Hi susieq and so glad to hear from you. Sorry about your facebook experience. We are living proof that there is no cure as of yet and that we are warriors. I have had three tkis fail me as you know. I did go into blast at one time. I seem to be tolerating ponatinib fairly well. I have lost a lot of my hair and my skin is so dry as side effects. My eyes are dry also and get blurry at times. I'm just fighting on. If you like Facebook just ignore the post you don't like and help who you can. Glad the weather is good. Blessings
My Motto: Faith and Pills Jeanie 🐟🐟18,s Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center > On Aug 21, 2015, at 3:23 PM, Myvety2k via CMLHope <[email protected]> > wrote: > > Suzieq, Nice to hear from you and glad that your doing well. I do miss > Springfield, MO. the lakes, mountains, etc. But then I do like being here in > Southwest Florida. Everything is green all year long but one thing I can't > stand and they love me lot's are the no-see-em's. Why are they on earth?, > they serve no purpose and their so small you can't see them. And they itch > for 7 to 8 days. > > Anyway glad to hear from you and take care of yourself. > > greenie > > In a message dated 8/21/2015 1:16:17 P.M. Eastern Daylight Time, > [email protected] writes: > Hello to all.......just wanted to say that it's good to hear from y'all from > time to time. I decided to leave the two Facebook groups a couple of days > ago. I hated to do it because I thought it was good for the new ones being > dx'ed to have the help of those of us who have been around awhile. :) Then I > got upset with some who were posting stuff about being in "remission after 2 > years" and being able to come off the TKI's. Another one said that after > being dx'ed, their doctor told them "aww, don't worry, you will be taking > this drug for about a year and then you'll be cured". ????? I have come > unglued a few times over these people saying stuff like this or always saying > "I'm in remission".......I asked this one lady where she got her information > (the 2 year thing) & she posted some link to the England study. I wanted to > tell her that according to my doctor, over half of those people who came off > Gleevec had their CML return & some accelerated right to Blast stage. > (actually, I think I did tell her that, but they didn't listen to me) But, I > could see she was in an argumentative mood and I don't argue. I told the > one person whose doctor told her that about "taking this pill and being cured > in a year's time" that she should find herself/himself a new doctor, one who > is a CML specialist or at least a good Onc./Hem. Some of us did try to tell > this group that there is just not enough evidence yet to prove that there is > a cure. The drugs haven't been around long enough. There was one lady who > has been taking Gleevec for 15 years and has been "undetectable" for almost > that long whose doctor told her she could now quit taking her medicine and > they would see how she did. The lady said she felt like she was flying > without her kite. :) I could understand that. Okay, I am done ranting > now....just wanted y'all to know what some were being told. I believe it's > good to give people hope, but not a dangerous false hope. Some of us older > ones tried to tell them that not everybody's body was the same, some > responded differently to the drugs. We tried to tell them about how these > drugs haven't been around long enough to gather enough evidence. But, you > might as well be talking to the wind. > > Greenie, it is always good to hear from a fellow Missourian, :). We are > experiencing fall like temperatures in the middle of August. Can you believe > it? 70's and mid-80's! Don't know how long it will hold out, but I'm sure > enjoying it. And, we've had so much more rain this year that normal. > Everything is still nice and green around here. > > Jeannie: I noticed that you and I were dx'ed exactly the same month and > year, stared Gleevec the same time. I'm sorry that it didn't work for you, > thankful for all these newer TKI's coming out that you had something new to > try. I know you've fought many more battles than I have had to deal with. > Thankful each time I see you posting here. God bless you > > Marty, thank you for letting me know that Skip is still with us. I was a > little afraid when not hearing from him in so long. > > Keep Looking Up, > > Suzieq > -- > -- > [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.
