Advanced Member
Posted 20 January 2016 - 10:03 AM
The phone number is
I just spoke with a very understanding person there who said I was the only person to call so far to voice an objection to the horrible new facebook-style format.
If enough people call, maybe we can get them to relent and keep these boards as is!
Peace and best wishes to all - no matter what happens we still will have each other, even if we have to resort to tin cans and string, or carrier pigeons, or smoke signals, semaphores.... you get the idea!
DX 6/2013
Sprycel 100mg
CCR 3/2015
MMR 2/2016
<.01 IS 10/16 hopkins didn't report actual percentage
.007 IS 6/2017
<.01 12/2017 again no actual percentage but didn't see the report myself yet
Advanced Member
Posted 20 January 2016 - 11:01 AM
... or at a minimum they keep both styles going side by side. The discussion thread protocol needs to be preserved.
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
Advanced Member
Posted 20 January 2016 - 11:29 AM
The phone number is
I just spoke with a very understanding person there who said I was the only person to call so far to voice an objection to the horrible new facebook-style format.
If enough people call, maybe we can get them to relent and keep these boards as is!
Peace and best wishes to all - no matter what happens we still will have each other, even if we have to resort to tin cans and string, or carrier pigeons, or smoke signals, semaphores.... you get the idea!
What happened to the phone number? Maybe they don't want any more calls.
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
Advanced Member
Posted 20 January 2016 - 01:16 PM
We can easily contact them by scrolling to the top of this page and clicking the "Contact Us" button. We have the option of mail, e-mail and phone.
Please, everyone, let them know if you are concerned about the change. As I see it the new changes will make discussions impossible. It would be one thing if we could "reply" to the "thoughts" but all we can do is post new thoughts.
The social media template is not a one size fits all.
Pat
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Advanced Member
Posted 20 January 2016 - 01:33 PM
We can easily contact them by scrolling to the top of this page and clicking the "Contact Us" button. We have the option of mail, e-mail and phone.
Please, everyone, let them know if you are concerned about the change. As I see it the new changes will make discussions impossible. It would be one thing if we could "reply" to the "thoughts" but all we can do is post new thoughts.
The social media template is not a one size fits all.
http://www.lls.org/contact/contact-us
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 20 January 2016 - 02:18 PM
Dx: 11/2015
Sprycel: 100mg
May-17: 0.0095% IS
Aug-17: 0.0048% IS
Nov-17: 0.0066% IS
Advanced Member
Posted 20 January 2016 - 02:38 PM
Admin
Posted 20 January 2016 - 04:10 PM
Thank you all. We received your emails, someone from the appropriate department will get back to you shortly.
Advanced Member
Posted 24 January 2016 - 09:54 PM
CML History....
DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,
.385-4/14
.365-7/14
.13-10/14
.11-1/15
.045-4/15
.07-7/15
.06-10/15
.04-1/16
0.00- 4/16-10/17
70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17
tremendous reduction w periorbital edema and fatigue
Advanced Member
Posted Yesterday, 10:47 AM
Bump!
Kirk
2015 0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%
2016 0.041%, 0.039%, 0.025%
2017 0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%
2018 0.233%
Member
Posted Yesterday, 01:41 PM
Member
Posted Yesterday, 01:53 PM
Thank you! Email sent!
My facts:
Diagnosed 2003 and have taken Gleevec 400 mg until recently. I am now taking 200 mg and will go have PCR testing every three months to see if all stays relatively stable. Have bounced between PCRU, PCR "weak positive", and .005 ever since. Had a brief rise in PCR in 2005 for which I added Interferon (Yuck!) for 6 months which sent me back to previous levels and left me with neuropathy.
New Member
Posted Yesterday, 05:38 PM
Email Sent!
KB
Diagnosed March 2016
Gleevec, 400 mg
2016 44.46 0.98 0.15% IS
2017 0.26 0.11 0.05 0.06% IS
2018 May
Advanced Member
Posted Yesterday, 06:20 PM
I would suggest the emails and calls will not help or change anything. Please read this, then decide what each of you will do:
http://community.lls...ite-on-feb-1st/
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