Advanced Member
Posted 20 January 2018 - 09:34 PM
I don't buy the argument that it is not cost effective to maintain this site. Someone made a decision at LLS (a bad one IMHO) and they are sticking to their guns rather than cutting their losses. Even if cost really is the issue, there must be another platform out there with a more similar or user friendly layout.
Also, if they are converting a year's worth of data to the new format, why stop there?
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU
Advanced Member
Posted 20 January 2018 - 11:45 PM
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 21 January 2018 - 05:27 PM
I am so upset by this...there is a treasure trove of data here that is invaluable. By chance, I recently found this support group - it's in the UK but maybe they would open it up to the world? https://www.cmlsupport.org.uk/forum/1
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
Advanced Member
Posted 21 January 2018 - 05:53 PM
I am not sure I can make the new "Community" site work well enough for us even if I wanted to. I posted these comments on the "Community" site:
If LLS cares about the long term members who have been on the LLS Support Groups, here are comments:
Give posts titles. Add a title block. Without titles it is just a jumbled mess.
The "Search" function only searches on the stuff posted by LLS, unless the user clicks another button, Not very intuitive.
Must separate the Member posts from the LLS posts -- need separate sections of the site. Sorry to say, the LLS posts are generally useless to us, and they take up a huge amount of space with all the graphics. And most are just ads for drug companies.
This Community site is mainly a "push site" where LLS pushes stuff toward us. That is not what we want or need. We want and need a place to communicate with each other, not have LLS push stuff at us. The LLS stuff gets in the way of the stuff we care about, which is talking to each other. Sorry, but we do not want to talk to LLS. We actually know more about this disease than LLS does. We should be treated accordingly.
If our old posts are migrated over it will be useless unless they are searchable. This Community site does not currently do that.
Ditch the Medvizor graphics, if not all their stuff entirely. They are spam to us.
We almost never had a spam problem on the other LLS site. Justifying this new site as protecting us better from spam is misinformation. If the issue is cost, LLS is paying way too much for the Community site since they are getting junk.
LLS did not fix most of the things I suggested two years ago. Probably will not fix these issues, either. Too bad, LLS has given us a nice place to talk for many years. Now LLS has forgotten what their mission is. Very sad.
Edited by Trey, 21 January 2018 - 06:49 PM.
Advanced Member
Posted 21 January 2018 - 06:43 PM
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
Advanced Member
Posted 21 January 2018 - 10:26 PM
I am not sure I can make the new "Community" site work well enough for us even if I wanted to. I posted these comments on the "Community" site:
Thanks Trey
Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).
Commenced monthly testing when MR4.0 lost during 2012.
2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)
2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)
2015: <0.01, <0.01, <0.01, 0.013
2014: PCRU, <0.01, <0.01, <0.01, <0.01
2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01
2012: <0.01, <0.01, 0.013, 0.032, 0.021
2011: 38.00, 12.00, 0.14
Advanced Member
Posted 21 January 2018 - 10:45 PM
Advanced Member
Posted 21 January 2018 - 10:55 PM
Advanced Member
Posted 22 January 2018 - 10:47 AM
Yes, please! I am old, tired, and can only focus on trying to be as well as I can be. I have zero computer skills. Could not care less about Facebook or any other social media - I'm amazed at how any young person has the time to constantly tend this c--p. I will be so bereft if I lose this group that I don't think I can describe the loss to me, personally. It will plunge me into depression and loneliness. And ignorance! I will have absolutely no place to go for information about what's really happening to real CML patients. The LLS? The oncologist? Are you kidding? I check in here a couple of times a day, and it's the only thing I do on my computer like that. No games, no videos, no social media. My computer is old and tired, too. It can't take clutter and ads without balking.
I literally know no one with CML, after almost 9 years of having it. All my colleagues are here. I cannot move to the new site. Cannot and will not. So, I and my voice, will be lost as well.
Could some of our computer-savvy and/or younger members please take the lead and re-establish us, in this format, as a private entity? I want to put my name down on a list for that - please don't leave me behind!!!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 22 January 2018 - 11:31 AM
I have been thinking what it would take to create our own forum ...
There are several 'free' sites which offer forum creation and maintaining services. You have to put up with ads - but that might not be so bad if they are off to the side. I wonder if this is 'doable' in only 8 days and how to advertise so we get critical mass.
In a perfect world LLS 'hears' the cries of the masses and yields.
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 22 January 2018 - 12:13 PM
I agree we do need this site. I don't know if the LLS changed the the forum to unsecured but have avoided logging in and sharing my medication issue. If I had it would have saved almost a couple weeks of stress. Now i'm sharing to illustrate how this site works.
