Thanks Beth I have been thinking about going off for a while due to sore Ear jaw. I have been on sprycel for 5 years now. Do you get your CBC while you are off to see how your counts are doing? Thanks so much. Jeanieš
Sent from my iPhone > On Nov 18, 2014, at 4:55 PM, bkbarney via CMLHope <[email protected]> > wrote: > > > HI Jeannie, > > Yep, when I take time off, when I feel too toxic, I just go off for a brief > period, doctor supervised, and then go back on. I usually have no withdrawal, > but I am careful to not stay off too long or I will get the uptake side > effects returning to the medication. For me, that's migraines with sprycel > uptake...I am in complete remission from Dr. Druker's lab....a first, so am > very blessed. Just navigating side effects, and the muscle issues...doing the > best I can... > > take good care... > > Love, Beth > > -----Original Message----- > From: icandoallttc via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Tue, Nov 18, 2014 3:53 pm > Subject: [CMLHope] Beth sprycel ? > > Hi Beth > Sorry you haven't been well. Prayers to you and family. > When you stop your sprycel do you just quit? If you do do you have > withdrawal? > Just wondering. I thought you were never supposed to just quit a drug. > Let me know And thanks. > Blessing > Jeanie > > Sent from my iPhone > > On Nov 18, 2014, at 4:39 PM, bkbarney via CMLHope <[email protected]> > wrote: > >> Dear Sue, >> >> Sorry for the delay of this message. I had been feeling a bit under the >> weather. As many others have done, I want to welcome you to our family here >> of CML'ers...we share a lot, care a lot and encourage each other through >> this journey. I think many of us have gotten weird responses from those we >> have shared with regarding our illnesses. Many times it takes us educating >> them about exactly what this means..even then, it's hard because we all >> respond differently to the meds and thus, each have our own issues, side >> effects etc.. to contend with. >> >> I hope gleevec will work for you. It's nice to know there are now several >> other meds that are options..so remember that as you start this journey. >> Know we are here to share this journey with you. I am sorry you had some >> unsettling and upsetting reactions when you shared with others. Sometimes >> people just don't get it or are miss informed. >> >> My own sister- who is an oncologist..said...take a pill..it's like taking a >> vitamin everyday......so sometimes even the doctors, ( she is in research >> and not patient care so doesn't have the input from real people), have not a >> clue as to what we go through. >> >> Hope you and others have a great week. I will try to write something to >> update folks before the holidays. in short. I am doing O.K. Taking a sprycel >> holiday for two weeks, then back on post Thanksgiving. Am finally getting to >> the bottom of muscle disease issues..will know before the year is out >> exactly what this is and what the treatment is. Happy about getting >> clarity..Long time in coming. >> >> Love to all... >> >> Warmest regards..18's Beth >> >> >> >> -----Original Message----- >> From: 'Susan Zimmerman' via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Tue, Nov 18, 2014 2:09 pm >> Subject: Re: [CMLHope] Great NEWS >> >> Greenie, we're traveling to Florida to Treasure Island, arriving Saturday >> the 22nd. Only be there 4 days, then going to New Orleans for T-giving.. >> Keep that warmth going for us for just four days.....please! It's 17 >> degrees here right now. Just FYI >> >> Susan >> >> >> -----Original Message----- >> From: Myvety2k via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Tue, Nov 18, 2014 11:06 am >> Subject: Re: [CMLHope] Great NEWS >> >> I'm getting out all of my ice fishing clothing, long john's, etc, it's 60 >> deg. here in Fort Myers, FL. But then my daughter is visiting friends at >> the Wisconsin Dells and they live in Hawaii. It's 12 deg. their. It's >> going to get back up in the low 80's by Thursday here. They warm everyone. >> >> greenie >> >> In a message dated 11/18/2014 10:23:10 A.M. Eastern Standard Time, >> [email protected] writes: >> Great day I Florida. Glad everyone is good. >> Happy dance to all. >> Jeanie >> >> Sent from my iPhone >> >> On Nov 18, 2014, at 9:04 AM, "'Susan Zimmerman' via CMLHope" >> <[email protected]> wrote: >> >>> Thanks Marty and everyone for your kind words. I'm also gaining back >>> energy daily. >>> >>> Hey there, as a wrestler that Marty claims for me, I'm wrestling for all of >>> YOU to steadily move forward in your own healings or