[CMLHope] eye bleeds
Good to hear from Jim and Peg. I recently had the same thing happen to me. I was in my onc's office and my daughter told me my eye was really red. I actually had an eye bleed in the Onc's office. He said he couldn't say it was from the Sprycel and called in the pharmacist and she said the same thing. Well, so much for their knowledge about Sprycel. I was still curious and looked it up right when I got home. There it is, right on the Sprycel site. This medicine can cause eye bleeds. We must do our own research. I had one more episode of eye bleed and then they went away. Hang in there and fight! We are Warriors every one of us. Blessings, Jeanie<3 In a message dated 4/29/2013 1:15:55 A.M. Eastern Daylight Time, drodegh...@sbcglobal.net writes: Hi Marcie, I have been a CML patient since 19997, started on Interferon then got on Gleevec as soon as it was approved here in the states. After about one year they couldn't find any trace of the cancer, what a wonderful gift God had given me. At first I didn't notice any different side effects than I'd had on interferon the tingling in my feet and numbness was still there as were the leg cramps at night. I was still working at that time and then the cramps came more often and were more severe, they also lasted longer than before some times for 20 minutes and longer. Then I had my first eye bleed, I worked as a Conductor on a commuter train in Chicago and a passenger asked what happened to your eye. I had no clue what he was talking about so he said that the white part of my eye was completely red. Now that was great news early in the morning! I was amazed that I never felt it, had no idea what I looked like because it wasn't that way before I left the house. Now my hands, back, even the sides of my neck and legs cramp. But as we warriors say life goes on and it's still great to be here! We must never give in to this disease we are fighters and the war goes on. I look at all the advancements that have been made since being DXed and am so happy for those having been made some day there will be the advancement we all pray for and no one else will have to suffer with this any more! 18s to all you fellow warriors as well as my prayers Jim Rodeghier --- On Sun, 4/28/13, margoo...@aol.com wrote: From: margoo...@aol.com Subject: Re: [CMLHope] AND THEN IT'S WINTER. To: cmlhope@googlegroups.com Date: Sunday, April 28, 2013, 8:33 AM Dearest Marty: So beautifully written and I totally relate in many ways. In my head, I'm still pretty young, my 30s, except for the fact that years on Gleevec have impacted my short term memory. I will turn 61 on May 7th and most days my body feels like I am 161. I do work full time in a high stress job because it is in politics. You can only imagine. I also wrote Maryland's landmark bullying prevention bill and I serve as the Maryland Director of Bully Police USA, a national advocacy group that monitors state and federal anti bullying laws. As if all of that isn't enough, I am a lieutenant in the Maryland Defense Force, backup to the Maryland National Guard. We are not armed but a group of volunteers who provide services such as free medical, dental and legal care to members of the MNG and we kick in to help when there are storms and such with providing food, transportation, etc. to those who are in need, in Maryland and other states (such as when Katrina hit). When I was diagnosed, I decided that CML was not a death sentence but a chance to live my life and make every day count. It has been at times a very tough road, as I had a mini stroke in April of 2010. It left no lasting imprint but it was very scary. My husband had a widow maker heart attack but he is a walking miracle. My mom passed away and April 3rd was the first anniversary. She spent 6 1/2 years in and out of hospitals and nursing homes. My 64 year old brother in law died suddenly in July and one month ago my 92 year old dad had a stroke. He has made no progress, in fact he is worse, and is no in permanent long term nursing care. Despite all of this, life is a wonderful thing. We also see people and wonder "do we look like that?" But it is so joyful to wake up every day and know that my husband, the kindest and most wonderful man I know, has woken up and that the other important people in my life have as well. I feel so blessed by the many great things in my life and one of them is that I am on this site with such incredible people like you. I pray for all of us and as promised, your note will go in the Wall when we go to Israel (God willing) on May 21st. You should be named a national treasure! 18s to you. Marcie -Original Message- From: Marty Gartenberg To: CMLHope Sent: Sun, Apr 28, 2013 7:46 am Subject: [CMLHope] AND THEN IT'S WINTER. MY LIFE HAS BEEN AN ADVENTURE OF SORTS, AND THEN I
Re: [CMLHope] eye bleeds
Thank you Susan, mine is still pretty red; wish I could go off the meds. It seems my body is rebelling against anymore Sprycel. I feel like I'm in a fog and my eye is hurting. My mother and grandmother had strokes at my age. Thanks again, Jeanie<3 In a message dated 3/30/2013 10:37:48 P.M. Eastern Daylight Time, rszim0...@aol.com writes: Thank you Marcie for reminding me to respond. I also spoke with Dr. Druker both in person and through e-mails. He is very helpful to all of us if we contact him. He assured me of just what Marcie said, that it is not dangerous to have eye bleeds. Of course they are caused by gleevec no matter what the doctors say. And yes they take about 5 or 6 days to disappear. I am still a walking miracle with being off gleevec for six years and still in cellular remission. I am doing this against Dr's orders because I had two brain bleeds and two years after being off gleevec had a full-blown stroke at age 58. I do know my family's medical history has a tendency for this hematoma in the brain. It is what caused my father's death. I am enjoying every day as a gift. Happy Resurrection Day to all! and 18's, Susan -Original Message- From: Marcie Goodman To: cmlhope Sent: Sat, Mar 30, 2013 5:02 pm Subject: Re: [CMLHope] eye bleeds Hi Jeanie: I totally agree that the eye doctors and even the best hematologists and oncologists don't get the eye bleeds. I just had my 4 year anniversary of diagnosis and starting gleevec. I've had numerous eye bleeds, had them checked out with the best opthamologist at Johns Hopkins here in Baltimore. They tell me it is not the gleevec. Of course, it is. I emailed Dr. Druker last year because I was concerned about the bleeds and also the possibility of a brain bleed, as I think Susan on this site has unfortunately experienced. Dr. Druker told me that eye bleeds are a side effect some patients experience but they are not dangerous. I was greatly relieved to hear that and touched that he responded to me, a total stranger, immediately. When I have a bleed, almost always in my left eye, I use warm compresses and if it is a particularly bad hemorrhage, I use an eye patch if I am at work or going out. The pirate look - better than people feeling squeamish because your eye looks disgusting. Generally these clear up quickly although it can take up to 5 or 6 days for all traces to disappear. I've had a couple of eye bleeds that hurt and one or two where around my eye on the outside it bruised, a black eye. It was explained to me that because the vessels burst inside there was a bruise on the outside, much as you would have if you bang your hand or leg or anything and bruise. Hope this is helpful. Hang in there and feel better. God bless and best wishes for a lovely holiday. Marcie Sent from my iPad On Mar 30, 2013, at 4:01 PM, _ICANDOALLTTC@aol.com_ (mailto:icandoall...@aol.com) wrote: Hello everyone, My eye is still red and hurts a little. I have been applying cold compresses. The problem is an eye doctor wouldn't understand the meds I am taking and what they do, however I will go soon if it doesn't clear up. Anyone with advice on Eye bleeds Jeanie<3 In a message dated 3/24/2013 7:29:39 P.M. Eastern Daylight Time, _icandoallttc@aol.com_ (mailto:icandoall...@aol.com) writes: Symptoms brain bleed Nausea headache blurred vision bad balance Numb tingling and others Make sure to get your blood checked often As your counts can drop fast Jeanie Sent from my iPhone On Mar 23, 2013, at 11:27 PM, _patrickemailguard-goog@yahoo.com_ (mailto:patrickemailguard-g...@yahoo.com) wrote: Penny, if something was making me wonder if I was having a brain bleed I would be on my way to the ER. Patrick --- On Sat, 3/23/13, Penny <_Boogie_Woogie@yahoo.com_ (mailto:boogie_woo...@yahoo.com) > wrote: From: Penny <_Boogie_Woogie@yahoo.com_ (mailto:boogie_woo...@yahoo.com) > Subject: Re: [CMLHope] Tasigna To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Date: Saturday, March 23, 2013, 9:53 PM Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@_aol.com_ (http://aol.com/) wrote: This is great news about Tasigna! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding. Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding. I am going soon for
Re: [CMLHope] eye bleeds
Thank you Marcie for reminding me to respond. I also spoke with Dr. Druker both in person and through e-mails. He is very helpful to all of us if we contact him. He assured me of just what Marcie said, that it is not dangerous to have eye bleeds. Of course they are caused by gleevec no matter what the doctors say. And yes they take about 5 or 6 days to disappear. I am still a walking miracle with being off gleevec for six years and still in cellular remission. I am doing this against Dr's orders because I had two brain bleeds and two years after being off gleevec had a full-blown stroke at age 58. I do know my family's medical history has a tendency for this hematoma in the brain. It is what caused my father's death. I am enjoying every day as a gift. Happy Resurrection Day to all! and 18's, Susan -Original Message- From: Marcie Goodman To: cmlhope Sent: Sat, Mar 30, 2013 5:02 pm Subject: Re: [CMLHope] eye bleeds Hi Jeanie: I totally agree that the eye doctors and even the best hematologists and oncologists don't get the eye bleeds. I just had my 4 year anniversary of diagnosis and starting gleevec. I've had numerous eye bleeds, had them checked out with the best opthamologist at Johns Hopkins here in Baltimore. They tell me it is not the gleevec. Of course, it is. I emailed Dr. Druker last year because I was concerned about the bleeds and also the possibility of a brain bleed, as I think Susan on this site has unfortunately experienced. Dr. Druker told me that eye bleeds are a side effect some patients experience but they are not dangerous. I was greatly relieved to hear that and touched that he responded to me, a total stranger, immediately. When I have a bleed, almost always in my left eye, I use warm compresses and if it is a particularly bad hemorrhage, I use an eye patch if I am at work or going out. The pirate look - better than people feeling squeamish because your eye looks disgusting. Generally these clear up quickly although it can take up to 5 or 6 days for all traces to disappear. I've had a couple of eye bleeds that hurt and one or two where around my eye on the outside it bruised, a black eye. It was explained to me that because the vessels burst inside there was a bruise on the outside, much as you would have if you bang your hand or leg or anything and bruise. Hope this is helpful. Hang in there and feel better. God bless and best wishes for a lovely holiday. Marcie Sent from my iPad On Mar 30, 2013, at 4:01 PM, icandoall...