Thanks Beth This helps a lot. I take tramodol for pain and they have put it into controlled drug status. Don't know why. Imitrix works well but makes you feel weird. I am trying to cut down on sprycel. I've been I remission for a while now. Just recently my platelets started rising. That has always been my problem. I've had to have my blood cleansed a few times because if this. Platelets and WBC will just start going way up. Glad you are managing so well. I have no muscle problems as of yet. Blessings and thanks Jeanieš
Sent from my iPhone > On Nov 20, 2014, at 11:37 PM, bkbarney via CMLHope <[email protected]> > wrote: > > > Yes Jeannie. I used to go every two weeks, then once a month, now it's once > every 2-3 months. I will go every few weeks while off. Don't plan on being > off long term...but enough time to clear up some of these side effects and > build some physical strength/ muscle back. Then return and try to maintain my > physical self. I wish you could have some respite from the head aches. Jaw > pain..Have you been in remission for a while? They told me to pre-medicate so > minutes before taking sprycel with a pain med, t so I would not get such bad > headaches. I traded off between tramadol and imitrix. They did not want me to > get chronic headaches- migraines...I wish I could help more. I know we are > all so different. I am blessed to not have blood count issues. I am sure it > is because I have never been able to tolerate more than 40% of any drug or > less....Stay close. take care, Beth > > -----Original Message----- > From: icandoallttc via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Tue, Nov 18, 2014 4:05 pm > Subject: Re: [CMLHope] Beth sprycel ? > > 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. > Jeanie > > > 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 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