Dear Jeanie,
Hope you are feeling better...and staying positive! Sorry it took so long for me to write back to you and everyone. I got really sick....virus that morphed into a bacterial infection...it was scary...103 fever for close to a week. I am at week five, and finally feel about 80 percent better. My BCR Abl results came back not showing on June 6th and on June 8th I got sick..so I went off sprycel for a drug holiday during this illness....now preparing to re-uptake meds this weekend. I did another BCR-ABl one month later..last week..still waiting to see the results of that one..wondering if this illness could have any effect on cancer. We will find out... Otherwise, status quo, very high CPK, exhausted all the time from it...but choosing not to go on high dose steroids or immune suppressing drugs at this time...so, while I may change my mind in the future, for now...I remain positive and trying to fight the good fight. If CPK goes over 1000 then it starts kidney damage and thus, I will have no choice but to do one of the above interventions. that's my story, trying to stay cool, and feel better from this virus and get back to work. I have 6000 emails waiting...unbelievable...I lost 6 weeks in a blink! Hope life has calmed down for those struggling this summer and that we all can find some joy in the weeks to come! I hear there are some sweet movies out guaranteed to make you smile...so I am going to look into this.......:) Warmest regards and 18'as Beth. -----Original Message----- From: 'Jeanie' via CMLHope <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Jul 12, 2016 11:04 am Subject: Re: [CMLHope] Fatigue side effect testing nilotinib Anyone there. Testing My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jul 6, 2016, at 7:12 PM, Ricardo Gadelha <[email protected]> wrote: Thank you all for the feedback. I am trying acupunture and guaraná. Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" <[email protected]> escreveu: When I was first in Gleevec I wanted to go visit my daughter. She called and I told her I was too tired to pack. She said don't pack get some rest. So my advise to you is don't do anything you don't have to do. Rest as much as you can. Your body is fighting a horrible disease and its tired. Listen to your body. Try to exercise some it don't over due. Good luck. My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center On Jun 27, 2016, at 8:39 PM, kathy walls <[email protected]> wrote: I hear you!!! I had the fatigue the whole time I was on the drug. When I changed drugs because of the multitude of side effects I had the fatigue lessened dramatically. I'm on gleevec 200mg daily and while I'm not considered in remission I feel soooo much better I'll take the #'s I got and run Sent from my iPhone On Jun 27, 2016, at 7:54 PM, Ricardo Gadelha <[email protected]> wrote: Hi folks, Does anyone know how to deal with fatigue that comes with nilotinib 400 mg bid? -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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