't think it was leukemia but on doing cytogenics discovered 80% Ph+ve cells, which was a shock. My " break " was also described as unusual and because of that, they referred me to the Hammersmith hospital in London, under whose excellent care I've been since. Fortunately, they said they saw no reason why imatinib wouldn't work. Being " odd " I was worried but so far they have been proven right as my blood counts were normal in just over 3 weeks, and settled down quickly. I've not had new cytogenics done or FISH results yet, and the last time I went to the Hammersmith they hadn't been able to do PCR. However, I'm also visiting my local hopsital and they have just received PCR results from the Hammersmith. I'm a bit cautious about them but they look good - 83% at diagnosis was 0.063% in September - a little over 3 months. I was quite surprised and want to see that confirmed by more tests, but it was good to see. I now feel lucky to have been Dx'd in the imatinib era and more confident about the future - especially seeing so many here who've been on Gleevec for so long. I know it can stop working but 6 months ago I would have taken where I am now, and side effects are few. To show some gratitude to my medics and esp the Hammersmith, I've also begun to help out with fundraising for their research. Every little bit helps and I've learned how easy (and fun) it can be to put something back. Looking forward to chatting to you, and good luck to you all. Regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2009 Report Share Posted November 30, 2009 That's GREAT NEWS ! Keep up the good work. I just want to say I support your efforts in the UK to get those other drugs approved, it's no good just relying on one. Troxel On Mon, Nov 30, 2009 at 7:47 AM, Willoughby <willoughbyr@...>wrote: > > > All > > Thanks so much for all your messages of encouragement. I'm relieved to > report that I saw my consultant at the Hammersmith today and he said " good > news - we cannot detect the leukaemia by PCR " . As an added bonus, he said > there was really no point in doing the bone marrow and advised me to escape > before anyone noticed. > > I know this isn't the end of the road by any means but it's as good a start > as I could wish for. I've had such fabulous support from friends and family, > and the CML groups I've joined. And I've met a bunch of great people in the > journey so far. I know I'm lucky and am going to keep on helping with > fundraising for future research, as well as the current challenge we have in > the UK to get the decision of our health authority not to recommend funding > dasatinib and nilotinib as second line drugs. > > Best wishes to all, and keep well. > > > > ________________________________ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2010 Report Share Posted April 23, 2010 Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born with bleph. we went through lots of opinions and opthalmologists. We finally found a great surgeon that did a wonderful surgery when he was about 7. He is in Philadelphia, PA at the Childrens Hospital, Dr. Katowitz. My son had severe ptosis. I will post some pics soon of before and after. I still do have lots of questions about this rare eye condition. But I was wondering if anyone knows if there are any other related neurological disorders along with the condition. He seems to have poor motor skills, and he is sensitive to loud noises like loud crowded places, he seems to be slowly overcoming this but I still wonder if there is any other information that anyone knows. I am so happy I found this group, there is not a lot of info about this and we do need to group together and find out more. People seem to think its not that big of a deal but being a parent and not ever expecting a child to be born with it is very difficult. I was a young parent when I had him and now I would love to help others out with more info and find out more myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 Hi! I can only imagine how daunting it must have been for you to have gotten that diagnoses and he seems to have gone through a lot already in his life! In all the information that I have read through, it keeps saying that there is no neurological side effects. However, with him no doubt spending so much time in hospitals (and having tests and all the rest done), where there is a lot of noise and strangers around, the crowds and loud noises may remind him of that. I'm new to this group too but, in my experience, you will get loads of feedback and support here. I know that it has helped me loads already! Pam - Ireland > > Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born with bleph. we went through lots of opinions and opthalmologists. We finally found a great surgeon that did a wonderful surgery when he was about 7. He is in Philadelphia, PA at the Childrens Hospital, Dr. Katowitz. My son had severe ptosis. I will post some pics soon of before and after. I still do have lots of questions about this rare eye condition. But I was wondering if anyone knows if there are any other related neurological disorders along with the condition. He seems to have poor motor skills, and he is sensitive to loud noises like loud crowded places, he seems to be slowly overcoming this but I still wonder if there is any other information that anyone knows. I am so happy I found this group, there is not a lot of info about this and we do need to group together and find out more. People seem to think its not that big of a deal but being a parent and not ever expecting a child to be born with it is very difficult. I was a young parent when I had him and now I would love to help others out with more info and find out more myself. