Re: [CMLHope] Fatigue side effect testing nilotinib
Hi Beth and so sorry you have been so ill. I too had an awful virus that started with a sore throat. I had to take round of antibiotics but was so full of mucus and sick for weeks. Maybe it's a new type of virus because I had all my flu shots. I still have this awful side pain so another rounds of scans soon. They show nothing so far. I'm in MMR but still have some detectable cells. Fight in sweet warrior. We are worried about Marty. Marty are you there??? 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 13, 2016, at 1:36 PM, bkbarney via CMLHope > wrote: > > 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 sickvirus 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 illnessnow 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 > To: cmlhope > 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 wrote: > > Thank you all for the feedback. I am trying acupunture and guaraná. > Em 28 de jun de 2016 11:39, "'Jeanie' via CMLHope" > 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 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 s 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 >> 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. >> To post to this group, send email to CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ---
Re: [CMLHope] Anyone out there. Testing
91 right now. Air condition is nice right now. 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 13, 2016, at 11:09 AM, Myvety2k via CMLHope > wrote: > > It's going to be in the upper 90's here in Southwest Florida, BUT, still > better then SNOW... > greenie > > In a message dated 7/13/2016 9:41:55 A.M. Eastern Daylight Time, > cmlhope@googlegroups.com writes: > 82 right now in Fl. Going up soon. It's a little cloudy here. Been having > great thunder storms. > > 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 13, 2016, at 12:18 AM, Richard H wrote: >> >> How hot is your skillet. Most of our Missouri area has a heat index in the >> afternoon above 100 degrees and one day I remember was 114 degrees in the >> shade. a race a few weekends ago the race track was reading 141 degrees >> while they were racing. >> >> The World weather this year is totally UNBELIEVABLE!!! >> >> Richard H. >> >>> On Tuesday, July 12, 2016 at 8:30:43 PM UTC-5, Angie wrote: >>> We're roasting in Canada! >>> How hot is it? >>> The chickens are laying hard boiled eggs. >>> >>> From: sherri swanson >>> To: cml...@googlegroups.com >>> Sent: Tuesday, July 12, 2016 8:06 PM >>> Subject: Re: [CMLHope] Anyone out there. Testing >>> >>> Hi Jeanie, >>> >>> I'm out here in the heat & humidity trying to stay cool. 😋 >>> >>> Sherri >>> >>> On Tue, Jul 12, 2016 at 11:03 AM, 'Jeanie' via CMLHope >>> wrote: >>> >>> >>> 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 >>> >>> -- >>> -- >>> [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 cml...@googlegroups.com >>> 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 >>> --- >>> 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 mailto:cmlhope...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- >>> -- >>> [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 cml...@googlegroups.com >>> 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 >>> --- >>> 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 cmlhope+u...@googlegroups.com. >>> For more options, visit https://groups.google.com/d/optout. >> >> -- >> -- >> [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 CMLHope@googlegroups.com >> To unsubscribe from this group, send email to >> cmlhope-unsubscr...@googlegroups.com >> 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 cmlhope+unsubscr...@googlegroups.com. >> For more options, visit https://groups.google.com/d/optout. > -- > -- > [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 CMLHope@googlegroups.com > To unsubscribe from this group, send email to > cmlhope-unsubscr...@googlegroups.com > 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 cmlhope+unsubscr...@googlegroups.com. > For more options, visit http
