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LLS New Site -- Major Changes, But Are They What We Need?

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#61 jmoorhou

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Posted 22 April 2016 - 03:45 PM

Trey is right as usual. Some intern probably came up with the idea.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

#62 Red Cross Kirk

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Posted 20 February 2017 - 11:42 PM

I was checking out some ancient history on the LLS Blog and ran across this entry:

 

http://community.lls...scussion-board/

 

It looks like they've ceased posting to the blog since the new platform has come online.

 

I thought it was funny that the forums were being promoted and then a few months later we were fighting to keep them.

 

Shout out to Frogiegirl, Trey and Pam for getting mentions!

 

Just curious, did Lynne Smith ever post here in the CML forum? Here's one of her blog posts: http://community.lls...leevec-cure-me/


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%


#63 Frogiegirl

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Posted 21 February 2017 - 01:26 PM

Did not even realize that was written ;) thanks!

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#64 Silvertabby

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Posted 20 January 2018 - 07:44 AM

From Scuba: Posted 26 January 2016 - 09:49 AM
"Interesting ... I agree with Trey. Now I am concerned.

Hopefully LLS is taking our feedback to heart and will postpone or abort their planned move from the current structure to the new one. If not - Perhaps an alternative discussion board can be set up so proper thread control and topic titles can be continued."

After 2 years, it is now over and on February 1st this discussion board will become part of the LLS Community. I hope that it will work. If not, then I hope Scuba's idea for an alternative will be possible. I am thankful for everyone here. You have been a blessing and encouragement and have made this journey these past 4 years much easier. God bless.
Dx - 9/2013. IS QRT-PCR - 26.5
Gleevec 400 - 10/2013 to present
CCyr - 3/2014
MMR - 9/2015
PCRU - 12/2015
.01525 - 3/2016
.024 - 5/2016
PCRU - 8/2016
.015 - 11/2016
.015 - 3/2017
.015 6/2017
PCRU - 9/2017

God is in control. I will trust Him.

#65 Kali

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Posted 20 January 2018 - 11:14 AM

Hopefully this discussion board won't stop. Is it for sure that it will end come February?

The other one is not user friendly and it is very much inferior to this format that we currently have.

Our current format is organized and we can talk back and forth easily about our specific diagnosis.

Does anyone know how to start our own discussion board if they don't keep this one?

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%


#66 Red Cross Kirk

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Posted 20 January 2018 - 12:50 PM

From Scuba: Posted 26 January 2016 - 09:49 AM
"Interesting ... I agree with Trey. Now I am concerned.

Hopefully LLS is taking our feedback to heart and will postpone or abort their planned move from the current structure to the new one. If not - Perhaps an alternative discussion board can be set up so proper thread control and topic titles can be continued."

After 2 years, it is now over and on February 1st this discussion board will become part of the LLS Community. I hope that it will work. If not, then I hope Scuba's idea for an alternative will be possible. I am thankful for everyone here. You have been a blessing and encouragement and have made this journey these past 4 years much easier. God bless.

Just wondering where you received this information?  Is it credible?  Were we just going to be blindsided on Feb. 1?


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%


#67 pegetha

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Posted 20 January 2018 - 01:11 PM

Hey, I just popped in when I saw the title of this thread.  If you go to the LLS site, under "LLS Discussion Boards," you will see the following (I copied and pasted):

 

"The Discussion Board platform will be merged into LLS Community on Thursday, February 1, 2018 due to technical challenges and the need to better safeguard our community from inappropriate content.

We realize how important this platform is, and that many of you have relied on it for support for many years, so we are making every effort to help you during this transition.

Here's what you need to know:

  • Your Discussion Board threads (posts, comments) posted within the last 12 months will be moved to The LLS Community forums.
  • Conversations will continue within LLS Community. There are currently 7,000 patients, caregivers, and supporters engaging in discussion there now. LLS Community is better equipped to adapt to new technology and security needs.
  • The Discussion Board platform will remain active until January 31, 2018.

The Leukemia & Lymphoma Society (LLS) is committed to facilitating a vibrant online community where patients and caregivers can connect with one another on the topics that matter most to them.

For more than a decade, the Discussion Boards have provided support for a diverse group of patients and caregivers impacted by blood cancer. During this time, technology has continued to evolve, and online security has become more important than ever. Further, inappropriate content posted within the Discussion Boards and recent technical difficulties have led us to reassess the viability of the current platform. On Thursday, February 1, the Discussion Board platform will be merged into another online platform called LLS Community.

We see that many of you are already members of LLS Community. We encourage all Discussion Board members to join LLS Community where you can continue to engage with the connections you've made and provide each other with the vital information and support you rely on.

To help you with this transition, we will share a brief video tutorial and printable instructions in the coming week."



#68 Red Cross Kirk

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Posted 20 January 2018 - 01:20 PM

Thanks for the info.  Any idea when that was posted?


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%


#69 scuba

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Posted 20 January 2018 - 01:26 PM

Looks like this forum is coming to an end. If information from only the last 12 months is going to be carried over, a lot of good discussion will be lost.

 

Is there any way to download discussions (by author)? It would be good to be able to look back from time to time to see how a question was answered. 


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"


#70 scuba

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Posted 20 January 2018 - 01:37 PM

How about a forum like this one:

 

https://community.ma...mia/discussions

 

?


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"


#71 Red Cross Kirk

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Posted 20 January 2018 - 01:51 PM

Here's the email I sent to the LLS:

 

Hello,
 
I'm concerned about the announcement about changing the structure of the discussion boards.  If the problem is lack of resources to manage both the old and new formats, then my suggestion would be to drop the newer format in favor of the older, easier to navigate format. It seems to me that the older format is used more, and preferred by the majority of us afflicted with blood disorders.
 
