Has anyone experienced itchy skin while using Sprycel? What did you use that was effective in treating? Did the itching get better or worse (or stay the same) over time? Thank you very much for any insights.
To: [email protected] From: [email protected] Subject: [CMLHope] Digest for [email protected] - 8 Messages in 2 Topics Date: Sun, 18 Dec 2011 10:13:33 +0000 Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics sprycel dosage and plural effusion [3 Updates] Recent Doctor's visit [5 Updates] sprycel dosage and plural effusion "[email protected]" <[email protected]> Dec 16 02:08PM -0800 I have been on only 20mg of sprycel bid for at least 4 years now. I show a small amount of plural effusion but it doesn't bother me and dr exrays every 3 months and always there is no change. This is a miracle drug even at this small dosage the fish test shows cml undectable almost every time they do it which is every three-four months. [email protected] Dec 17 09:54AM -0500 Jkuptz....thanks for the input. I am incouraged that some can do well at a lower dose. Have you gotten PCR tests done as well? What do they show? Did you get Pericardial Effusion too? Tom in KY In a message dated 12/17/2011 8:10:18 A.M. Eastern Standard Time, [email protected] writes: I have been on only 20mg of sprycel bid for at least 4 years now. I show a small amount of plural effusion but it doesn't bother me and dr exrays every 3 months and always there is no change. This is a miracle drug even at this small dosage the fish test shows cml undectable almost every time they do it which is every three-four months. -- [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 [email protected] Dec 18 01:02AM -0500 20 mgs. BID is twice a day..do you split the dose morning and evening, or take one dose of 40? Just curious because the half life of sprycel is less than 5 hours. My PCR was <.0002 and has remained there for the last year with one blip..so I have decided..I am going to try 40mgs ( instead of 50) and see if I have less side effects and it holds me with the same PCR..I will do PCR in a month..as opposed to three months..start out with PCR at closer intervals until I am sure it's holding me.... Least dose that works ....keeping my fingers crossed for all of us!!! Beth Recent Doctor's visit [email protected] Dec 17 10:06AM -0500 Thx...will do! You have been most helpful..thanks! T In a message dated 12/16/2011 11:57:41 P.M. Eastern Standard Time, [email protected] writes: If you have shortness of breath and a full chest then you may be showing signs of Pah. Demand an echocardiogram and a chest X-ray immediately.. On Dec 16, 2011 6:06 PM, <[email protected]_ (mailto:[email protected]) > wrote: Also Tom, 50 mgs a day with a diuretic to keep swelling issues at a distance if you are prone to the swelling side effects works well for many. I had shortness of breath and a feeling of fullness in the chest...Before it became problematic.I went on furosamide..and that reolved the swelling. Good luck and keep me posted! Beth -- [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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) 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 [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_ (http://groups.google.com/group/CMLHope) [email protected] Dec 17 10:17AM -0500 Beth..thanks for your helpful information! If I remember correctly, you have connections in the Ft Myers/Sanibel area. Where did you go for cancer treatment, etc. I need to establish an Oncologist there since I will be in the middle of trying to figure out the right dose of Sprycel while fighting Pleural Effusion. Do you have a good clinic/Dr reference? We go to Sanibel for ~4 months each winter...can't wait to get in the warm sunshine. Tom in KY [email protected] Dec 17 04:39PM -0500 Tom, if you come to South Fort Myers area drop me a note. I live less then 5 min. from Sanibel. Or anyone for that matter. Across from Ruby Tuesday's. on Summerlin. greenie In a message dated 12/17/2011 10:18:06 A.M. Eastern Standard Time, [email protected] writes: Beth..thanks for your helpful information! If I remember correctly, you have connections in the Ft Myers/Sanibel area. Where did you go for cancer treatment, etc. I need to establish an Oncologist there since I will be in the middle of trying to figure out the right dose of Sprycel while fighting Pleural Effusion. Do you have a good clinic/Dr reference? We go to Sanibel for ~4 months each winter...can't wait to get in the warm sunshine. Tom in KY -- [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_ (http://groups.google.com/group/CMLHope) Suzieq <[email protected]> Dec 17 05:12PM -0800 Marty: Thank you for all your kind words..........& I am very thankful for each & every day that I wake up and put my feet on the floor! Yes, there are some really awful days, but, they have become a few less as the years roll by since being diagnosed. I've learned to "cope" as I am sure you have learned to do as well. My goal is to try and be a blessing to somebody each day if possible. That's all I ask for........ Now you have a blessed day, Suzieq [email protected] Dec 18 12:55AM -0500 Thanks for the generous offer to all of us Greenie....Tom, since I haven't been to Sanibel since being diagnosed..I don't know of specific doctors, but Health Park is a huge complex that I imagine is a good place to start...From what people write here, many poeople travel to Moffit to see oncologists..but a local hospital for XRays, echo cardiogram, EKG's, routine blood work etc.. makes sense.....If you have PE, you really do feel it... I went to Sanibel for 28 years..once a year in January....I have lost both my parenst in the last few years, my mom this past /August. after 9 months on Hospice. Her memorial was full of pictures of the beaches of Sanibel, shelling, Jerry's bird sanctuary, Ding Darling, CROW, Bailey's track, walking my two miles up to the light house watching the sun rise, and two miles back before breakfast, wathcing the pelican's dive, and the dolphin feed along the shore......Sitting outside the Mucky Duck, New Years at many different places, alligators sunning on the golf course, ...the Timbers shrimp, Ellington's piano man, The Green Flash, and a thousand other memories...I hope to get back to my home away from home soon..and when I do..I hope to meet up with you, and Greenie..and meet other's who walk the same path as I. I may try to get down towards the end of January...or February... until then..be well..and I will think of you guys fondly...say hello to the beach for me.. You received this message because you are subscribed to the Google Group cmlhope. You can post via email. To unsubscribe from this group, send an empty message. For more options, visit this group. -- [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 -- [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