remissions, which >>> means I am praying for you to our precious heavenly Father, who knows your >>> hearts. Marty, we expect news soon of a kidney transplant happening for >>> you!!! Meanwhile all of our wishes are for you to feel well and have no >>> problems with dialysis and energy. >>> >>> Love and 18's, >>> >>> Susan F. Zimmerman >>> >>> >>> -----Original Message----- >>> From: Marty Gartenberg <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Mon, Nov 17, 2014 10:38 pm >>> Subject: Re: [CMLHope] Great NEWS >>> >>> Susan, >>> >>> Are you sure that in your former life you weren't a boxer or wrestler? You >>> beat the crap out of CML! Good for you! We are all doing the "happy dance" >>> for you. >>> >>> So now you really know the meaning of 18's. >>> >>> Marty >>> >>>> On Fri, Nov 14, 2014 at 12:18 AM, 'Susan Zimmerman' via CMLHope >>>> <[email protected]> wrote: >>>> Hello All, >>>> >>>> Great e-mail to the new "Sue", Marty!!! You are adorable and I love you. >>>> Welcome Sue from one to another....I have GREAT NEWS: >>>> You guessed it, I am MMR!!!!! My numbers are .04% after 8 months on >>>> lowest dose of bosulif. YAY, doing the happy dance for all He has done >>>> for me. I went 7 yrs and 2 mos. without any medication after being on >>>> gleevec 400 mg. for 2 yrs and 3 mos....had a brain hemmorhage, then >>>> another, so stopped gleevec for 7 yrs. Tried every other one and had some >>>> adverse bleeding effect that kept me from taking it. In 2010 had a >>>> major stroke, but doing fine now. Their only reasoning is I have >>>> cavernous malformations in my brain. Do you think this is any indication >>>> of the fact that I pride myself on being a little wacko??? Wanted to >>>> share how my numbers have plummeted: >>>> >>>> March 2014 - 23.5 Int'l. Scale BCR/ABL >>>> April 2014 - 9.0 Int'l Scale WITHOUT any meds >>>> May 2014 - 5.85 on bosulif 100 mg for only 30 days >>>> June 2014 - 3.7, 60 days on bosulif >>>> Oct. 2014 - .11% >>>> Nov. 2014 .04%, achieved MMR - hooray!!! >>>> >>>> Please continue praying that I have no bleeding side effects from 100 mg. >>>> They keep encouraging me to take 200 mg, but I say why rock the boat when >>>> this is working just fine? I am a rare bird, so don't try to copy what I >>>> do, anyone.....(about meds) >>>> >>>> Y'all are always in my prayers. I thank God for being able to know you >>>> and have the privilege of calling all of you my friends. Greenie and I >>>> met a few months ago, and it was wonderful! Try to enjoy every day as if >>>> it were your last, because we never know when He'll call us home! Just >>>> lost two good friends, and know they are in a better place. >>>> >>>> Love and 18's, >>>> Susan F. Zimmerman >>>> >>>> >>>> -----Original Message----- >>>> From: Richard H <[email protected]> >>>> To: cmlhope <[email protected]> >>>> Sent: Thu, Nov 13, 2014 11:45 pm >>>> Subject: Re: [CMLHope] newly diagnosed >>>> >>>> Safe Travels my Friend. >>>> >>>> Richard H. >>>> >>>>> On Wednesday, November 12, 2014 11:16:26 PM UTC-6, wa2yyx wrote: >>>>> Hi Marcie, >>>>> >>>>> We are all captains of our own ships because we steer our own ships in a >>>>> positive direction. Do you remember me saying that Leukemia is not only a >>>>> disease of one's body but their mind as well. It is how you handle >>>>> yourself that makes a big difference. If someone goes around with a >>>>> terrible attitude then that is what they will get. If someone goes around >>>>> with a good attitude then that is what they will have. >>>>> >>>>> Anyway, I have an appointment at Tampa Hospital for an annual exam for a >>>>> kidney transplant. It's just that I have to be current with everything >>>>> just in case it happens. >>>>> >>>>> The hospital is more then four hours away so I have to get some sleep now. >>>>> >>>>> 18's, >>>>> >>>>> Marty >>>>> >>>>>> On Wed, Nov 12, 2014 at 8:53 PM, 'Marcie Goodman' via CMLHope >>>>>> <[email protected]> wrote: >>>>>> Marty, >>>>>> >>>>>> What a lovely email to Sue. We are traveling together and I feel like >>>>>> you are the Captain of our ship! >>>>>> >>>>>> Thinking about you and keeping you in my prayers >>>>>> >>>>>> Love and 18s, >>>>>> >>>>>> Marcie >>>>>> >>>>>> Sent from my iPhone >>>>>> >>>>>> On Nov 12, 2014, at 8:34 PM, Marty Gartenberg <[email protected]> wrote: >>>>>> >>>>>>> Oh yes Sue, family. Well you know what they say? You can pick your >>>>>>> friends but your family is here to stay good or bad. No matter what you >>>>>>> can't change them. >>>>>>> >>>>>>> As my father used to say, "never argue with a moron, fool, idiot or >>>>>>> liar or