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Coming over from LLS CML group in the U.S.

Hi - The Leukemia society in the U.S. is making changes to their forum such that the old style forum is being discontinued.

The new "community" forum is not as good their old one so I thought I would sign up here to learn and contribute and find a new "home".

I like that you allow thread creation with titles and search. It's so important to be able to look for key words and people that will exchange ideas with you.

I will update my profile and hopefully meet some new people here and encourage those I met in the old forum to come on over too!

I was diagnosed in May, 2010 and am currently PCRU on 20 mg Sprycel (Dasatinib). So far so good with no side effects I feel. 

Just a quick "hello". I am hoping this forum will work out. 

Hi there, and welcome!

Though we are UK based, this forum is for everyone around the world. It's a shame to hear that the Leukamia Society forum isn't as useful for you as before, but there are loads of seasoned patients here so I hope you can find what you need!


Hi David - thanks for the warm welcome.

The LLS new site is more like "Facebook" now with a lot of other information not originating from patients and their families. The old forum is similar to the one you have in the U.K. and I feel it will probably be a better fit. I suspect others from our old forum will be coming over here as well.

My own history is:

Diagnosed 10 May 2011 (100% FiSH, 155% PCR). 

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

Started on Imatinib 400 mg - didn't work and developed myelosuppression.

After drug breaks, re-started on 70 mg Sprycel - and developed severe/dangerous myelosuppression. Numerous drug breaks.

Re-started on 20 mg Sprycel and had less myelosuppression, but acceptable, and also had dramatic PCR drop..

I continue to take Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex. I routinely take vitamin D3 and K2 as well (for immune and arterial health)


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"

Two "undetectable" in a row ... you can't ask for much more than that! Sounds like it hasn't been plain sailing all the way though.


PS. We are also making changes to this web site which will go live soon. But fear not, we aren't meddling with the forum! We're just making things easier to use on phones, and that kind of thing.

Hello scuba and David Fitz!

I've just come over from the US site too (although I'm from Australia). Very grateful to have this UK forum to turn to. The US one has been great fun, incredibly informative and sanity-saving!

My current stats are:

CML diagnosed April 2016
Type One Diabetes diagnosed April 1980 (age 12)

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

100mg April 29 - September 22
75mg  September 23 - October 28
50mg October 29 2016 to present

Previously known as MA

Not sure how to do this so I'm just jumping in!  Another follower from the US LLS forum. I'm Pat and my particulars are:

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. 5/12; PCRU 2/15 and maintaining!

Looking forward to meeting new friends on here and offering support and information about my experiences!

Hi Isla and Pat - welcome here - our sanctuary!

There's a reason the U.K. has the zero meridian! It's the center of the world. Folks from Australia and the States are coming "home". (I have been to Greenwich many times - love it).

I like this site. I'm sad the U.S. site decided to complicate things. I look forward to meeting new people and learn and help.

Someone tell Trey to come on over.


Hello to all; I too am from the US LLS forum. Glad to be here.



Hi All - I'm campanula and here's my background: 

Dx: 2/16 WBC=55; PCR=59.4%

BMB showed second translocation (10:17)

400mg 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 showed all translocations gone

6/17 PCR=0.03%

9/17 PCR=0.01%

1/18 PCR=0.01%

I hope you don't mind us fellow CMLers hopping across the pond.

Tiredblood, also from across the pond.

Diagnosed 11/2013 and have had the best possible response, first to Tasigna (nilotinib), then to Gleevec. Reduced dose on both due to side effects. Now on Gleevec 100mg daily. I find out tomorrow if the 1/4 dose of TKI is effective.


Hello all,

trying to stay with this great group from the LLS site!  Your help has been amazing!  I was Lori's Okay there.  I'm hoping to follow this board and the LLS Community till we all settle somewhere.  

DX Sept 2011, now 2 months TFR!  Hoping to stay off Tasigna!!

Hello! I am from the US site as well. Diagnosed in June 2014 with CML. Started Sprycel 100 mg. But now on 50 mg. Barely detectable alternating with PCRU since October 2015. Looking forward to communication on this site.

I hope you don't mind us fellow CMLers hopping across the pond.

You are all more than welcome! I bet each of us wish we didn’t have CML and had no need for this, but while we do, the more the merrier. 


I have used both sites since my diagnosis, but admit that I have used LLS Discussion Board as my default. Will now use both for a while to see where things flush out with the new LLS Community site. Hello Sandy Craine if you are listening and I'm sure you are.  Hope all is well.  My history is below;



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

Hi everyone

Also moving over from the US site . My husband was diagnosed with CML end of Sept 2017. Responded v well on 100 mg Sprycel but hoping he can start dosage reductions soon to reduce some of its current side effects and hopefully avoid the harsher ones completely. 

I am from the UK ( ex pat 11 years now) so am looking forward to some good British humour on this site as well as valuable info I hope. I am also interested to hear what drugs the NHS is funding for CML patients. 



What is your husbands PCR status? blood counts (particularly neutrophils)?

If his PCR is below 1% and his FISH level is zero AND his blast counts are zero, he could very well reduce his dose from 100mg.

(British humor?? You mean the French)

Hello everyone was a long airplane ride but I made it from the US, Was following the LLS Forum, plenty of useful information and great people sorry they will be discontinuing it.

11/2016 PCR 38.3 BMB

12/2016   100 mg Sprycel started

03/2017    PCR  3.854 IS

06/2017    PCR  1.467 IS

8/2017      PCR  0.947 IS

11/2017    PCR  0.182 IS

02/2018    PCR Scheduled           

Asked for a dose reduction at 11/2017 with doc, with no avail, so down the road we go.



.... I wonder if we are going to have immigration problems here? I mean we're Dreamers now! 

