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#41 Trey

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Posted 28 January 2018 - 09:20 PM

Buzz,

 

Dr Saltzman says he can migrate 3 years of old posts and believes he can also make them usable for continued posting of new comments.  I would say this is a major reason to migrate the old posts, to keep them usable for continued new comments. 

 

Remember in all of this, the choice of using LLS is not just for us, but there are about a dozen LLS Discussion Boards since LLS provides a place for many L&L type Discussion Boards.  We provide a certain amount of leadership on issues interfacing with LLS, so we would be abandoning the others.

 

Also, if we leave then there will still be a CML L&LS Board, but without any people capable of providing help.  I don't think we should abandon these future patients.



#42 Buzzm1

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Posted 28 January 2018 - 10:06 PM

Trey,

 

If Dr. Saltzman knew anything about discussion forums, and how they work, we wouldn't have ended up with that piece of crap that he wants us to use.  Calling that forum crap is an insult to crap.  I can post anything over there and anyone can respond to it.  But can you find it; i.e. is it searchable?  Three years of posts ... this should be interesting.  Hopefully this forum won't be deleted until we are fully satisfied.  I have zero confidence in LLS's ability to achieve any basic capability in that forum.  


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#43 Red Cross Kirk

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Posted 28 January 2018 - 10:16 PM

Trey,

 

If Dr. Saltzman knew anything about discussion forums, and how they work, we wouldn't have ended up with that piece of crap that he wants us to use.  Calling that forum crap is an insult to crap.  I can post anything over there and anyone can respond to it.  But can you find it; i.e. is it searchable?  Three years of posts ... this should be interesting.  Hopefully this forum won't be deleted until we are fully satisfied.  I have zero confidence in LLS's ability to achieve any basic capability in that forum.  

Buzz,  I've been thinking about how to do a work around on the new site.  I've thought that maybe we could make our own post topic titles until they get their act together. Maybe something like this:

 

TOPIC: Announcement: We will miss you Tex...

 

What do you think?


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

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%


#44 Busa

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Posted 28 January 2018 - 10:57 PM

It's been fun!  Later folks.



#45 Sandrea

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Posted 28 January 2018 - 11:31 PM

I agree with Buzz that we need to save this forum for search, if it will be "frozen" for new messages, there will be no problems with the service, spam and moderation. On a new forum search is a fiction. For example, how can I find messages from Trey for only certain period and containing only certain word? No way.
 
On new forum you can't see who is online, you go in a "dead zone", and is there anyone here? It is impossible to see when any person was online. If I look at a man's comments on his page, all the topics, where he commented, fall out wholly,  and how to find only his messages in this heap?
 
In general, very much frustrating, it even looks ugly, half page on the right is empty, for what? Ugh((
 
Kirk, "make our own post topic titles" it is good idea.

Diagnosed 1 April 2015. WBC 86000; b2a2 (p210) transcript 
on Hydrea for 2 months, then generic Gleevec 400mg (06/06/15)
CCyR in April 2016
 
12/22/2016  PCR:  0.49% (IS)           18 Month
03/29/2017  PCR:  0.68% (not IS)     21 Month
06/06/2017  PCR:  1.62% (not IS)     24 Month
06/20/2017  increased dose of imatinib to 600mg
10/30/2017  PCR:  0.15% (not IS)     28 Month
 

#46 Buzzm1

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Posted 29 January 2018 - 12:04 AM

Buzz,  I've been thinking about how to do a work around on the new site.  I've thought that maybe we could make our own post topic titles until they get their act together. Maybe something like this:

 

TOPIC: Announcement: We will miss you Tex...

 

What do you think?

Whatever works for you Kirk.  Go for it.


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#47 Buzzm1

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Posted 29 January 2018 - 12:19 AM

 

I agree with Buzz that we need to save this forum for search, if it will be "frozen" for new messages, there will be no problems with the service, spam and moderation. On a new forum search is a fiction. For example, how can I find messages from Trey for only certain period and containing only certain word? No way.
 