@aol.com wrote: Hello everyone, My eye is still red and hurts a little. I have been applying cold compresses. The problem is an eye doctor wouldn't understand the meds I am taking and what they do, however I will go soon if it doesn't clear up. Anyone with advice on Eye bleeds Jeanie<3 In a message dated 3/24/2013 7:29:39 P.M. Eastern Daylight Time, icandoall...@aol.com writes: Symptoms brain bleed Nausea headache blurred vision bad balance Numb tingling and others Make sure to get your blood checked often As your counts can drop fast Jeanie Sent from my iPhone On Mar 23, 2013, at 11:27 PM, patrickemailguard-g...@yahoo.com wrote: Penny, if something was making me wonder if I was having a brain bleed I would be on my way to the ER. Patrick --- On Sat, 3/23/13, Pennywrote: From: Penny Subject: Re: [CMLHope] Tasigna To: cmlhope@googlegroups.com Date: Saturday, March 23, 2013, 9:53 PM Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@aol.com wrote: This is great news about Tasigna! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding.Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding.I am going soon for another bcr/abl test, it's been a year.I am so thankful I'm still in cellular remission. This doctor yesterday said don't wait until you come out of remission because you could go into blast phase. Pray that things come together for me financially to do this. By the way, what si
Re: [CMLHope] eye bleeds
Hi Jeanie: I totally agree that the eye doctors and even the best hematologists and oncologists don't get the eye bleeds. I just had my 4 year anniversary of diagnosis and starting gleevec. I've had numerous eye bleeds, had them checked out with the best opthamologist at Johns Hopkins here in Baltimore. They tell me it is not the gleevec. Of course, it is. I emailed Dr. Druker last year because I was concerned about the bleeds and also the possibility of a brain bleed, as I think Susan on this site has unfortunately experienced. Dr. Druker told me that eye bleeds are a side effect some patients experience but they are not dangerous. I was greatly relieved to hear that and touched that he responded to me, a total stranger, immediately. When I have a bleed, almost always in my left eye, I use warm compresses and if it is a particularly bad hemorrhage, I use an eye patch if I am at work or going out. The pirate look - better than people feeling squeamish because your eye looks disgusting. Generally these clear up quickly although it can take up to 5 or 6 days for all traces to disappear. I've had a couple of eye bleeds that hurt and one or two where around my eye on the outside it bruised, a black eye. It was explained to me that because the vessels burst inside there was a bruise on the outside, much as you would have if you bang your hand or leg or anything and bruise. Hope this is helpful. Hang in there and feel better. God bless and best wishes for a lovely holiday. Marcie Sent from my iPad On Mar 30, 2013, at 4:01 PM, icandoall...@aol.com wrote: > Hello everyone, My eye is still red and hurts a little. I have been applying > cold compresses. The problem is an eye doctor wouldn't understand the meds I > am taking and what they do, however I will go soon if it doesn't clear up. > Anyone with advice on Eye bleeds > Jeanie<3 > > In a message dated 3/24/2013 7:29:39 P.M. Eastern Daylight Time, > icandoall...@aol.com writes: > Symptoms brain bleed > Nausea headache blurred vision bad balance > Numb tingling and others > Make sure to get your blood checked often > As your counts can drop fast > Jeanie > > Sent from my iPhone > > On Mar 23, 2013, at 11:27 PM, patrickemailguard-g...@yahoo.com wrote: > >> >> Penny, if something was making me wonder if I was having a brain bleed I >> would be on my way to the ER. >> Patrick >> >> --- On Sat, 3/23/13, Penny wrote: >> >> From: Penny >> Subject: Re: [CMLHope] Tasigna >> To: cmlhope@googlegroups.com >> Date: Saturday, March 23, 2013, 9:53 PM >> >> Hi, >> >> How do you know if you have had a brain bleed. I just started on Sprycel 2 >> weeks ago... Penny >> >> On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@aol.com wrote: >> >> This is great news about Tasigna! I spoke yesterday to a doctor in >> charge of a clinical trial. He advised me with my history of bleeding in >> the brain to NEVER take sprycel, said it is well known that it causes >> bleeding. All my other doctors have been wanting me to go on it! He >> advised tasigna only, as it is the only one that does not have the slight >> side effect for those who are prone to have bleeding. Very very important >> news for me, as I've not been on anything for four and a half years. >> Gleevec caused bleeding. I am going soon for another bcr/abl test, it's >> been a year. I am so thankful I'm still in cellular remission. This doctor >> yesterday said don't wait until you come out of remission because you could >> go into blast phase. Pray that things come together for me financially to >> do this. By the way, what side effects come with tasigna??? >> >> 18's, >> >> Susan F. Zimmerman >> >> >> -Original Message- >> From: Suzan Collins >> To: cmlhope >> Sent: Mon, Oct 31, 2011 9:39 pm >> Subject: Re: [CMLHope] Tasigna >> >> Hi I don't post much. I was dxed in June 2004. I had never reached all zeros >> before and it always stayed around .004. I had so much trouble with severe >> side effects from gleevec and sprycel and sprycel also gave me skin ulcers. >> So he put me on tasigna . I have been on tasigna for nearly 2 years and >> from the beginning I continued to have trouble with bad side effects two >> months later. So my doctor decided to put me on 200 mgs once every other >> day. The side effects declined immensely and my last fish test was all zeros >> so even though it is only 200 mgs every other day tasigna has kept my CML >> under control. So good luck. I hope that you can get they same results that >> I have. >> Suzan >> >> From: kellyelise >> To: CMLHope >> Sent: Monday, October 31, 2011 8:24 PM >> Subject: [CMLHope] Tasigna >> >> Marty...tweet, tweet? Ha ha ha!! You are so funny!! >> >> AnywayMy PA from MDAnderson in compliance with Dr. Cortes have >> allowed me to take Tasigna @ 200mg daily. It is less that the >> recommended dose but they are hoping to lessen side effects but at the >> sa
[CMLHope] eye bleeds
Hello everyone, My eye is still red and hurts a little. I have been applying cold compresses. The problem is an eye doctor wouldn't understand the meds I am taking and what they do, however I will go soon if it doesn't clear up. Anyone with advice on Eye bleeds Jeanie<3 In a message dated 3/24/2013 7:29:39 P.M. Eastern Daylight Time, icandoall...@aol.com writes: Symptoms brain bleed Nausea headache blurred vision bad balance Numb tingling and others Make sure to get your blood checked often As your counts can drop fast Jeanie Sent from my iPhone On Mar 23, 2013, at 11:27 PM, _patrickemailguard-goog@yahoo.com_ (mailto:patrickemailguard-g...@yahoo.com) wrote: Penny, if something was making me wonder if I was having a brain bleed I would be on my way to the ER. Patrick --- On Sat, 3/23/13, Penny <_Boogie_Woogie@yahoo.com_ (mailto:boogie_woo...@yahoo.com) > wrote: From: Penny <_Boogie_Woogie@yahoo.com_ (mailto:boogie_woo...@yahoo.com) > Subject: Re: [CMLHope] Tasigna To: _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com) Date: Saturday, March 23, 2013, 9:53 PM Hi, How do you know if you have had a brain bleed. I just started on Sprycel 2 weeks ago... Penny On Tuesday, November 1, 2011 1:22:54 PM UTC-6, rszi...@_aol.com_ (http://aol.com/) wrote: This is great news about Tasigna! I spoke yesterday to a doctor in charge of a clinical trial. He advised me with my history of bleeding in the brain to NEVER take sprycel, said it is well known that it causes bleeding. All my other doctors have been wanting me to go on it! He advised tasigna only, as it is the only one that does not have the slight side effect for those who are prone to have bleeding. Very very important news for me, as I've not been on anything for four and a half years. Gleevec caused bleeding. I am going soon for another bcr/abl test, it's been a year. I am so thankful I'm still in cellular remission. This doctor yesterday said don't wait until you come out of remission because you could go into blast phase. Pray that things come together for me financially to do this. By the way, what side effects come with tasigna??? 18's, Susan F. Zimmerman -Original Message- From: Suzan Collins To: cmlhope Sent: Mon, Oct 31, 2011 9:39 pm Subject: Re: [CMLHope] Tasigna Hi I don't post much. I was dxed in June 2004. I had never reached all zeros before and it always stayed around .004. I had so much trouble with severe side effects from gleevec and sprycel and sprycel also gave me skin ulcers. So he put me on tasigna . I have been on tasigna for nearly 2 years and from the beginning I continued to have trouble with bad side effects two months later. So my doctor decided to put me on 200 mgs once every other day. The side effects declined immensely and my last fish test was all zeros so even though it is only 200 mgs every other day tasigna has kept my CML under control. So good luck. I hope that you can get they same results that I have. Suzan From: kellyelise To: CMLHope Sent: Monday, October 31, 2011 8:24 PM Subject: [CMLHope] Tasigna Marty...tweet, tweet? Ha ha ha!! You are so funny!! AnywayMy PA from MDAnderson in compliance with Dr. Cortes have allowed me to take Tasigna @ 200mg daily. It is less that the recommended dose but they are hoping to lessen side effects but at the same time put the CML back under control. I "think" she said my PCR was 0.333% (does that make sense?). I have never come out of remission in 4 years until now (boo!). She also said I am showing no evidence of the Philadelphia chromosome. I have no idea what this all means since I cannot retain anything, but, I am hoping it is good news. Any advice, knowledge, etc., would be greatly appreciated. I am currently in the market for a heme/onc and will be looking 50 miles to the West (Cleveland, OH) or 50 miles to the East (Erie, PA). I asked my NP at CCF for some guidance and hopefully she can provide some. 18s to everyone! Kelly -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) -- --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to CMLHope-u...@ googlegroups.com For more options, visit this group at _http://groups.google.com/ group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) -- --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to cml...@googlegroups.com To unsubscribe from this group, send email to CMLHope-u...@ googlegroups.com For more options, visit this gr
Re: [CMLHope] Eye bleeds.
