An Alternative CML Support Group
Posted 24 January 2016 - 10:47 PM
I'm an AML survivor that frequents the LLS boards and another AML support group at dailystrength.Org that I dearly love.
I am concerned about the format changes. These support groups are the only form of "social media" I use.
I am providing a link below of the CML support group on daily strength
DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT
Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.
Qrtrly PCR & Phlebotomy for high iron stores
Almighty God is my redeemer and HEALER!!@
Psalm 103:1-5 — "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..
Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."
Posted 25 January 2016 - 10:26 AM
I would suggest waiting to see how things turn out before signing up for various chat groups. We should do some research and generally decide together what to do rather than all go in random directions. There are quite a few chats out there. I chose LLS for a good reason. If LLS cares about us they will resolve this. We shall see.
Posted 25 January 2016 - 03:23 PM
I agree with Trey. I emailed my concerns to LLS, and I did hear back from several people. They seem to understand the importance of the issues we've raised. They are very excited, as they should be, about the potential opportunities for research and education that will be available in the new community. I just don't think they realized the problems that would be caused by the changes to the format of our discussion board. I'm hoping that now that they understand, they will preserve the structure of the board that has enabled so many of us to get the practical help and emotional support that we have come to rely on.
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
Posted 25 January 2016 - 05:35 PM
We need to remember that unless the changes are truly horrendous we can adjust. At my workplace we constantly have changes made to our applications, we complain about it for awhile, but we learn how to use it.
Some of the changes made at my workplace are due to end of life for servers, running out of storage space on servers, the applications becoming that old that trying to maintain them just costs too much money and is unworkable and there is no support provided to them etc.
I think I'll wait and see and hope they can provide something that continues to provide the forum experience plus gives us something new and useful.
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