someone that won't listen to what you have to say because no >>>>>>> matter what you try to tell them they will never change. >>>>>>> >>>>>>> But your focus shouldn't be on them but people that are willing to help >>>>>>> you. That is what this site is all about as you can see. >>>>>>> >>>>>>> When you travel on your journey all of us will be traveling along with >>>>>>> you. I really mean that, and you will see that your not alone but with >>>>>>> some very nice people that will be supporting you along. >>>>>>> >>>>>>> 18's, >>>>>>> >>>>>>> Marty >>>>>>> >>>>>>>> On Wed, Nov 12, 2014 at 4:25 PM, smgedit <[email protected]> wrote: >>>>>>>> Hi, >>>>>>>> First off, I love your terminology! (I'm a writer and editor by >>>>>>>> trade). Secondly, thanks for your support. I'm limiting who knows and >>>>>>>> who doesn't know what is going on for now but unfortunately one of the >>>>>>>> ignorant statements was by a family member. Oh well. I'm happy to have >>>>>>>> found this site and to be meeting nice people like you on it. Sue >>>>>>>> >>>>>>>>> Hi Sue, >>>>>>>>> >>>>>>>>> I read your post and just wanted to make some comments. Personally I >>>>>>>>> think that your hanging around with some people that I would classify >>>>>>>>> as Anal Orifices. And I only say that to be polite. Or even more >>>>>>>>> possible they suffer from Rectal Cranial Inversion (their head is up >>>>>>>>> their Azz. >>>>>>>>> >>>>>>>>> I have to tell you that if one of them had CML or any other type of >>>>>>>>> cancer then they would certainly have a different attitude. >>>>>>>>> >>>>>>>>> I hate to say this but sometimes you should keep some things to >>>>>>>>> yourself because of people like that. The less they know about you >>>>>>>>> then the better it will be for you. >>>>>>>>> >>>>>>>>> Anyway, now that is off my chest let me go into something more >>>>>>>>> important. First, you have come to right place. All of those that are >>>>>>>>> here are very compassionate and really care about each other. They >>>>>>>>> have already gone through this and will be very happy to help you out >>>>>>>>> with any questions and anything else they can and will help you with >>>>>>>>> this. >>>>>>>>> >>>>>>>>> CML is not what it used to be because it is not a "death sentence" >>>>>>>>> anymore. There have been so many improvements in it's treatment, not >>>>>>>>> like in my day. I don't know what you may know about me but I am here >>>>>>>>> to help you out in any way that I can. >>>>>>>>> >>>>>>>>> If you have read any of my posts you will see what I mean. Remember >>>>>>>>> any time that you would like to post anything please feel free to do >>>>>>>>> so. I would like to welcome you to this site. >>>>>>>>> >>>>>>>>> Sue, whenever I end any of my posts I end it with two numbers 18 >>>>>>>>> which is the symbol for life. >>>>>>>>> >>>>>>>>> 18's to you Sue. >>>>>>>>> >>>>>>>>> Marty >>>>>>>>> >>>>>>>>> On Wed, Nov 12, 2014 at 10:23 AM, smgedit <[email protected]> wrote: >>>>>>>>>> I was diagnosed with CML a little over a month ago and had a bone >>>>>>>>>> marrow biopsy and started taking Gleevec last week. I'm trying to >>>>>>>>>> learn as much as I can about CML and my oncologist is great about >>>>>>>>>> giving detailed explanations and answering questions. But I was >>>>>>>>>> wondering if anyone else ever got what I consider a strange reaction >>>>>>>>>> from others about my news. In the past week, I've had people say the >>>>>>>>>> following things to me which upset me a lot. >>>>>>>>>> >>>>>>>>>> "So what's the big deal? So you have to take a pill...I have to take >>>>>>>>>> this antibiotic for my tooth infection this week too." >>>>>>>>>> >>>>>>>>>> "There is so a cure for leukemia. Plenty of people are cancer free. >>>>>>>>>> You don't know what you are talking about." >>>>>>>>>> (This after explaining about the drugs and "response," vs. >>>>>>>>>> "remission." etc.) >>>>>>>>>> >>>>>>>>>> "Well I hope you have a speedy recovery. Good luck." >>>>>>>>>> >>>>>>>>>> I know I can't put my energy into dealing with this right now but it >>>>>>>>>> is weighing on my mind anyway. It made me happy to find this group >>>>>>>>>> online where I know people can at least "get" it and where some of >>>>>>>>>> you have been living with CML for quite a while. >>>>>>>>>> >>>>>>>>>> Anyway, that's my first post. Nice to meet you. >>>>>>>>>> >>>>>>>>>> Sue >>>>>>>>>> -- >>>>>>>>>> -- >>>>>>>>>> [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/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 [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/d/optout.