Yah Patrick! Glad you are doing so well. Tasigna didn't work for me. I had to go on sprycel. It's working good. It seems these meds dry out our skin and eyes. Use a some good eye drops to keep the eyes moist. Cool water helps a lot. A worry would be if the cells are bleeding, might they be bleeding in other areas? Yes check with your doctor for sure. Jeanie<3 In a message dated 1/23/2013 3:15:20 P.M. Eastern Standard Time, patrickemailguard-g...@yahoo.com writes: As other CMLer's have pointed out, yes Gleevec causes eye bleeds. You do need to make your doctor aware that you are having them. And most are no big deal and go away on their own. But they can be severe enough to stop Gleevec and possibly require other medical intervention. It just depends on how bad yours are. If you're in doubt insist on seeing your doctor right away. If they are like the eye bleeds most of us have had just let them know about the event and likely you will just follow up at your your next appointment. Mine were very mild compared to most people's. But that's still one more thing I don't miss about Gleevec. (I'm a month away from 2 years on Tasigna and a year of PCRU.) If your eyes itch, rubbing is not an option. I got relief with a cold washcloth gently dabbed on closed eyes. Patrick --- On Wed, 1/23/13, Dorisbmt wrote: From: Dorisbmt Subject: [CMLHope] Eye bleeds. To: cmlhope@googlegroups.com Date: Wednesday, January 23, 2013, 10:17 AM I have had eye bleeds but I don't know if gleevec has anything to do with it. I've been on gleevec since 2002. Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
Wow! Millie, that is cold. It has been cold here also for Florida. I am running my heater right now. The sun is out but it's still cold at least for me. Going to take my daily walk, and eat an orange. I call it my D&C. hehe Glad your home health care of over, but when you need it you need it. Thank the Lord for all those wonderful programs we have in place for us. Yes, I'm ready for summer. Don't like the cold. Blessings, Jeanie<3 In a message dated 1/25/2013 12:55:16 A.M. Eastern Standard Time, ho...@ptd.net writes: Hi MartyGood to see you on line. I am hoping you are okay these days. I just came off of two months of Home Care, but really need to work on building my strength again. I will get there. I think that every day I get a bit back. I just don't ever give up, but then that's me. I thank God for each day I have. It is really cold in PA. It has been below zero at night and not that warm during the dayaround 15 to 20. I think we'll be getting a little snow tomorrow, but that means it will warm up some. I'm ready for Spring. Blessing to you and yours, Millie -- -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
Hi MartyGood to see you on line. I am hoping you are okay these days. I just came off of two months of Home Care, but really need to work on building my strength again. I will get there. I think that every day I get a bit back. I just don't ever give up, but then that's me. I thank God for each day I have. It is really cold in PA. It has been below zero at night and not that warm during the dayaround 15 to 20. I think we'll be getting a little snow tomorrow, but that means it will warm up some. I'm ready for Spring. Blessing to you and yours, Millie -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
Hi Doris-bmt, According to web-md a rare side effect of Gleevec is Retinal Hemorrhage as well as Eye Bleeds. Although I have never been on it, I had a bone marrow transplant almost 23 years ago, I have heard of this happening many times with people taking Gleevec. It usually subsides in a short time with no permement eye damage. What you have here is a trade off. You may have some side effects but your still alive to have these side effects. As long as your getting out of bed every morning and doing what you do then your doing well. You being on Gleevec for the past eleven years proves it. If Gleevec were available when I had CML I would have opted for it rather then having that bone marrow transplant. Not to say that there may be certain people that will need a BMT because it all depends on their circumstances. Even so, I would have still liked to try it... 18's (symbol for life) Marty On Wed, Jan 23, 2013 at 11:17 AM, Dorisbmt wrote: > > I have had eye bleeds but I don't know if gleevec has anything to do with > it. I've been on gleevec since 2002. > > Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. > > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
As other CMLer's have pointed out, yes Gleevec causes eye bleeds. You do need to make your doctor aware that you are having them. And most are no big deal and go away on their own. But they can be severe enough to stop Gleevec and possibly require other medical intervention. It just depends on how bad yours are. If you're in doubt insist on seeing your doctor right away. If they are like the eye bleeds most of us have had just let them know about the event and likely you will just follow up at your your next appointment. Mine were very mild compared to most people's. But that's still one more thing I don't miss about Gleevec. (I'm a month away from 2 years on Tasigna and a year of PCRU.)If your eyes itch, rubbing is not an option. I got relief with a cold washcloth gently dabbed on closed eyes. Patrick --- On Wed, 1/23/13, Dorisbmt wrote: From: Dorisbmt Subject: [CMLHope] Eye bleeds. To: cmlhope@googlegroups.com Date: Wednesday, January 23, 2013, 10:17 AM I have had eye bleeds but I don't know if gleevec has anything to do with it. I've been on gleevec since 2002. Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
I had two eye bleeds while on gleevec. I had rubbed my eye because they were so dry. I had cramps in my fingers and legs also. I'm on sprycel now. No eye bleeds so far. The eye bleeds usually clear up on their own. Good luck. Jeanie Sent from my iPhone On Jan 23, 2013, at 11:31 AM, "C.M. Houtz" wrote: > I had many eye bleeds while on Gleevec. I think I've only had one minor one > since being put on Tasigna. Each time I went to the eye doctor and all was > well. I think it's something you have to have checked, but probably it will > go away in a few days. I noticed that I had more while in air conditioning, > but I do believe it's the dryness of the air that causes a lot of it. I am > just guessing, but hope I've helped and that your eye bleed goes away. Millie > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
I have had numerous eye bleeds over the 4 years I've been on Gleevec. Eye doctor has never found anything wrong. It is a side effect of the medication but not an issue you need to worry about other than it doesn't look very pretty. I use an eye patch if I have a bleed at work. They usually go away within a day or so. Marcie -Original Message- From: C.M. Houtz To: cmlhope Sent: Wed, Jan 23, 2013 11:32 am Subject: Re: [CMLHope] Eye bleeds. I had many eye bleeds while on Gleevec. I think I've only had one minor one since being put on Tasigna. Each time I went to the eye doctor and all was well. I think it's something you have to have checked, but probably it will go away in a few days. I noticed that I had more while in air conditioning, but I do believe it's the dryness of the air that causes a lot of it. I am just guessing, but hope I've helped and that your eye bleed goes away. Millie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds.
I had many eye bleeds while on Gleevec. I think I've only had one minor one since being put on Tasigna. Each time I went to the eye doctor and all was well. I think it's something you have to have checked, but probably it will go away in a few days. I noticed that I had more while in air conditioning, but I do believe it's the dryness of the air that causes a lot of it. I am just guessing, but hope I've helped and that your eye bleed goes away. Millie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye bleeds.