Apparently, I'm learning not all information is the same. My insurance has changed. I've had two pharmacies with my medication without issue so I thought this would be no different. SURPRISE. Since there was no issue, I didn't see the need of ordering from the old pharmacy before the year ended. I had been hospitalized and ended up on a three week Sprycel vacation which makes the thought of doing without my meds particularly scary. The new pharmacy, LDI, insisted it was a "drop shipment" issue. The Sprycel manufacturer cut out the middle man. LDI made arrangements with my old specialty pharmacy but it is not a simple matter of them just shipping me my meds and billing LDI. I was on the phone for a good 30-45 minutes with a customer service rep getting info. She is going to expedite the case but watching my meds go down day by day is beginning to freak me out. Talked to a women that deals with insurance at the doctor's office shared that there is only a very small number of specialty pharmacies and LDI is not one.
Had I logged in here, I'm sure one or more of you great folks would have shared about the number of specialty pharmacies and I wouldn't have lost precious days. My previous pharmacy/insurance allowed for a three month supply and this new one only allows for one. Again, I'm sure you guys would be able to share how that works for you too.
Hoping the LLS changes their mind, makes this site secure, and keeps the forum. Will continue to check in but will not log in.,
DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16; .0528 8/16; .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17
Advanced Member
Posted 22 January 2018 - 05:25 PM
Advanced Member
Posted 22 January 2018 - 11:04 PM
If we want to use that approach, I think we are best off leasing a server with a database and setting up something like this: https://www.phpbb.com/support/docs/en/
I'd be willing to help out, but I think the timeframe is tight. As for advertising, no matter the approach we decide to use I think we could post right in the new social media style LLS message board. As far as I can tell nobody at LLS monitors the new page with any regularity (or nobody cares enough to post replies to our concerns in any forum). All I got is a cookie cutter email response (I already saw it posted in this forum) after submitting my concerns via email.
I have been thinking what it would take to create our own forum ...
There are several 'free' sites which offer forum creation and maintaining services. You have to put up with ads - but that might not be so bad if they are off to the side. I wonder if this is 'doable' in only 8 days and how to advertise so we get critical mass.
In a perfect world LLS 'hears' the cries of the masses and yields.
3/23/2016 Dx PCR 93.4399% IS, FISH 87%
3/30/16 Sprycel 100mg
4/15/2016 liver toxicity and a brief stint on Tasigna 600mg book-ended by drug breaks
6/6/2016 resumed Sprycel at 50 mg increased to 70 one month later followed by 100mg
6/17/2016 FISH Test 2%
8/22/2016 PCR 0.0035% IS
11/7/2016 PCRU
12/29/2016 PCRU
4/5/2017 PCRU
6/28/2017 PCRU
10/26/2017 PCRU
Advanced Member
Posted 23 January 2018 - 09:24 AM
Advanced Member
Posted 23 January 2018 - 10:00 AM
I complained to the Patient Access Manager in Florida and ultimately got the following response:
We realize our Discussion Boards have become a place patients and caregivers rely on to find support and exchange information. We know how important this forum is for members, and are doing everything we can to preserve the discussions and aid in a smooth transition over to our new platform, LLS Community.
While we have relied on the technology for LLS Discussion Boards for many years, this technology no longer allows us to update the platform in a cost effective manner and maintain full control of its functions. Further, LLS Community better safeguards our community from inappropriate content and provides the ability to update the platform as technology evolves.
We truly appreciate your feedback regarding LLS Community. We will consider this, as well as feedback from other members, as we continue to enhance LLS Community.
Please feel free to respond with any additional questions or concerns.
Thank you,
Dr. Gwen Nichols
I will forward Trey's comments to Dr. Nichols, but I doubt there is anything we can do to stop this. The UK CML site is pretty good - I have used it sporadically and may start using it more starting in February. This group has their own Tray - her name is Sandy Craine and she is great.
Such a shame
Dx 9/26/16 WBC 28800; platelets 749; FISH 97% PCR 43%
Tasigna 600MG per day
October 2016 PCR 22% IS
November 2016 PCR 5.8% IS
December 2016 PCR 0.1% IS MMR!!
March 10, 2017 PCR 0.006% IS MR 4.22
Tasigna 450MG per day
April 5, 2017 PCR <.003% IS
June 5, 2017 PCR <.003% IS (dose reduction validated!!!)
