Hi Maggie and welcome to our wonderful group of CML Warriors, I have been battling CML for 10 years come the first of Jan. I started on Gleevec, and a lot of my hair fell out the first year. I was at a spa one year and had a treatment and was in the dressing room drying and brushing my hair. A big old blob of hair came out with the brushing and I was so embarrassed. I just hoped that no one was looking. My daughter was ready to buy me a wig, but then it quit falling our as much. I wear my hair long and braid it to give it body. Your hair will grow back more than likely. Just take good care of it. I am blond so I never had many eyebrows, they were so light. My eyelashes were always thin but I still have some. I started getting ingrown eyelashes on my left bottom eyelid. These are terrible and I have to keep them plucked out monthly. Gleevec quit working for me and I went on Tasigna but it quit working in few months. I then went on Sprycel in 2009 and have been on it ever since. It put me in full remission, and most of the side effects have gone away. I take 100 mgs daily also. I also had the high platelet count when first dx and took the Hydrea for a while. I hope this helps; keep a good check on your blood counts and good luck. If you need to know anything about Sprycel just let me know. Greenie thanks for the answer to the eyelid surgery. I need my left eye done so let me know how it comes out. Also buy the cranberry juice that is pure juice and not the cocktail type. It is tart but when you add it to that much water it tones it down. And cucumbers give me a fit also; I just burp them after eating them, but the cucumber water doesn't seem to bother me. Good luck everyone and happy Sat. Jeanie<3 In a message dated 11/13/2013 4:55:56 P.M. Eastern Standard Time, [email protected] writes:
Hi. My name is Maggie and I am new to this group. I was diagnosed in August 2013 with CML. I was very sick initially as I don't have a spleen, so my blood work was never normal (apparently, abnormal blood work is how most people find out they have CML). I sought medical attention when I became symptomatic with a platelet count of 2 million. I was on very high dose Hydrea for 10 days, which prompted a 2 week hospitalization for neutropenia. During this hospitalization, I began losing my hair. The doctors blamed it on the high dose hydrea, but it's been over two months since I took my last dose and my hair is still falling out. I am taking 100 mg of Sprycel once daily and I've read that Sprycel can cause hair loss. My hair was actively falling out from the Hydrea when I started the Sprycel. I've also met another patient who said she was losing a lot of hair on Sprycel and she was switching to Tasigna after 5 months on Sprycel. Can anybody tell me if they've experienced this and if so, did your hair continue to fall out? Or willl it slow over time as the body adjusts to the medication? I initially had some weird acne and very dry skin when I first started the Sprycel, but this has faded. Other than the hair loss, I'm tolerating this medication very well and my response is very good. My doctor is thrilled. I hate to ask to switch therapies, but my hair looks really bad and it's so depressing to see hair all over my house and huge balls of it in the drain when I wash it. I've been suffering from signifcant hair loss for three months now. It's just not letting up. I look forward to hearing from the group. Maggie Philadelphia, PA -- -- [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 [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