I have had eye bleeds but I don't know if gleevec has anything to do with it. I've been on gleevec since 2002. Sent via the Samsung Galaxy S™ II Skyrocket™, an AT&T 4G LTE smartphone. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
April 19th was the 12th anniversary of the day I entered the STI 571 trial at UCLA, and over the 12 years I've been on treatment with Gleevec, I've had scores of eye bleeds. Sometimes they come in clusters where I'll have several right in a row, and sometimes I go for many months without one. Dr. Charles Sawyers, my doctor and the co-investigator in the STI 571 study at UCLA, Dr. Ron Paquette, my current doctor who was involved with the studies for Sprycel, and my opthalmologist all have said these eye bleeds are benign. Sawyers and Paquette are considered CML experts.These eye bleeds look horrible, but they go away in a few days. Some of mine are small in the corner of my eye, and some have covered the entire white of my eye in deep crimson. (I get a lot of sympathy for those!) Sometimes I can tell I'm getting one because I feel a little pin prick in my eye, and sometimes I can't feel a thing. None of these doctors have said anything about them being dangerous or leading to brain bleeds. This is just the information that I have. Virginia from Claremont, CA -Original Message- From: Marcie To: cmlhope@googlegroups.com Sent: Sun, May 8, 2011 9:38 pm Subject: [CMLHope] Eye Bleeds I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone --[CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
While on Gleevec, I had lots of eye bleeds.two or three a year. I went to my Eye Doctor, who always checked them out. At that time I didn't have any idea that it was from the Gleevec. Mine went away after a week or so, but they scared me at the time. I never did tell my Oncologist, so think that would be a good place to start. On Tasigna now and haven't had a problem with them. Good luck to you. Take care.Millie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
I am not a physician but I guess there are various degrees of eye bleeds. The Whites of my eyes were completely beet red when I experienced this problem. I was the first my hematologist had seen with this problem, in person. I would call my hematologist if i were you. From: sherri swanson To: cmlhope@googlegroups.com Sent: Mon, May 9, 2011 11:49:29 AM Subject: Re: [CMLHope] Eye Bleeds Okay, I have a silly question. Every once in awhile I wake up with my right or left eye in the corner all blood shot. It looks terrible and like I've been in a fight. It does not hurt or itch and usually goes away in a few days. Is this what you are calling eye bleeds? Thanks On Mon, May 9, 2011 at 7:58 AM, Susan Zimmerman wrote: I was on gleevec and had numerous eye bleeds until I actually did have a brain bleed. This is nothing to sneeze at. I was then removed from gleevec and have been off it for 4 years. One year ago I had another stroke much worse, and am thankful to be here. Going against doc's orders to try sprycel until I am out of cellular remission. I pray that never happens. Thankful for every day. Take these eye bleeds seriously! Discuss these two posts regarding brain bleeds with your doctors. >Blessings, >Susan > > > > > >-Original Message- >From: maggy...@bellsouth.net >To: cmlhope >Sent: Mon, May 9, 2011 3:41 am >Subject: Re: [CMLHope] Eye Bleeds > > >I was on Gleevac when one day I woke up with bilateral eye bleeds. I was >immediately removed from the Gleevac. If Gleevac can make your eyes bleed >it's >potentially possible for it to make your brain bleeed - and to cause a >stroke. >I've not been on any medication for CML for over 1.5 years now. This week I >may be restarted on a lower dose of Gleevac per my hematologist. We will see. > > > > From: judy >To: cmlhope@googlegroups.com >Cc: jam_92...@yahoo.com >Sent: Sun, May 8, 2011 11:34:39 PM >Subject: Re: [CMLHope] Eye Bleeds > > >Hello Marcie they scared me also but I'we had about 6 or 8 or them and they >go >right away no need to worry some are bigger than others but I don't think >their a big deal except all the red. Take care JUDY > > > > From: Marcie >To: cmlhope@googlegroups.com >Sent: Mon, May 9, 2011 12:38:35 AM >Subject: [CMLHope] Eye Bleeds > >I've been on Gleevec since March '09, should let Zavie know that I can be his >newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt >but >looks awful. Anyone have any info on what to expect? > >Thanks, dear friends. Even my wonderful doctor says every now and then "go >check >with your group". > >Marcie in Baltimore >Sent from my iPhone > >--[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope-- >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope >-- > >[CMLHope] >A support group of http://cmlhope.com >- > >You received this message because you are subscribed to the Google Groups >"CMLHope" group. >To post to this group, send email to CMLHope@googlegroups.com >To unsubscribe from this group, send email to >cmlhope-unsubscr...@googlegroups.com >For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com --
Re: [CMLHope] Eye Bleeds
Okay, I have a silly question. Every once in awhile I wake up with my right or left eye in the corner all blood shot. It looks terrible and like I've been in a fight. It does not hurt or itch and usually goes away in a few days. Is this what you are calling eye bleeds? Thanks On Mon, May 9, 2011 at 7:58 AM, Susan Zimmerman wrote: > I was on gleevec and had numerous eye bleeds until I actually did have a > brain bleed. This is nothing to sneeze at. I was then removed from gleevec > and have been off it for 4 years. One year ago I had another stroke much > worse, and am thankful to be here. Going against doc's orders to try > sprycel until I am out of cellular remission. I pray that never happens. > Thankful for every day. Take these eye bleeds seriously! Discuss these > two posts regarding brain bleeds with your doctors. > Blessings, > Susan > > > > > -Original Message- > From: maggy...@bellsouth.net > To: cmlhope > Sent: Mon, May 9, 2011 3:41 am > Subject: Re: [CMLHope] Eye Bleeds > > I was on Gleevac when one day I woke up with bilateral eye bleeds. I > was immediately removed from the Gleevac. If Gleevac can make your eyes > bleed it's potentially possible for it to make your brain bleeed - and to > cause a stroke. I've not been on any medication for CML for over 1.5 years > now. This week I may be restarted on a lower dose of Gleevac per my > hematologist. We will see. > > -- > *From:* judy > *To:* cmlhope@googlegroups.com > *Cc:* jam_92...@yahoo.com > *Sent:* Sun, May 8, 2011 11:34:39 PM > *Subject:* Re: [CMLHope] Eye Bleeds > > Hello Marcie they scared me also but I'we had about 6 or 8 or them and > they go right away no need to worry some are bigger than others but I > don't think their a big deal except all the red. Take care JUDY > > ------ > *From:* Marcie > *To:* cmlhope@googlegroups.com > *Sent:* Mon, May 9, 2011 12:38:35 AM > *Subject:* [CMLHope] Eye Bleeds > > I've been on Gleevec since March '09, should let Zavie know that I can be > his newest member of the zero club. But tonight I got an eye bleed. Doesn't > hurt but looks awful. Anyone have any info on what to expect? > > Thanks, dear friends. Even my wonderful doctor says every now and then "go > check with your group". > > Marcie in Baltimore > Sent from my iPhone > > --[CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > > -- > [CMLHope] > A support group of http://cmlhope.com > - > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > For more options, visit this group at > http://groups.google.com/group/CMLHope > -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
I was on gleevec and had numerous eye bleeds until I actually did have a brain bleed. This is nothing to sneeze at. I was then removed from gleevec and have been off it for 4 years. One year ago I had another stroke much worse, and am thankful to be here. Going against doc's orders to try sprycel until I am out of cellular remission. I pray that never happens. Thankful for every day. Take these eye bleeds seriously! Discuss these two posts regarding brain bleeds with your doctors. Blessings, Susan -Original Message- From: maggy...@bellsouth.net To: cmlhope Sent: Mon, May 9, 2011 3:41 am Subject: Re: [CMLHope] Eye Bleeds I was on Gleevac when one day I woke up with bilateral eye bleeds. I was immediately removed from the Gleevac. If Gleevac can make your eyes bleed it's potentially possible for it to make your brain bleeed - and to cause a stroke. I've not been on any medication for CML for over 1.5 years now. This week I may be restarted on a lower dose of Gleevac per my hematologist. We will see. From: judy To: cmlhope@googlegroups.com Cc: jam_92...@yahoo.com Sent: Sun, May 8, 2011 11:34:39 PM Subject: Re: [CMLHope] Eye Bleeds Hello Marcie they scared me also but I'we had about 6 or 8 or them and they go right away no need to worry some are bigger than others but I don't think their a big deal except all the red. Take care JUDY From: Marcie To: cmlhope@googlegroups.com Sent: Mon, May 9, 2011 12:38:35 AM Subject: [CMLHope] Eye Bleeds I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone --[CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
Your blood vessels are very close to the skin in your eye, you may have wiped your eye to hard with a towel after taking a shower or rubbed it hard for some reason. It doesn't take much. greenie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
Give it about 3 to 5 days and it will go away. I get them once in a while. greenie -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
I was on Gleevac when one day I woke up with bilateral eye bleeds. I was immediately removed from the Gleevac. If Gleevac can make your eyes bleed it's potentially possible for it to make your brain bleeed - and to cause a stroke. I've not been on any medication for CML for over 1.5 years now. This week I may be restarted on a lower dose of Gleevac per my hematologist. We will see. From: judy To: cmlhope@googlegroups.com Cc: jam_92...@yahoo.com Sent: Sun, May 8, 2011 11:34:39 PM Subject: Re: [CMLHope] Eye Bleeds Hello Marcie they scared me also but I'we had about 6 or 8 or them and they go right away no need to worry some are bigger than others but I don't think their a big deal except all the red. Take care JUDY From: Marcie To: cmlhope@googlegroups.com Sent: Mon, May 9, 2011 12:38:35 AM Subject: [CMLHope] Eye Bleeds I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone --[CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