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2010 Report Share Posted April 24, 2010 HIya I know that Shireen - who is the lady who organises on this website - posted information before about this similar questions. It might be worth reading back some posts to see if there is anything there. My understanding is that there are none related to BPES, however it is possible to have them as well as BPES. Lots of love and welcome Clare Teale Herts UK From: tpappalau <tpappalau@...>Subject: blepharophimosis new memberblepharophimosis Date: Friday, 23 April, 2010, 20:09 Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born with bleph. we went through lots of opinions and opthalmologists. We finally found a great surgeon that did a wonderful surgery when he was about 7. He is in Philadelphia, PA at the Childrens Hospital, Dr. Katowitz. My son had severe ptosis. I will post some pics soon of before and after. I still do have lots of questions about this rare eye condition. But I was wondering if anyone knows if there are any other related neurological disorders along with the condition. He seems to have poor motor skills, and he is sensitive to loud noises like loud crowded places, he seems to be slowly overcoming this but I still wonder if there is any other information that anyone knows. I am so happy I found this group, there is not a lot of info about this and we do need to group together and find out more. People seem to think its not that big of a deal but being a parent and not ever expecting a child to be born with it is very difficult. I was a young parent when I had him and now I would love to help others out with more info and find out more myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2010 Report Share Posted April 25, 2010 I'm not aware of any related neurological conditions -- our son, though, had his first surgery at 6 1/2 weeks due to his severe ptosis (he's now almost 5 months) and he's also very sensitive to loud places and noises. While I don't have any proof, I really think that because he couldn't see anything for the first 6 weeks of his life that his hearing may just be really good and this may cause the extra sensitivity. I'm sure this will be something he'll eventually outgrow or learn to deal with. From: tpappalau <tpappalau@...>blepharophimosis Sent: Fri, April 23, 2010 3:09:57 PMSubject: blepharophimosis new member Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born with bleph. we went through lots of opinions and opthalmologists. We finally found a great surgeon that did a wonderful surgery when he was about 7. He is in Philadelphia, PA at the Childrens Hospital, Dr. Katowitz. My son had severe ptosis. I will post some pics soon of before and after. I still do have lots of questions about this rare eye condition. But I was wondering if anyone knows if there are any other related neurological disorders along with the condition. He seems to have poor motor skills, and he is sensitive to loud noises like loud crowded places, he seems to be slowly overcoming this but I still wonder if there is any other information that anyone knows. I am so happy I found this group, there is not a lot of info about this and we do need to group together and find out more. People seem to think its not that big of a deal but being a parent and not ever expecting a child to be born with it is very difficult. I was a young parent when I had him and now I would love to help others out with more info and find out more myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2010 Report Share Posted June 21, 2010 I wanted to ad the tightness does travel to the other side, relieving the usual side. So it's not a stroke. I also had slight anaphlaxic reactions. Have trouble swallowing by deli & freezer sections. Or if anyone's cooking wheat pasta, coated meat, & pizza. It's hard trying to convince my husband & teen daughter to go GFCF, until we are a family divided. In that house I got pressure in my ears from touching wheat bread, which left after leaving. We have thrown out everything from the basement & a lot of other things. It's hard but you have to. I can't imagine what was growing in the walls. Anyone try pygnogenol? It helped clear my head & lowers cholesterol if you're in need. Is related to aspirin if you're sensitive. Have some of you stop using satellite TV? We can still get wired. EMF's cause pressure. I feel the energy from lightening during storms. limit cell phonse. Heard there is some protection thing you can put on a cell phone to block. What was that device that blocks emfs? Kathy Quote Link to comment Share on other sites More sharing options...
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