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, [email protected] 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 <[email protected]> To: cmlhope <[email protected]> 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, [email protected]_ (mailto:[email protected]) 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, [email protected]_ (mailto:[email protected]) 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, [email protected]_ (mailto:[email protected]) 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 <[email protected]_ (mailto:[email protected]) > wrote: From: Penny <[email protected]_ (mailto:[email protected]) > Subject: Re: [CMLHope] Tasigna To: [email protected]_ (mailto:[email protected]) 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 <[email protected]> To: cmlhope <[email protected]> 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 <[email protected]> To: CMLHope <[email protected]> Sent: Monday, October 31, 2011 8:24 PM Subject: [CMLHope] Tasigna Marty...tweet, tweet? Ha ha ha!! You are so funny!! Anyway....My 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 [email protected] 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. 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