Mentally I'm in a much better place than I was last year! Last yr was freaked out about the diagnosis, but then the meds me even sicker. Lost my hair, terrible skin problems all over my body. And still recovering from major back and flank surgery. I was ready to give up. But I found a local support group and this website! I didn't talk much but I sure read everything that was posted and learned a lot. Of course I wish somethings would get better but I'll take where I am now, instead of where I was! You all are great. Sharing your stories and stuff helped me a lot, helped me to what questions to ask my dr, including his expertise in treating CML! That's all he treats so I got a good dr and he works well with PCP which helps a lot!!! Had my grandson today for a few hrs so I'm beat. It's bedtime with a good book for bit Catch up with everyone again soon!
Kate 18's Sent from my iPhone > On May 31, 2016, at 5:03 PM, bkbarney via CMLHope <cmlhope@googlegroups.com> > wrote: > > Dear Kathy, > > I just wanted to say hello and let you know that many of us are out here, > following your posts and are cheering for you...The beginning years are often > the hardest for many with CML as finding the right TKI for you at just the > right dose which helps to keep the cancer under control..( chronic) while at > the same time enabling you to have a quality of life----that's not always > easy at first..but it does get better usually with time and patience......It > sounds like Tasigna worked well for the cancer, but your dosage was too high > for your system to handle. Since Tasigna is many many times more powerful > than Gleevec...it makes sense that you may have to take more Gleevec to > maintain a stable range for your BCR-ABL. There seem to always be trade > offs....in any case, try to keep your chin up...and stay close here so you > don't feel alone... > > thinking of you,, > > 18's Beth > > > -----Original Message----- > From: Marty Gartenberg <wa2...@gmail.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Tue, May 31, 2016 12:15 pm > Subject: Re: [CMLHope] Pictures > > 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 >>>>> >>>>> 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 >>>>> 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