Tasigna 300MG per day starting June 15, 2017
6-day drug break starting June 20, 2017 due to multiple AE's
July 24, 2017 PCR <.003% IS
September 18, 2017 Negative, AKA PCRU
Tasigna 150mg per day starting 9/18/17
October 30, 2017 Negative
December 11, 2017 Negative
Advanced Member
Posted 23 January 2018 - 10:12 AM
cmljax, "I will forward Trey's comments to Dr. Nichols, but I doubt there is anything we can do to stop this. The UK CML site is pretty good - I have used it sporadically and may start using it more starting in February. This group has their own Tray - her name is Sandy Craine and she is great."
There is only one Trey.
I wonder if we all "move" over to the U.K. site if that will make a difference?
Perhaps if we use the remaining days before this board goes dark, we can find a new site to migrate and post here for all to go and sign up? I am willing to give that a try? Perhaps the U.K. site? Any others?
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 23 January 2018 - 11:59 AM
I too shared my concerns with the Mission Board about the format of this discussion board versus the format of the community board. I received a letter that stated they appreciated the feedback and will consider all the feedback they are receiving as they continue to enhance LLS community. Maybe there is hope as I know Trey is working on this and many of you have also shared your feedback.
In the meantime while this unfolds, I am also going to join the UK CML site. I am also willing to join another site or newly created one as well if some of you who are more computer savvy than me know how to proceed on this.
Our discussion board with the wealth of knowledge and easy back and forth communication with one another by topic was an absolute Godsend when I was diagnosed and continues to be. It is a lonely place when receiving a diagnosis such as this one and the unpredictable journey with doctors who are not always up to date on new happenings in the CML field, the shell shock and disheartening reality of the pharmacological prices of the drugs even when they go generic, the politics of it all, and the fears of going on Medicare with a diagnosis like this and how the Medicare community suffers higher out of pocket expenses when they are trying to manage a lifestyle on less due to no longer working.
Trey's blog was a light in my darkest days of being diagnosed with this diagnose.I stumbled on it by accident on the internet thank goodness. Then, I learned from a wonderful nurse with LLS about this discussion board. I was hesitant to join because I am a private person, so I read it for a long time before I joined in. Then, when I joined, the whole world of CML opened up to the me in a new way.
I couldn't believe I had found Trey!! When I read his blog on the internet, I thought wow I would love to talk to him. Well, here he was on this Board! Imparting such solid knowledge and wisdom to all of us and helping us navigate our journeys. Then, there is Scuba who had shared so much valuable knowledge and help as well, including his generous posts about Dr. Cortes and his protocols, articles, etc. And, Buzz has helped navigate the world of Medicare for us, which I appreciate so much when it becomes my time to go on Medicare in the future. And, Chrisko has helped with better understanding of the pharmaceutical companies,the high prices of the drugs and the concerning realties about that. I can go on and name more who have answers on topics here that I have read over and over. Information I have taken back to my doctor to discuss with him. And, the times some of you have responded to my own questions on here, I thank you, because you have helped me in so many ways with different things. All of you precious people are a blessing.
I just needed to say this to you collectively.
I hope to keep communicating with you in this easy style of communication through a format that works well for us. Have a wonderful day!
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
Advanced Member
Posted 23 January 2018 - 12:40 PM
By chance, I recently found this support group - it's in the UK but maybe they would open it up to the world? https://www.cmlsupport.org.uk/forum/1
Advanced Member
Posted 23 January 2018 - 02:49 PM
I agree, Sandrea, this is the best forum I have found, too. I was diagnosed two years ago, right after the first time the LLS threatened to take it down. A few weeks ago I tried to log on and couldn't for hours. I hadn't checked in for about a week and panicked because I thought the LLS had finally taken it down - and learned just how important it is to me to have all of your support. It was not a good feeling (not being in touch with you all). But I agree with AdamJ, the time frame for setting up our own alternative forum is tight, so I think it might be easiest to just migrate over to the - next best? - UK CML support group: https://www.cmlsupport.org.uk/forum so that we at least don't lose touch with each other. I just signed up there as "campanula" and I hope to see my CML friends from this forum there, too.
Dx 2/16: PCR = 59.4%
BMB showed second translocation.
400 mg generic Imatinib
5/16: PCR = 0.88%
8/16: PCR = 0.04%
11/16 PCR = 0.01%
2/17 PCR < 0.01%
2/17 BMB results: all translocations gone.
6/17 PCR = 0.03%
9/17 PCR = 0.01%
1/18 PCR = 0.01%
Advanced Member
Posted 23 January 2018 - 03:01 PM
It would be interesting to know exactly how much it would cost annually to keep the forum in its current state. I can't imagine it would be more than few hundred dollars a year. This could be covered by a relatively small donation from those of us who are able to donate. I am guessing that $20-$40 from 20 us of would even cover it. I would be willing to donate $50 to get the ball rolling on it.
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