Hi Kathy, Well that is the story, living rather then existing, and we all have that in common, although sometimes we feel that we are existing, but that is another story that most of us have been through myself included...
Anyway, since your counts are slowly rising and you seem to be tolerating the 200 mg of Gleevec except for your counts going up then your doctor may subscribe a higher dose probably 400mg which is the usual dose when your dealing with Gleevec first starting out but not necessary because we are all different. It just has to find the "happy range" to try and keep on the right track, or maybe he will do some changes with your TKI's? I remember asking you if your oncologist specializes in CML? You remember something... Yes it is those two numbers.. 18's, Marty Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it mild!! Horrible rash and cysts. I then started 300mg daily of gleevec(tasigna was 490mg) all my numbers looked great 3 mo out with the gleevec but still had some skin issues so he reduced the dose to 200 my daily and that has made a big improvement for my skin and of course self esteem. But the down side I guess is that all magical cancer cells per billion is creeping up. So far he's not worried but he said we will have talk about increasing or changing meds. But for now I'm living not just exsiting!!! On Tue, May 31, 2016 at 11:35 AM, kathy walls <cand...@originalsbykate.com> wrote: > Yes Marty, I was on tasigna from 1/15 to 12/15. Skin issues is putting it > mild!! Horrible rash and cysts. I then started 300mg daily of > gleevec(tasigna was 490mg) all my numbers looked great 3 mo out with the > gleevec but still had some skin issues so he reduced the dose to 200 my > daily and that has made a big improvement for my skin and of course self > esteem. But the down side I guess is that all magical cancer cells per > billion is creeping up. So far he's not worried but he said we will have > talk about increasing or changing meds. But for now I'm living not just > exsiting!!! > 18's > Kate > > Sent from my iPhone > > On May 31, 2016, at 9:41 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Hi Cathy, > > Please refresh my mind... Why did you have to stop Tasigna in the first > place. If my memory serves me correctly was it because of some skin > problems? > > Which ever way it is has your doctor suggested that you should try another > TKI? and how long are you using Tasigna? > > 18's, > > Marty > > On Tue, May 31, 2016 at 8:41 AM, kathy walls <cand...@originalsbykate.com> > wrote: > >> On the tasigna my molecular level was >> 0.04. Since I changed to gleevec that level has risen to 3.98. So that's >> where I'm at >> Sent from my iPhone >> >> On May 30, 2016, at 10:18 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Hi Kate, >> >> First of all if you have CML then you have the Philadelphia Chromosome. >> What bothers me is if the oncologist told you about you never reaching >> remission, then what level was he talking about? Have you taken any PCR >> tests yet? And if you did then what were the results? But since you are a " >> newbie" you may have not taken any, and also is your doctor a CML >> specialist? >> >> There is a lot to think about, trust me you will learn to ask questions. >> Remember the more ask the more that you will learn. >> >> Glad to see that your sporting the 18's >> >> 18's to you as well. >> >> Marty >> >> On Mon, May 30, 2016 at 9:27 PM, kathy walls <cand...@originalsbykate.com >> > wrote: >> >>> I'm still a newbie was diagnosed 1/9 and started tasigna on the 23rd, oh >>> yeah I'm lucky enough to have the ph chromosome to boot. I stopped tasigna >>> in December because of horrible side effects, I got an awful rash and >>> cysts. Switched to Gleevev and I feel much better, but did dr said at this >>> level i will never see remission. I'm ok with that. Quality of like is >>> much important to me than quantity. I'm 56 I have a 4 yr old grandson and >>> 3 month old grandson. I'd much rather a little pep in my step than being >>> in remission but to sick to anything! Just my thoughts. We all are >>> fighting the same fight each in our way >>> BEST TO ALL. -18's >>> Kate >>> >>> Sent from my iPhone >>> >>> On May 30, 2016, at 8:55 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Yes Jeanie, >>> >>> we are still all kicking! Jeanie what happened in the past according to >>> your oncologist about you being to old should remain in the past and I will >>> tell you why. I also want you to think about something called BASHERT, >>> which I have already mentioned many times. It's meaning is it was meant to >>> be. Sound familiar? I believe that things that are meant to be are >>> predestined. >>> >>> For instance this site, and everyone that reads it or posts on it are >>> meant to be because all of us are still kicking (as you said) and we all >>> share this disease called CML and let's not forget that. >>> >>> There are so many stories that surrounds us and every one of them are >>> meant to be. We all stand here and try help each other. Why? it's because >>> it is meant to be. We give of each other, and also to each other, and you >>> know what I am talking about. It is all about trying to live our lives the >>> best way that we can. >>> >>> Also, all of these new TKI's weren't they all predestined or if you >>> like, meant to be? That is how I look at things, how about you? And how >>> about everyone else here? >>> >>> Why do you think I always end any of my posts with those two >>> numbers? 18's, because it stands for life, and isn't that we have now. >>> >>> 18's, >>> >>> Marty >>> >>> On Mon, May 30, 2016 at 5:41 PM, 'Jeanie' via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>>> Thank you so very much Marty. >>>> If I knew then what I knew today I think I would have >>>> Had the transplant. My onc at that time thought I >>>> Was too old. However I'm still alive and kicking >>>> After 4 tkis. I am sick; I can't seem to kick this flu. >>>> Just resting after my vacation. >>>> I sure had a good time with family. >>>> Thanks for all as usual. >>>> >>>> Sent from my iPhone >>>> >>>> On May 30, 2016, at 4:57 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>>> >>>> >>>> Hi again Jeanie, >>>> >>>> I just spoke with my good friend Gloria today and I asked her if she >>>> wouldn't mind for me to send you and the rest of the group three of her >>>> pictures. One before her BMT, one during her BMT and one about one year >>>> after her BMT. She thought it was a very good idea. She also mentioned that >>>> she would like to try getting onto this CML site and introduce herself so >>>> please be on the lookout for her. >>>> >>>> The main thing here is those pictures which proves that there is life >>>> after a bone marrow transplant. Think about something else... What about >>>> those 1,286 people, including myself which now makes it 1,287. >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>> Scroll down please... >>>> >>>> >>>> >>>> >>>> GLORIA >>>> *[image: Reply to cmlhope@googlegroups.com]* >>>> *[image: Forward]*Forward >>>> Edit subject >>>> Pop out reply >>>> To >>>> cmlhope@googlegroups.com >>>> CcBcc >>>> Cc >>>> Bcc >>>> >>>> Replies will be sent from wa2...@gmail.com >>>> Loading... >>>> >>>> >>>> >>>> <image.png> >>>> >>>> Image: >>>> Small|Best fit|Original size|Remove >>>> >>>> Sans Serif >>>> >>>> -- >>>> -- >>>> [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 >>>> 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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 https://groups.google.com/d/optout. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> 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