When i was on Gleevec I had eye bleed a few times, it comes and stay for a few days. When I change my medicin to Sprycel it´s stoped. My doctor sent me to an eye specialist the first time, and he told me that eye bleed was releted to Gleevec. It´s look horrible sometimes but it diden´t harm me. Keep on fighting. Best regards Michael Hedlund Sweden -Original Message- From: Marcie To: cmlhope@googlegroups.com Date: Mon, 9 May 2011 00:38:35 -0400 Subject: [CMLHope] Eye Bleeds I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye Bleeds
Hello Marcie they scared me also but I'we had about 6 or 8 or them and they go right away no need to worry some are bigger than others but I don't think their a big deal except all the red. Take care JUDY From: Marcie To: cmlhope@googlegroups.com Sent: Mon, May 9, 2011 12:38:35 AM Subject: [CMLHope] Eye Bleeds I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone --[CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye Bleeds
I've been on Gleevec since March '09, should let Zavie know that I can be his newest member of the zero club. But tonight I got an eye bleed. Doesn't hurt but looks awful. Anyone have any info on what to expect? Thanks, dear friends. Even my wonderful doctor says every now and then "go check with your group". Marcie in Baltimore Sent from my iPhone -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds
Great News, Keep on keeping on. Jeanie<3 In a message dated 3/20/2011 10:19:25 A.M. Pacific Daylight Time, maggy...@bellsouth.net writes: I've been off Gleevac for about 1.5 years now, due to eye bleeds. My Philadelphia Chromosone indicator (level) was/is 0.07 up from 6 months ago when it was 0.012. In a month they will recheck and then decide if I need to be on anything. From: Victoria Reiter To: CMLHope@googlegroups.com Sent: Sun, March 20, 2011 9:29:56 AM Subject: [CMLHope] Eye bleeds I've been on Gleevec for eleven years and began to have occasional eye bleeds about six years ago. This lasted for a short time and then stopped. Now I'll have perhaps one eye bleed a year and count myself lucky. I was unaware that a few people were having bleeding in the brain and am not certain if this is from Gleevec or from Tasigna. It's unspoken but true that everyone who takes a new medication is a test subject and that every side effect that can occur does not necessarily show up while a drug is in first and second stage testing. But we have to give kudos to Dr. Druker for having more or less solved our problem by attempting to block the molecular expression of it. His approach is being used on other cancers: I believe there's even a new melanoma drug that uses the same technique. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] eye bleeds and brain bleeds
Dear Susan, First, this is not a stem cell transplant. What it consists of are having a blood draw every morning for the first week, for seven days. I then had to go back in the afternoon as soon as the results were done and then I received two injections of Nupogen, one in each arm. The next morning I would go back and have the usual blood draw then wait until the afternoon and go back and if my white cell count was below 60,000 then I would get the two Nupogen injections. This went on for the first week and the second week was a "rest period" with only getting blood tests on Monday, Wednesday and Friday. This would alternate for six weeks, and since there were three times that my white cell count came close to 60,000 I had to make up the missed six injections over the next three days, for a total of 42 injections. What this did was to stimulate the three different kinds of stem cells in my body by stimulating the white cells to grow like I was having Leukemia but the white cells were being manufactured as mature cells unlike having Leukemia. I did have a lot of bone pain especially in my sternum and pelvis the first week and sometimes as well. Also had some terrible chills and sometimes I had a low grade fever. Since this is considered an experimental procedure insurance did not cover any of it. I had to pay for everything myself, and it was very expensive. To answer your question about type one Diabetes, yes, this doctor had one person that I know of that had type one and it did help him as well. GOD bless you Susan Zimmerman (That is how I write HIS name rather then the usual g-d because this is how I show my respect to HIM) I am traditionally different, but still the same, if you know what I mean... Marty Gartenberg On Mon, Mar 21, 2011 at 11:10 AM, Susan Zimmerman wrote: > Dear Marty, > > Is this stem cell transplant available for type 1 diabetes patients? > > Susan > > > > -Original Message- > From: Martin Gartenberg > To: cmlhope > Sent: Sun, Mar 20, 2011 5:44 pm > Subject: Re: [CMLHope] eye bleeds and brain bleeds > > Dear Susan, > > I am so happy for you being off of Gleevec and doing quite well. I hope > that this goes on for you for many, many years. > > I will pray for your mother-in-law to at least have an easy time of it, and > that her suffering is very little. > > You do know that you are her guardian angel... > > *18's* to you both. > > Marty > > On Sun, Mar 20, 2011 at 6:07 PM, Susan Zimmerman wrote: > >> Dear Marty, >> You've really got a handle on it! And I clear my throat to you, as well! >> Things with mother-in-law are >> getting toward the hospice house decisionshe can't get free of pain. >> Thanks for caring. Yes, G_d is really >> watching over us all, including you! He will go to great lengths to have >> fellowship with us. >> >> You are so right about the practice of medicine. I urge everyone to >> listen to their body, take a leap of faith >> and give yourself a gleevec vacation*if you are in molecular >> remission.* A slight change in your log reduction is no big deal, >> believe me. I've been off the med for four years now, and still functioning >> well with no gleevec. Every >> day I am thankful for each moment. >> >> 18's to you all, (LIFE) >> Susan >> >> >> >> >> -Original Message- >> From: Martin Gartenberg >> To: cmlhope >> Sent: Sat, Mar 19, 2011 6:49 pm >> Subject: Re: [CMLHope] Kidney function >> >> And hi again Susan, >> >> I can understand your concerns about all of these drugs. However it seems >> that you are doing quite well without any of them. Now that is really good >> news. >> >> Yes a diet and eating the right kinds of foods will certainly help with >> diabetes if you are type two. In fact the stem cell doctor would not do the >> therapy unless I lost some weight, so I did. >> >> You also have to remember that medicine is called a practice because that >> is exactly what it is. One thing might not effect someone while it could >> effect someone else. You are correct because you know your body better then >> anyone else. >> >> I am sorry to hear about your mother-in-law. You are a very good person >> for taking care of her when you have your own problems. GOD watches over >> these things and I know that HE is blessing you. >> >> Susan, *18* in the Hebrew language is the symbol for life and it is >> spoken as "CHI". It is pronounced like your clearing your throat. >> >> *18's* to you Susan. >> >> Marty >> >> On Sat, Mar 19, 2011 at 6:33 P
Re: [CMLHope] eye bleeds and brain bleeds
Dear Marty, Is this stem cell transplant available for type 1 diabetes patients? Susan -Original Message- From: Martin Gartenberg To: cmlhope Sent: Sun, Mar 20, 2011 5:44 pm Subject: Re: [CMLHope] eye bleeds and brain bleeds Dear Susan, I am so happy for you being off of Gleevec and doing quite well. I hope that this goes on for you for many, many years. I will pray for your mother-in-law to at least have an easy time of it, and that her suffering is very little. You do know that you are her guardian angel... 18's to you both. Marty On Sun, Mar 20, 2011 at 6:07 PM, Susan Zimmerman wrote: Dear Marty, You've really got a handle on it! And I clear my throat to you, as well! Things with mother-in-law are getting toward the hospice house decisionshe can't get free of pain. Thanks for caring. Yes, G_d is really watching over us all, including you! He will go to great lengths to have fellowship with us. You are so right about the practice of medicine. I urge everyone to listen to their body, take a leap of faith and give yourself a gleevec vacationif you are in molecular remission. A slight change in your log reduction is no big deal, believe me. I've been off the med for four years now, and still functioning well with no gleevec. Every day I am thankful for each moment. 18's to you all, (LIFE) Susan -Original Message- From: Martin Gartenberg To: cmlhope Sent: Sat, Mar 19, 2011 6:49 pm Subject: Re: [CMLHope] Kidney function And hi again Susan, I can understand your concerns about all of these drugs. However it seems that you are doing quite well without any of them. Now that is really good news. Yes a diet and eating the right kinds of foods will certainly help with diabetes if you are type two. In fact the stem cell doctor would not do the therapy unless I lost some weight, so I did. You also have to remember that medicine is called a practice because that is exactly what it is. One thing might not effect someone while it could effect someone else. You are correct because you know your body better then anyone else. I am sorry to hear about your mother-in-law. You are a very good person for taking care of her when you have your own problems. GOD watches over these things and I know that HE is blessing you. Susan, 18 in the Hebrew language is the symbol for life and it is spoken as "CHI". It is pronounced like your clearing your throat. 18's to you Susan. Marty On Sat, Mar 19, 2011 at 6:33 PM, Susan Zimmerman wrote: Hi again Marty, I found a match for a bone marrow transplant, my own sister Sandy. Butthey advised using either gleevec, sprycel, or the third one...I am going against my doc's suggestions to be on sprycel, because of the high risk factor of another brain bleed. I had one dose of tasigna...(can't remember the other name) after going thru the hoops to get in a test group before it was legal. It gave me another bad eye bleed, so I knew it was related to the drugs. So from that I am enjoying no drugs for almost four years, ptl. I see that with this stem cell therapy I would not be a candidate as I am not in molecular remission (thru the BCR/ABL test). I am over 1.0 now on the log of testing with BCR/ABL, and am keeping my fingers crossed that I stay in cellular remission awhile longer. I am so blessed by God that I cannot express how very much He blesses me! Staying in the Word is my greatest help. I understand there is a third generation drug being tested and released soon. That is bosatinib, and I am hoping I can last til that comes out before needing something. Surely that one won't have so many dreadful side effects! Plural effusion with sprycel for so many makes me very leery of it. Actually, perhaps I will never need one! Right now I am taking care of my mother-in-law who is dying of lung cancer, and so all my energies are on that. God knows! I am so thankful you received a healing from the diabetes thru that method. If I will be obedient on eating habits I can get rid of it, too, without mortgaging my house again, lol. I am not on insulin, just pills. It is truly a great testimony to all that going off gleevec after reaching total remission about 9 months after beginning it, that gleevec vacations are very very possible to rid yourself of all side affects for awhile. Each one is different, so go with your own knowledge of your body. Some of these doctors know just a little more than we do about how gleevec and all of them work... What does 18 mean? Susan (Indiana) -Original Message- From: Martin Gartenberg To: cmlhope Sent: Sat, Mar 19, 2011 10:15 am Subject: Re: [CMLHope] Kidney function Hi Susan, I am sorry to hear about your brain bleed and the stroke that you had. Who really knows if it was or wasn't caused by the Gleevec? The thing is tha
