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
>
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