On new forum you can't see who is online, you go in a "dead zone", and is there anyone here? It is impossible to see when any person was online. If I look at a man's comments on his page, all the topics, where he commented, fall out wholly,  and how to find only his messages in this heap?
 
In general, very much frustrating, it even looks ugly, half page on the right is empty, for what? Ugh((
 
Kirk, "make our own post topic titles" it is good idea.

 

There's a lot to be said for this forum, with all the posts collapsed and only the thread header (topic) shown.

It makes it quick and easy to find the thread you are looking for.  Not so on the new forum.  It is ugly.

 

Sandrea, have you tested again in January?  I noticed the improvement in your October test and am hoping you will see another improvement.


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 BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#48 Sandrea

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Posted 29 January 2018 - 12:53 AM

Sandrea, have you tested again in January?  I noticed the improvement in your October test and am hoping you will see another improvement.

 

Thank Buzz, I go for blood work tomorrow, and I very hope for the continued improvement 

Diagnosed 1 April 2015. WBC 86000; b2a2 (p210) transcript 
on Hydrea for 2 months, then generic Gleevec 400mg (06/06/15)
CCyR in April 2016
 
12/22/2016  PCR:  0.49% (IS)           18 Month
03/29/2017  PCR:  0.68% (not IS)     21 Month
06/06/2017  PCR:  1.62% (not IS)     24 Month
06/20/2017  increased dose of imatinib to 600mg
10/30/2017  PCR:  0.15% (not IS)     28 Month
 

#49 Red Cross Kirk

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Posted 29 January 2018 - 10:25 AM

Whatever works for you Kirk.  Go for it.

Lemonade out of lemons.......


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

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%


#50 blueheron

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Posted 29 January 2018 - 11:01 AM

Thanks everybody, this has been such a comfort over the five years since dx. Too bad the LLS people got sold a bill of goods with the new crapware they're forcing on us. I don't buy the "serious technical issues" line at all. It's a message board, not a nuclear power plant.


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


#51 LouiseS

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Posted 29 January 2018 - 04:25 PM

I just checked out the CML forum that Trey mentioned run by the CMLsupport charity in the UK. CMLsupport.org.uk It's excellent. What is really annoying is that I bet LLS has a way bigger budget to spend than the UK charity. Often times simple and straightforward is best, especially when you just focus on patients' needs, as their forum shows. I wonder if they would be open to adding a new section to their forum for their US cousins ( and, in my case, expat Brits)?:)

In the meantime, here is my newbie but heartfelt plea to please stick around guys and sign up for the new LLS site, even just temporarily, so that there is way to stay connected after 1 Feb. Truly you were such a help to me when my husband was diagnosed and have been at every stage of the journey since. I would hate for others to lose out on all the expertise and wisdom here. So come on Buzz !

#52 M.A.

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Posted 29 January 2018 - 05:18 PM

I am searching for pages in the forum that have information that is relevant to me and I am saving them on my PC as HTML webpages. Same idea as yours, just a different process.

 

I am scouring the pages today for the signatures of everyone on Sprycel showing their responses at various doses. I realise we are all different in our response but there are some patterns... what an incredibly useful set of data! 

 

Thank you, thank you, thank you everyone, especially those of you who have their condition well under control but continue to post to help us newerbies. Your experience and advice is soooo valuable. I've signed up for the new LLS site under 'Isla D'. Long story. The site is truly hideous in its current form but I would love to keep in touch with you all.

 

The UK site is ok, nowhere near as useful and well laid out as our current site. No need for a separate US section surely? There are plenty of us here from all over the place. Having said that, I am _incredibly_ grateful to have access to some of the thinking of our US CML experts through some of you who are their patients. We got things anecdotally from you through this board that took years to show up in the haemtology oncology journals.

 

You are awesome.


CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

0.019  Jan 2018

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#53 ChrisC

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Posted 29 January 2018 - 05:33 PM

So it's come to this, has it? Well, it's been swell. Thank you all for your kindness and support, including LLS for hosting us this long (too bad we weren't profitable enough on this forum). 