Re: [CMLHope] eye bleeds and brain bleeds
Dear Susan, I am so happy for you being off of Gleevec and doing quite well. I hope that this goes on for you for many, many years. I will pray for your mother-in-law to at least have an easy time of it, and that her suffering is very little. You do know that you are her guardian angel... *18's* to you both. Marty On Sun, Mar 20, 2011 at 6:07 PM, Susan Zimmerman wrote: > Dear Marty, > You've really got a handle on it! And I clear my throat to you, as well! > Things with mother-in-law are > getting toward the hospice house decisionshe can't get free of pain. > Thanks for caring. Yes, G_d is really > watching over us all, including you! He will go to great lengths to have > fellowship with us. > > You are so right about the practice of medicine. I urge everyone to > listen to their body, take a leap of faith > and give yourself a gleevec vacation*if you are in molecular > remission.* A slight change in your log reduction is no big deal, > believe me. I've been off the med for four years now, and still functioning > well with no gleevec. Every > day I am thankful for each moment. > > 18's to you all, (LIFE) > Susan > > > > > -Original Message- > From: Martin Gartenberg > To: cmlhope > Sent: Sat, Mar 19, 2011 6:49 pm > Subject: Re: [CMLHope] Kidney function > > And hi again Susan, > > I can understand your concerns about all of these drugs. However it seems > that you are doing quite well without any of them. Now that is really good > news. > > Yes a diet and eating the right kinds of foods will certainly help with > diabetes if you are type two. In fact the stem cell doctor would not do the > therapy unless I lost some weight, so I did. > > You also have to remember that medicine is called a practice because that > is exactly what it is. One thing might not effect someone while it could > effect someone else. You are correct because you know your body better then > anyone else. > > I am sorry to hear about your mother-in-law. You are a very good person for > taking care of her when you have your own problems. GOD watches over these > things and I know that HE is blessing you. > > Susan, *18* in the Hebrew language is the symbol for life and it is spoken > as "CHI". It is pronounced like your clearing your throat. > > *18's* to you Susan. > > Marty > > On Sat, Mar 19, 2011 at 6:33 PM, Susan Zimmerman wrote: > >> Hi again Marty, >> >> I found a match for a bone marrow transplant, my own sister Sandy. >> Butthey advised using either gleevec, sprycel, or the third one...I am >> going against my doc's suggestions to be on sprycel, because of the high >> risk factor of another brain bleed. I had one dose of tasigna...(can't >> remember the other name) after going thru the hoops to get in a test group >> before it was legal. It gave me another bad eye bleed, so I knew it was >> related to the drugs. So from that I am enjoying no drugs for almost four >> years, ptl. I see that with this stem cell therapy I would not be a >> candidate as I am not in molecular remission (thru the BCR/ABL test). I am >> over 1.0 now on the log of testing with BCR/ABL, and am keeping my fingers >> crossed that I stay in cellular remission awhile longer. I am so blessed by >> God that I cannot express how very much He blesses me! Staying in the Word >> is my greatest help. >> >> I understand there is a third generation drug being tested and released >> soon. That is bosatinib, and I am hoping I can last til that comes out >> before needing something. Surely that one won't have so many dreadful side >> effects! Plural effusion with sprycel for so many makes me very leery of >> it. Actually, perhaps I will never need one! Right now I am taking care of >> my mother-in-law who is dying of lung cancer, and so all my energies are on >> that. God knows! >> >> I am so thankful you received a healing from the diabetes thru that >> method. If I will be obedient on eating habits I can get rid of it, too, >> without mortgaging my house again, lol. I am not on insulin, just pills. >> >> It is truly a great testimony to all that going *off* gleevec after >> reaching total remission about 9 months after beginning it, that gleevec >> vacations are very very possible to rid yourself of all side affects for >> awhile. Each one is different, so go with your own knowledge of your body. >> Some of these doctors know just a little more than we do about how gleevec >> and all of them work... >> >> >> What does 18 mean? >> Susan >> (Indiana) >> >> >> -Original Message- >> From: Martin Gartenberg >> To: cmlhope >> Sent: Sat, Mar 19, 2011 10:15 am >> Subject: Re: [CMLHope] Kidney function >> >> Hi Susan, >> >> I am sorry to hear about your brain bleed and the stroke that you had. Who >> really knows if it was or wasn't caused by the Gleevec? The thing is that >> your alive and in cellular remission without any Gleevec. Remarkable! I >> know that there is a guardian angel looking o
Re: [CMLHope] eye bleeds and brain bleeds
Dear Marty, You've really got a handle on it! And I clear my throat to you, as well! Things with mother-in-law are getting toward the hospice house decisionshe can't get free of pain. Thanks for caring. Yes, G_d is really watching over us all, including you! He will go to great lengths to have fellowship with us. You are so right about the practice of medicine. I urge everyone to listen to their body, take a leap of faith and give yourself a gleevec vacationif you are in molecular remission. A slight change in your log reduction is no big deal, believe me. I've been off the med for four years now, and still functioning well with no gleevec. Every day I am thankful for each moment. 18's to you all, (LIFE) Susan -Original Message- From: Martin Gartenberg To: cmlhope Sent: Sat, Mar 19, 2011 6:49 pm Subject: Re: [CMLHope] Kidney function And hi again Susan, I can understand your concerns about all of these drugs. However it seems that you are doing quite well without any of them. Now that is really good news. Yes a diet and eating the right kinds of foods will certainly help with diabetes if you are type two. In fact the stem cell doctor would not do the therapy unless I lost some weight, so I did. You also have to remember that medicine is called a practice because that is exactly what it is. One thing might not effect someone while it could effect someone else. You are correct because you know your body better then anyone else. I am sorry to hear about your mother-in-law. You are a very good person for taking care of her when you have your own problems. GOD watches over these things and I know that HE is blessing you. Susan, 18 in the Hebrew language is the symbol for life and it is spoken as "CHI". It is pronounced like your clearing your throat. 18's to you Susan. Marty On Sat, Mar 19, 2011 at 6:33 PM, Susan Zimmerman wrote: Hi again Marty, I found a match for a bone marrow transplant, my own sister Sandy. Butthey advised using either gleevec, sprycel, or the third one...I am going against my doc's suggestions to be on sprycel, because of the high risk factor of another brain bleed. I had one dose of tasigna...(can't remember the other name) after going thru the hoops to get in a test group before it was legal. It gave me another bad eye bleed, so I knew it was related to the drugs. So from that I am enjoying no drugs for almost four years, ptl. I see that with this stem cell therapy I would not be a candidate as I am not in molecular remission (thru the BCR/ABL test). I am over 1.0 now on the log of testing with BCR/ABL, and am keeping my fingers crossed that I stay in cellular remission awhile longer. I am so blessed by God that I cannot express how very much He blesses me! Staying in the Word is my greatest help. I understand there is a third generation drug being tested and released soon. That is bosatinib, and I am hoping I can last til that comes out before needing something. Surely that one won't have so many dreadful side effects! Plural effusion with sprycel for so many makes me very leery of it. Actually, perhaps I will never need one! Right now I am taking care of my mother-in-law who is dying of lung cancer, and so all my energies are on that. God knows! I am so thankful you received a healing from the diabetes thru that method. If I will be obedient on eating habits I can get rid of it, too, without mortgaging my house again, lol. I am not on insulin, just pills. It is truly a great testimony to all that going off gleevec after reaching total remission about 9 months after beginning it, that gleevec vacations are very very possible to rid yourself of all side affects for awhile. Each one is different, so go with your own knowledge of your body. Some of these doctors know just a little more than we do about how gleevec and all of them work... What does 18 mean? Susan (Indiana) -Original Message- From: Martin Gartenberg To: cmlhope Sent: Sat, Mar 19, 2011 10:15 am Subject: Re: [CMLHope] Kidney function Hi Susan, I am sorry to hear about your brain bleed and the stroke that you had. Who really knows if it was or wasn't caused by the Gleevec? The thing is that your alive and in cellular remission without any Gleevec. Remarkable! I know that there is a guardian angel looking over you. As far as the stem cell therapy goes, it does work for diabetes but since it is not yet approved I had to pay out of pocket for it. It was very expensive and I had to get a second mortgage on my home, but it was worth it. Before I was to start it I had to be in ABL-BCR and I was. I wonder if it could also help with CML? I couldn't even venture a guess but the way I see it is that why would I first have to be tested for ABL-BCR, and I asked my stem cell doctor. He told me that if there were any active cancer still lurking around then the stem cell th
