Hi Joyce, I just saw that you go to Ann Arbor to see Dr. Talpaz for your husband and live in Southern Illinois. Have you checked out the CML specialist that replaced Dr. Tallman at Northwestern in Chicago? I have not seen her, but my oncologist has hinted that he will send me to her should I need to to see her. I use to see Dr. Tallman every 6 months until he left. I could get her name for you if it is an avenue you would like to explore. Let me know.
Sherri in IL On Fri, Aug 21, 2015 at 10:35 PM, Joyce Mesnarich <[email protected]> wrote: > Susieq > So sorry to hear about your experiences on FB. I agree: hope is good, > but not fasle hope. I certainly hope you don't leave us here on CML Hope. > You are a valued member/contributor. What part of MO are you from? We > live in Southern IL and are also enjoying the fall-like weather. > > Do you have a CML oncologist in the St Louis area? My husband is > traveling all the way to Ann Arbor, MI, to see Dr Talpaz. He is worth the > trip, but as airfare gets higher and higher it is getting too expensive. > But at the present time he really needs a CML specialist. So I guess we > will just suck it up and pay the bills. > Joyce in IL > > > On Aug 21, 2015, at 12:16 PM, Suzieq wrote: > > 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.
