Dear Everyone, I would like to take this opportunity to wish everyone a very healthy and happy Thanksgiving with many more to come. May you enjoy every day and have a wonderful holiday season.
18's, Marty On Sat, Nov 22, 2014 at 2:41 AM, bkbarney via CMLHope < [email protected]> wrote: > Dear Jeannie, > > Good news is you probably will not get them if you don't have them > already..We uptake the drugs and they affect each of us so > differently....We are blessed to tolerate it as well as we both do. May you > have a blessed holiday.. > > Happy weekend to all..and to anyone living near buffalo....our hearts go > out to you...8 ft of snow...beyond my comprehension!! > Beth > > > -----Original Message----- > From: icandoallttc via CMLHope <[email protected]> > To: cmlhope <[email protected]> > Sent: Fri, Nov 21, 2014 10:00 am > Subject: Re: [CMLHope] Beth sprycel ? > > 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 > Jeanie > > > 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 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 [email protected]. >>>>>>> For more options, visit https://groups.google.com/d/optout. >>>>>>> >>>>>> >>>>>> -- >>>>> -- >>>>> [CMLHope] >>>>> A support group of http://cmlhope.com >>>>> 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