Re: [CMLHope] Eye bleeds
I've been off Gleevac for about 1.5 years now, due to eye bleeds. My Philadelphia Chromosone indicator (level) was/is 0.07 up from 6 months ago when it was 0.012. In a month they will recheck and then decide if I need to be on anything. From: Victoria Reiter To: CMLHope@googlegroups.com Sent: Sun, March 20, 2011 9:29:56 AM Subject: [CMLHope] Eye bleeds I've been on Gleevec for eleven years and began to have occasional eye bleeds about six years ago. This lasted for a short time and then stopped. Now I'll have perhaps one eye bleed a year and count myself lucky. I was unaware that a few people were having bleeding in the brain and am not certain if this is from Gleevec or from Tasigna. It's unspoken but true that everyone who takes a new medication is a test subject and that every side effect that can occur does not necessarily show up while a drug is in first and second stage testing. But we have to give kudos to Dr. Druker for having more or less solved our problem by attempting to block the molecular expression of it. His approach is being used on other cancers: I believe there's even a new melanoma drug that uses the same technique. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye bleeds
I've been on Gleevec for eleven years and began to have occasional eye bleeds about six years ago. This lasted for a short time and then stopped. Now I'll have perhaps one eye bleed a year and count myself lucky. I was unaware that a few people were having bleeding in the brain and am not certain if this is from Gleevec or from Tasigna. It's unspoken but true that everyone who takes a new medication is a test subject and that every side effect that can occur does not necessarily show up while a drug is in first and second stage testing. But we have to give kudos to Dr. Druker for having more or less solved our problem by attempting to block the molecular expression of it. His approach is being used on other cancers: I believe there's even a new melanoma drug that uses the same technique. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] EYE BLEEDS
Eye bleeds. When we lived in a condo that had soft water I would get eye bleeds. I think it was because I would try and remove the water from my eye lids. Soft water makes the skin very slippery and I would press hard to remove the water. Something to think about. Greenie In a message dated 9/15/2010 5:23:49 P.M. Central Daylight Time, vgar...@doglover.com writes: I have had eye bleeds for years. For me they seem to come in clusters. One time I had 4-5 in one month. I remember one time I had two in two days. Right now I can't remember how long it's been since I've had one--a long time for sure. Maybe a year or more. There doesn't seem to be any rhyme or reason to it. My ophthalmologist says not to worry. I've had some really good deep solid red ones that elicit lots of sympathy from lots of people! -Original Message- From: Sandy Byrd To: CMLHope@googlegroups.com Sent: Wed, Sep 15, 2010 11:19 aco Subject: [CMLHope] EYE BLEEDS I am having more frequent eye bleeds now, and would like to know how many of you have had this side effect and how often you have them. I am on 400 mg Gleevec a day and have been in remission October, 2009. Thank you in advance for any info you can give me. Take care, ya'll, Sandy Byrd -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [CMLHope] EYE BLEEDS
I've 2 in 5 years. _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of ANGELYN ESDERS Sent: September-15-10 8:00 PM To: cmlhope@googlegroups.com Subject: Re: [CMLHope] EYE BLEEDS I've been on 300 mg Gleevec since Jan. 2001 and have never yet had an eye bleed. < Angie in Canada -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] EYE BLEEDS
I've been on 300 mg Gleevec since Jan. 2001 and have never yet had an eye bleed. < Angie in Canada -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] EYE BLEEDS
Hi Sandy, I've been on 400 mg of Gleevic since it was approved in 2001 and have had many eye bleeds. Once it was the entire white part of my right eye and that was the only one that I new was Coming I felt a stabbing pain in that eye. They come and they go away, some times it takes several days to dissipate, others they are gone the next day! I wish you well! Jim Rodeghier --- On Wed, 9/15/10, Sandy Byrd wrote: From: Sandy Byrd Subject: [CMLHope] EYE BLEEDS To: CMLHope@googlegroups.com Date: Wednesday, September 15, 2010, 1:19 PM Dear Warriors I am having more frequent eye bleeds now, and would like to know how many of you have had this side effect and how often you have them. I am on 400 mg Gleevec a day and have been in remission October, 2009. Thank you in advance for any info you can give me. Take care, ya'll, Sandy Byrd -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope<>
Re: [CMLHope] EYE BLEEDS
HI Sandy, I have had two eye bleeds while on Gleevec and one on Tasigna. I am grateful they are not too badI did go to the eye doc and she reassured me that no damage was donegood luck to you..Beth -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] EYE BLEEDS
Hi, When I was on Gleevec I had lots of eye bleeds and now that I'm on Tasigna, I don't have them. My doctors were concerned and I had my eye doctor check them all of the time. I was on as much as 800 mg. of Gleevec, so I did have lots, but not as many as you had, Virginia. I'm thankful I'm not getting them any longer. These side effects are not fun, but, as I told my husband a few minutes ago, what are our choices? We put up with whatever they are, and try to handle them. Not much else we can do. I feel lucky that I haven't had more on Tasigna...very fortunate. You all take care...Millie - Original Message - From: Virginia Garner To: cmlhope@googlegroups.com Sent: Wednesday, September 15, 2010 6:23 PM Subject: Re: [CMLHope] EYE BLEEDS I have had eye bleeds for years. For me they seem to come in clusters. One time I had 4-5 in one month. I remember one time I had two in two days. Right now I can't remember how long it's been since I've had one--a long time for sure. Maybe a year or more. There doesn't seem to be any rhyme or reason to it. My ophthalmologist says not to worry. I've had some really good deep solid red ones that elicit lots of sympathy from lots of people! -Original Message- From: Sandy Byrd To: CMLHope@googlegroups.com Sent: Wed, Sep 15, 2010 11:19 am Subject: [CMLHope] EYE BLEEDS I am having more frequent eye bleeds now, and would like to know how many of you have had this side effect and how often you have them. I am on 400 mg Gleevec a day and have been in remission October, 2009. Thank you in advance for any info you can give me. Take care, ya'll, Sandy Byrd -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] EYE BLEEDS
I have had eye bleeds for years. For me they seem to come in clusters. One time I had 4-5 in one month. I remember one time I had two in two days. Right now I can't remember how long it's been since I've had one--a long time for sure. Maybe a year or more. There doesn't seem to be any rhyme or reason to it. My ophthalmologist says not to worry. I've had some really good deep solid red ones that elicit lots of sympathy from lots of people! -Original Message- From: Sandy Byrd To: CMLHope@googlegroups.com Sent: Wed, Sep 15, 2010 11:19 am Subject: [CMLHope] EYE BLEEDS Dear Warriors I am having more frequent eye bleeds now, and would like to know how many of you have had this side effect and how often you have them. I am on 400 mg Gleevec a day and have been in remission October, 2009. Thank you in advance for any info you can give me. Take care, ya'll, Sandy Byrd -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] EYE BLEEDS
Dear Warriors I am having more frequent eye bleeds now, and would like to know how many of you have had this side effect and how often you have them. I am on 400 mg Gleevec a day and have been in remission October, 2009. Thank you in advance for any info you can give me. Take care, ya'll, Sandy Byrd -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope<>
Re: [Possible Spam][CMLHope] Eye bleeds
I take mine with lots of water with food. Have had no problems. All the best on your journey. My bothersome side effect is Peripheral Neuropathy. So far it hasn't affected my balance and it is not painful...so we will hope for the best. Here is to a great new year for all of us on this CML car! Tom in Ky In a message dated 12/25/2009 8:59:02 A.M. Eastern Standard Time, icandoall...@aol.com writes: Yes Sprycell is much easier than the other drugs to take, but I still take it with food although you don't have to, and my doctor told me it is a lot different than the other cml drugs.Good luck and let us know how you are doing. Jeanie<3 In a message dated 12/13/2009 12:35:22 P.M. Pacific Standard Time, maggy...@bellsouth.net writes: Spyrecel easy to take with or without food? that's a huge plus. I couldn't seem to eat enough befoer taking Gleevac, horrible nausea. -- [CMLHope] A support group of _http://cmlhope.com_ (http://cmlhope.com/) - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [Possible Spam][CMLHope] Eye bleeds
Yes Sprycell is much easier than the other drugs to take, but I still take it with food although you don't have to, and my doctor told me it is a lot different than the other cml drugs.Good luck and let us know how you are doing. Jeanie<3 In a message dated 12/13/2009 12:35:22 P.M. Pacific Standard Time, maggy...@bellsouth.net writes: Spyrecel easy to take with or without food? that's a huge plus. I couldn't seem to eat enough befoer taking Gleevac, horrible nausea. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [Possible Spam][CMLHope] Eye bleeds
