Hi Beth, I am on Sprycel and it was the only drug that put me in PCRU. I battled with Gleevec for almost 5 years and then on Tasi for a few months. I was on 100 mgs daily and my onc didn't want me to cut down but I took it upon myself to cut down to 50 mgs daily. I haven't had the muscle problem yet, but feel it could be lurking there close by. Here's what I do nightly; get some organic castor oil and massage you feet and legs with the muscle area nightly. Do this twice a day if you can. Do it right before you turn in for the night. Of course eat well, and eat yogurt daily. If you are low on calcium get some good organic calcium in a liquid form, the one that isn't constipating and take a small dose daily along with some magnesium, Get a little sun on your long bones daily if you can. Walk if you can. Walking will help the headaches also; I suffer from them too and Sprycel makes them worse. Have you tried Tamadol for pain. I take it daily and it helps so I don't have to take any of the nsaids which we aren't suppose to take. It's a pain pill that you take before the pain begins. It can cause mild itching. Thanks for you input on the new drug. I thought that was the one that didn't have that many side effects. What was your toxicity to Sprycel? Blessing Beth, Jeanie<3 In a message dated 4/19/2013 1:28:51 P.M. Eastern Daylight Time, [email protected] writes:
Dear Skip, Marty, Millie, and all those warriors who are struggling right now. I want to pass along a great big hug filled with hope, and light, and healing and positive energy. We need each other during the rough times and I am so glad we have one another. I too have been struggling mightily, but find the one thing that helps, that I keep on working on, is trusting in, believing in, knowing that we can live and love well inspite of and perhaps in some cases because of our illness and how it informs our lives. Isolation and fear are powerful tools that push against us. Community and holding hope and faith for ourselves, our bodies and our spirits, here, united together, will serve and guide us well. I read every day and think of all my fellow warriors out there, those who write, and those who read, and send a prayer to all for peace of mind body and spirit. I tried bosutinib and had horrible side effects at a moderate dose, muscle rigidity all over the body, elevated cpk, emotional distress... after 8 weeks, the BCR showed it had not done anything for the cancer, the cancer had actually grown threw it and I lost two logs. So now back on sprycel at 50 and working on getting back into remission. As I had to go off sprycel in December because of toxicity, it's a scary time. But I remain positive and am researching alternative and complementary options to aid with the toxiicity. If anyone has any suggestions about muscle spasticity, please let me know. I can handle the rashes, migraines, muscle wasting/fatigue/ weakness, But this one is new, ongoing and the greatest challenge yet. thanks for yoru help. Beth -----Original Message----- From: gene and guy Larcher <[email protected]> To: cmlhope <[email protected]> Sent: Fri, Apr 19, 2013 10:49 am Subject: [CMLHope] Skip Duffie Dear Skip: So good to hear from you after quite some time. Very sorry to hear you have been so poorly but the good news is that you are getting better. You, along with Marty, have given tremendous hope to the rest of us and shown how to bear long illness with good spirits. Dear old warrior - we wish you the very best and hope to hear much more from you in the future. Guy -- -- [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 --- 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]_ (mailto:[email protected]) . For more options, visit https://groups.google.com/groups/opt_out. -- -- [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.