Thank you for your consideration,
 
Kirk Tolstrup
 

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%


#72 Red Cross Kirk

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Posted 20 January 2018 - 01:57 PM

How about a forum like this one:

 

https://community.ma...mia/discussions

 

?

Looks like that could work.  But they spell leukemia a different way. :P


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%


#73 scuba

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Posted 20 January 2018 - 02:22 PM

Looks like that could work.  But they spell leukemia a different way. :P

 

That's so you know they are English and not 'merican.


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"


#74 Red Cross Kirk

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Posted 20 January 2018 - 02:31 PM

That's so you know they are English and not 'merican.

Yeah, well where was the Philadelphia chromosome discovered?  I think the Brits should spell it our way! :D


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%


#75 AdamJ

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Posted 20 January 2018 - 06:22 PM

Maybe this already happened and I couldn't see it over there in that poor excuse for a community,  but would it help if we flooded that forum with complaints about the format?  I posted a question confirming that this site will shut down. Although I don't post much, this forum literally got me through my diagnosis (and my minor liver scare at the beginning especially).  This forum saved me from feeling completely stressed about my CML and from feeling alone and I would hate to see it decommissioned in favor of something that I wouldn't have spent more than 2 mins on before seeking an alternative in my time of need.  Perhaps this forum was too active and LLS decided there was a need to scale things back?  It is horrible to think that they used donations to fund something that will replace this forum that has been so helpful to the very people they supposedly set out to aid in this mission:

 

"The mission of The Leukemia & LymphomaSociety (LLS) is: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families."

 

I think they forgot about that last part if they are really foisting that community on us and taking this one away. I am all for finding the cure (which is maybe the new focus of their mission), but in the meantime we have to live with CML and I believe this forum has been an integral part of coping with the disease for a substantial number of people.


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


#76 Red Cross Kirk

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Posted 20 January 2018 - 08:37 PM

I've received a response from the LLS.  I'm sharing it in an effort to encourage us all in our time of sorrow: :(  (I hope I'm not breaching any confidentiality.)

 

 

 

Hi Kirk,

 

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 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 will better safeguard our community from inappropriate content and provides the ability to update the platform as technology evolves.

 

We can assure you that LLS Community is easy to use and will be a place that you can continue to find support. To help you transition, we will be sharing a brief tutorial video and printable list of instructions next week. We hope you will help by ensuring all community members know about this transition, and sign up for LLS Community. You can play an important role in continuing the conversation and rallying the community to come together on LLS Community.

 

As a patients-first organization we are here for you, and are ready to answer any questions you have during this transition process.

 

Thank you,

Dr. Gwen Nichols

 

Gwen Nichols, M.D. Chief Medical Officer

The Leukemia & Lymphoma Society | www.lls.org

3 International Drive, Suite 200 | Rye Brook, NY 10573

 

From: Kirk Tolstrup
Sent: Saturday, January 20, 2018 1:49 PM
To: Mission Communications <MissionCommunications@lls.org>
Subject: LLS discussion board

NOTICE: This message, including all attachments transmitted with it, is for the use of the addressee only. It may contain proprietary, confidential and/or legally privileged information. No confidentiality or privilege is waived or lost by any mistransmission. If you are not the intended recipient, you must not, directly or indirectly, use, disclose, distribute, print or copy any part of this message. If you believe you have received this message in error, please delete it and all copies of it from your system and notify the sender immediately by reply email. Thank you.


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%


#77 M.A.

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Posted 20 January 2018 - 08:58 PM

I will write to them too. This is one of the only user friendly discussion forums I have ever found. So easy to navigate.

 

The brilliant search function has enabled me to find unusual combinations of issues, side effects and treatment options that only occur infrequently, so having the long history (not just the last 12 months) is invaluable. Sorry to single you out Scuba, but reading about your early myelosuppression in your actual posts from the time is one example of some very useful information that will be lost with the discarding of posts older than 12 months.


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


#78 M.A.

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Posted 20 January 2018 - 09:01 PM

Bare minimum, the LLS folks should do some proper user testing with regular site users such as Trey before giving the OK to a new format. And also should be careful about making assumptions on our behalf without asking us about what is useful and what is not. 


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


#79 Kali

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Posted 20 January 2018 - 09:29 PM

I tried to use the new site when it was started. But, I wasn't able to spend all the time that had to be invested to ready through lots of posts to try and find something that related to a question I had. There were no topics with the posts where you could just click on the topic and read the discussions and enter into the conversation.

 

I also noticed that when people did post questions and there were some replies, the whole discussion got lost in the mix of all the new posts that came. Then, to try and find the post again was so time consuming, I gave up.

 

There is some good educational pieces on there, but they are mixed in with all the posts. So, too became very time consuming to not only scroll through and see what all was there, but also added to the difficulty in finding posts of interests.

 

I know I am very very busy and just can't sit for long periods of time to hunt and search to simply ask a question and have some discussion or to look for topics that have already been discussed to read up on the answers.

 

If they don't keep this one and the new one stays the same, is there a way to start a new discussion board of our own? 

 

 

 

 


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%


#80 stpaddy

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Posted 20 January 2018 - 09:30 PM

It will absolutely be a huge loss if we can no longer access posts older than 12 months.  I routinely search topics and find very useful info in posts that are older than 12 months.


Husband dx March 2016; 400mg Gleevec started April 2016;

July 2016 PCR 3.06% 

Oct 2016 PCR 0.002%

Jan 2017 PCR 0.004%

April 4, 2017 PCR 0.001%

Reduced to 300mg Gleevec at end of April 2017 due to fatigue   

July 2017 PCR 0.001%

Oct 3, 2017 PCR 0.001%

Oct 18, 2017 PCR 0.003%

Dec 19, 2017 PCR 0.001%





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