Spyrecel easy to take with or without food? that's a huge plus. I couldn't seem to eat enough befoer taking Gleevac, horrible nausea. --- On Sat, 12/12/09, icandoall...@aol.com wrote: From: icandoall...@aol.com Subject: Re: [Possible Spam][CMLHope] Eye bleeds To: cmlhope@googlegroups.com Date: Saturday, December 12, 2009, 11:22 AM Good luck on your journey into the world of Sprycell-it has a lot less side effects than Gleevec, at least for me it does. it's easy to take-with our without food. Let us know how you feel on it-I do have headaches and nasal problems. Blessings, Jeanie<3 In a message dated 12/10/2009 11:05:27 A.M. Pacific Standard Time, maggy...@bellsouth.net writes: wow, no meds for 2.5 years after gleevac stopped. I had a fantastic response to the Gleevac, immediately knocked my WBC from 128,000 down to 4.7 thousand now. Been off Gleevac for 2 weeks and he's going to start me on Spyrecel which I have to pick up at the cancer center, not the pharmacy. He said he didn't understand why. Anyway, my last couple BCR-ABL was 0.000. Gleevac level was 1500, normal is anything above 1500 per hematologist but due to eye bleeds (bilateral) he said no more Gleevac. Best of luck to you and may you continue to remain in cytogenic remission. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [Possible Spam][CMLHope] Eye bleeds
Good luck on your journey into the world of Sprycell-it has a lot less side effects than Gleevec, at least for me it does. it's easy to take-with our without food. Let us know how you feel on it-I do have headaches and nasal problems. Blessings, Jeanie<3 In a message dated 12/10/2009 11:05:27 A.M. Pacific Standard Time, maggy...@bellsouth.net writes: wow, no meds for 2.5 years after gleevac stopped.I had a fantastic response to the Gleevac, immediately knocked my WBC from 128,000 down to 4.7 thousand now. Been off Gleevac for 2 weeks and he's going to start me on Spyrecel which I have to pick up at the cancer center, not the pharmacy. He said he didn't understand why. Anyway, my last couple BCR-ABL was 0.000. Gleevac level was 1500, normal is anything above 1500 per hematologist but due to eye bleeds (bilateral) he said no more Gleevac. Best of luck to you and may you continue to remain in cytogenic remission. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
Re: [CMLHope] Eye bleeds and no gleevec
Hi Susan, I go to Moffitt also-see Dr Balducci-I really like him. I am on 100 mgs of Sprycell and my blood is already back to normal. Good luck, Jeanie<3 In a message dated 12/10/2009 2:23:32 P.M. Pacific Standard Time, rszim0...@aol.com writes: For Tony, yes my counts are slowly rising, have about 40% leukemic cells in my blood now but still in cytogenetic remission. I try to go as natural as possible with eating and supplements and also have a biofeedback machine called a SCIO machine which treats me weekly for leukemia. I think that has helped keep the counts down a lot longer than what the doctor predicted. He said no more than six months and I would be out of control.hahahaha proved him wrong. I treasure every day with no medicine, but am encouraged about sprycel having fewer side effects. They do a fish test every 2 months now on me. Last July I showed about 27% leukemic cells, and now it's 40%. I am keeping Dr. Javier Panilla in my back pocket from Tampa's Moffitt Center. He is the greatest, but am seeing someone locally in Orlando now while I'm off medicine. Everyone have a wonderful, lovely Christmas! God bless you and keep on fighting! Susan Zimmerman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye bleeds and no gleevec
For Tony, yes my counts are slowly rising, have about 40% leukemic cells in my blood now but still in cytogenetic remission. I try to go as natural as possible with eating and supplements and also have a biofeedback machine called a SCIO machine which treats me weekly for leukemia. I think that has helped keep the counts down a lot longer than what the doctor predicted. He said no more than six months and I would be out of control.hahahaha proved him wrong. I treasure every day with no medicine, but am encouraged about sprycel having fewer side effects. They do a fish test every 2 months now on me. Last July I showed about 27% leukemic cells, and now it's 40%. I am keeping Dr. Javier Panilla in my back pocket from Tampa's Moffitt Center. He is the greatest, but am seeing someone locally in Orlando now while I'm off medicine. Everyone have a wonderful, lovely Christmas! God bless you and keep on fighting! Susan Zimmerman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [Possible Spam][CMLHope] Eye bleeds
wow, no meds for 2.5 years after gleevac stopped. I had a fantastic response to the Gleevac, immediately knocked my WBC from 128,000 down to 4.7 thousand now. Been off Gleevac for 2 weeks and he's going to start me on Spyrecel which I have to pick up at the cancer center, not the pharmacy. He said he didn't understand why. Anyway, my last couple BCR-ABL was 0.000. Gleevac level was 1500, normal is anything above 1500 per hematologist but due to eye bleeds (bilateral) he said no more Gleevac. Best of luck to you and may you continue to remain in cytogenic remission. --- On Wed, 12/9/09, Tony Lanoue wrote: From: Tony Lanoue Subject: RE: [Possible Spam][CMLHope] Eye bleeds To: cmlhope@googlegroups.com Date: Wednesday, December 9, 2009, 10:39 PM 2 1/2 years on nothing are your counts stable or are they slowly rising, because maybe the Gleevec did cure you, it has in some.Please keep us posted. Tony From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of rszim0...@aol.com Sent: December-09-09 8:49 PM To: CMLHope@googlegroups.com Subject: [Possible Spam][CMLHope] Eye bleeds Thanks for the post, Maggie May regarding eye bleeds. I had 2 1/2 yrs on gleevec after diagnosis on Feb 14, 2005. Then a brain bleed with many eye bleeds beforehand caused me to stop. I have been on nothing for 2 1/2 more years, still in cytogenetic remission, but soon will have to go back to something unless God intervenes, which is entirely possible. We are choosing sprycel when the time comes. Let me know how it goes for you! Susan Zimmerman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
RE: [Possible Spam][CMLHope] Eye bleeds
2 1/2 years on nothing are your counts stable or are they slowly rising, because maybe the Gleevec did cure you, it has in some.Please keep us posted. Tony _ From: cmlhope@googlegroups.com [mailto:cmlh...@googlegroups.com] On Behalf Of rszim0...@aol.com Sent: December-09-09 8:49 PM To: CMLHope@googlegroups.com Subject: [Possible Spam][CMLHope] Eye bleeds Thanks for the post, Maggie May regarding eye bleeds. I had 2 1/2 yrs on gleevec after diagnosis on Feb 14, 2005. Then a brain bleed with many eye bleeds beforehand caused me to stop. I have been on nothing for 2 1/2 more years, still in cytogenetic remission, but soon will have to go back to something unless God intervenes, which is entirely possible. We are choosing sprycel when the time comes. Let me know how it goes for you! Susan Zimmerman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye bleeds
Thanks for the post, Maggie May regarding eye bleeds. I had 2 1/2 yrs on gleevec after diagnosis on Feb 14, 2005. Then a brain bleed with many eye bleeds beforehand caused me to stop. I have been on nothing for 2 1/2 more years, still in cytogenetic remission, but soon will have to go back to something unless God intervenes, which is entirely possible. We are choosing sprycel when the time comes. Let me know how it goes for you! Susan Zimmerman -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
[CMLHope] Eye bleeds
Dear Gay, Thank you for the tip on bilberry extractI will get on it right away! Susan --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] eye bleeds
Yes, eyebleeds caused by Gleevec, listed as one of the side effects. Not serious but very scary. Blessings Jeanie<3 In a message dated 6/5/2009 7:36:50 P.M. Eastern Daylight Time, sheila.a.wat...@gmail.com writes: Hi Susie Q, Interesting we go by the same here...:) :) Yes to the eye bleeds.had it happen twice in the same eye with a matter of three weeks. The second time was horrible and went to the eye doctor but he said it was nothing serious and would clear up on it's own. I happen to see the oncologist/hematologist at the same time and she told me that if it happend again that soon, to call and they would set me up with one of their ophthalmologist that a blood vessel might need to be cartorized. (not sure about the spelling). But I've had no more problems like that in the five & half years I've been on Gleevec, but it is a side effect according to the paperwork from Novartis. My eye doctor put it in my file:) My eye doctor says normally people have eye bleeds because of stress, heavy lifting, or high blood pressureof which none of those pertained to me at that time, so I showed him the list of side effects and he included them in my records. Keep looking up, Suzieq **We found the real ‘Hotel California’ and the ‘Seinfeld’ diner. What will you find? Explore WhereItsAt.com. (http://www.whereitsat.com/#/music/all-spots/355/47.796964/-66.374711/2/Youve-Found-Where-Its-At?ncid=eml cntnew0007) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] eye bleeds
Hi Susie Q, yes I've had the eyebleeds. Actually just one but it scared me. It cleared up right away and didn't hurt at all. Do you mean your platelets are high. Blessings, Jeanie<3 There is Moffit Cancer Center in Tampa and Orlando has a cancer center also. Good luck, In a message dated 6/4/2009 5:25:40 P.M. Eastern Daylight Time, rszim0...@aol.com writes: I remember them fondly..even though I'm off gleevec now due to a brain bleed, when I did have the spasms the remedy is quinine, either pills or water, but it works!! Also keep up with the calcium intake, it helps when you can't find quinine. Anyone else ever have any eye bleeds or brain bleed from gleevec? It's my platelets, and I must find an excellent hematologist in the Central Florida area. Anyone know of any? The regular onc/hematologists do not know enough, I need a specialist. Thanks, warriors! Susie Q **We found the real ‘Hotel California’ and the ‘Seinfeld’ diner. What will you find? Explore WhereItsAt.com. (http://www.whereitsat.com/#/music/all-spots/355/47.796964/-66.374711/2/Youve-Found-Where-Its-At?ncid=eml cntnew0007) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Eye Bleeds
Hello everyone, I am having a terrible time with eyebleeds. The white of my right eye is covered in blood. It looks frightening and is very embarrassing! Is anyone else having this problem? I am on 200 mg of Gleevec and doing very well:) My best to everyone. Penny --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