 

Happy Trails to You!

https://www.youtube....h?v=XcYsO890YJY

 

Some trails are happy ones,
Others are blue.
It's the way you ride the trail that counts,
Here's a happy one for you.
Happy trails to you,
Until we meet again.
Happy trails to you,
Keep smiling until then.
Who cares about the clouds when we're together?
Just sing a song, and bring the sunny weather.
Happy trails to you,
Until we meet again.
 
ChrisC

Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#54 tiredblood

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Posted 29 January 2018 - 06:46 PM

Any chance of getting rid of or moving Medivisor?

#55 M.A.

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Posted 29 January 2018 - 07:54 PM

Wow - congratulations on your continuing PCRU ChrisC.

 

How amazing to go from initial WBC 459k to PCRU!

 

And to get to PCRU on only five months of 100mg Sprycel!

 

Here's my Fatboy Slim Praise You tribute to you all and this excellent forum technology

 

https://www.youtube....h?v=Ex1qzIggZnA

 

We've come a long long way together 
Through the hard times and the good
I have to celebrate you baby
I have to praise you like I should...
 
(Sheesh, feels a bit like the going down of the ship doesn't it... totally crazy)

CML diagnosed April 2016

Type One Diabetes diagnosed April 1980 (age 12)

 

BCR-ABL (IS)

46.77  April 2016

3.568  July 2016  

0.076  Oct 2016

0.016  Feb 2017

0.0079  April 2017

0.014  July 2017

0.019  Sept 2017

0.011  Nov 2017

0.019  Jan 2018

 

Sprycel

100mg April 29 - September 22

75mg  September 23 - October 28

50mg October 29 2016 to present


#56 rct

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Posted Yesterday, 08:34 AM

I think about all of you every day.  Mrs gets all of this from me to her, and I give back to here from her to me.  

 

The "new" stuff is just another pile of bunk in the guise of "security" which is a nice way of saying that they don't want to moderate and be involved in a forum.  All platforms are moving on to automated systems that grow each year in their ability to interpret written language and block the things on the offensive list.  The offensive list will include so much stuff as to make normal discourse impossible.  It is the way it is, and it is pretty darn sad if you ask me.

 

Good luck to all of you, I wish all of you the best from me and Mrs.  We will motor on, Sprycel is working so far and our fingers are crossed.  I hope and wish the best for all of you.  I'll go by the new place when it is the only place, but I doubt I'll hang long enough to get the hang of it.  If there is one thing I resent it is not leaving well enough alone, and this is and has been a pretty good example of that.

 

rct



#57 hannibellemo

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Posted Yesterday, 09:35 AM

Thanks, all, for your comradery, humor and excellent, trusted information!  And thanks to everyone who knows enough about this stuff to let LLS know what is needed on this Community site to make it workable for us.

 

I hope to see you on the "flip side"!


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>


#58 hannibellemo

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Posted Yesterday, 10:11 AM

Trey, on the new site if you click on the little gear icon that's just to the right of your name at the top of the page, a drop down menu appears. If you click on "conversations" you should be able to access that feature.  To the right of the "conversations" button there is a number. I'm showing a 0 there even though when I click through there are 3 conversations shown. Either I don't understand the meaning of that number, or it's a bug in the software.

RCK,

 

The number refers to the "new" conversations since you last clicked there. Once you've clicked the number goes away (the conversations stay) because they assume you've seen the new conversation, ergo it's no longer new. 

 

Sorry if this is old news, I just saw this and it is the one thing I know for sure how to do on this Community site.


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>


#59 Red Cross Kirk

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Posted Yesterday, 10:28 AM

RCK,

 

The number refers to the "new" conversations since you last clicked there. Once you've clicked the number goes away (the conversations stay) because they assume you've seen the new conversation, ergo it's no longer new. 

 

Sorry if this is old news, I just saw this and it is the one thing I know for sure how to do on this Community site.

Thanks Pat!


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

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%


#60 hannibellemo

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Posted Yesterday, 10:43 AM

Talk about anti-climactic, here I am posting again after a tearful farewell!  :D

 

Anyway, just noticed that on the Community site there are Private Groups. Is there a way, for those who know about this stuff, that we could utilize that for our purposes?


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>





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