Hi to all and particularly Ted... yes I'm here and WELCOME to all new members wherever you live.

As David says- our group is UK based, but we have always had an international vision and welcome all CML patients worldwide. Our USP is that we are a patient developed and patient run group- this is our strength and over the years we have defended our right to to remain independent from professional run patient groups.  Personally, I have reason to be grateful to the US patient run groups that appeared online back in '99 when I was first diagnosed. Through one of those online groups I heard about a new drug therapy that was in phase 1 trial and having amazing results- and my doctor, Prof.John Goldman, encouraged me to travel to Portland and enrol in the phase ll clinical trial for imatinib with Dr Brian Druker. 

Ted...I  hope all is well with you.



Hi Louise, welcome!

The NHS funds all TKIs these days ... big improvements in the last year under the appropriate circumstances. Of course generic imatinib is also favoured here - hard to argue with the price!


Hi Louise,

The NHS currently fund all 5 TKIs - depending on your response to imatinib (now generic) and/or whether you have a complex disease picture at diagnosis. 


Hi Scuba 

I checked back to his Jan tests and I can’t see a FISH test. Also can’t see any note of blasts percentage. I think at diagnosis it was at 4%.

Abr/ Bcr was at 0.74 % reduction from 89% in Oct at initial diagnosis. 

WBc was 4.4 down from 220,000

red blood count 4.76

hemaglobin 12.6 ( little low)

hematocrit 38.7% ( little low)

rdw 16.8%

neutrophil is 41% ( should be at least 49%)

abs neutrophils 1.8 but should be at 2 

but all blood work was huge improvement on 3 months prior.


Tumeric is helping his itchy, swollen eye lids. Thx. 

Seeing oncologist tomorrow . Taking along the Talpaz paper you recommended. Hubby not sure about arguing for a dosage reduction yet . thinks better to hopefully get to 0.1 first. But I have told him you reached this on 20 mg.


That’s great. I had read there were some caps. 

Nothing makes you appreciate the NHS more than when you are dependent on work based medical insurance and you are diagnosed with a chronic condition! 

Hi Louise,

Sprycel is potent especially at 100 mg. Your husband's blood cell counts inform  he is very sensitive to Sprycel. The good is that his leukemic cells are sensitive to it (and die). The bad is his good cells are suppressed by it as well (red and neutrophils).

He could consider lowering his dose from 100 mg to 70 mg until he reaches 0.1%. - which he is going to achieve quickly I predict. Once he crosses that threshold, dropping to 40 mg or even lower is possible.

I am on 20 mg Sprycel and PCRU.



I recognise both scuba and hannibellmo from the LLS forum, welcome to you!! - can you get Trey to join in too? Glad you've found this forum, but it's a shame LLS forum has changed format as it was a really useful resource.






still trying to figure this new place out!

Hi Scuba and everyone,

I'm also from the old U.S. discussion board.  My old name was SUE, but that was taken, so now I'm Sue2.   My cml history is

  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

Hoping to see some old friends on this board and learn from some new ones as well.




Good Morning, fellow refugees from the US!  This is just a test message to see if I have properly registered, after some help from the nice folks here.  Am I coming through, as kat73?

Hi Kat - you are coming through loud and clear. Welcome to the U.K.

The organizers here (David, Sandy, et. al.) are fantastic. They run this site from a patients perspective - designed by patients, run by patients - for patients. The LLS in the U.S. has a lot of "doctors" leading it and they are tied to the pharmaceutical company's and together "we" the patients are lab rats. That's my editorial take on it. The LLS site is now organized as a data collection system for the industry. That role is important I suspect, but the way it was done has taken the patients need for discussion, learning and participation a back seat. Hopefully they will adjust and improve the site back to its forum roots. But in the mean time, I find the new faces here refreshing. The issues are the same (side effects, drug response, cure, future, friends) as in the U.S. and I suspect the world over. It's good to have a single place where we all can find each other, educate each other and share life stories.

I haven't met Sandy yet, but I hear she is a female Trey. I hope not for her sake! I asked Trey to come on over here and participate, but I suspect he is being a bit parochial in not wanting to be here in order to focus on LLS improvement. 

I regret losing all of my posts from years past where I posted many links to articles on nutritional support, key ASH conference papers and similar. I have links to them on my computer, but won't re-post them unless topics warrant. It's like re-inventing what we have learned over the years managing CML. I am hoping that Sandy and David will introduce us to what's been happening here and the issues they face managing CML. I am already learning quite a bit about their NHS. 

It would be good for them to add a "signature line" so we can have our treatment history listed for others to readily see as they comment.

All the best,

Hi Scuba,

Picking up on the signature idea, this is something we've thought about in the past and is on the long-list of things to do. We probably won't implement it as a signature per-se, but instead perhaps as some sort of "user biography" feature where you could share as much or as little as you'd like (which country you live in, where you're treated, treatment history etc.).


The idea came out of discussions with people when they asked for help in understanding their lab results. As you know, interpreting results needs historical context.

A PCR of 1% is much different if it occurs a month after diagnosis and treatment vs someone taking a TKI for 3 years. Having a ready lab history below their post lets anyone responding know the context and can respond better.

On a side note - it will be interesting how many folks come over from LLS now that the site has changed. 

Hi Scuba 

really good oncologist appointment today. He wants one more abr test in 2 months then we will talk about dosage reduction. Much more positive on that topic than last time so I was really pleased.  I talked about the  Talpaz paper and he was really eager to  read it so I left him my copy. Also mentioned what you had said re sensitivity to TKI impacting red cells as well as the leukemia ones so he is going to keep a close eye on his platelets in particular. 

Thanks as always for the help. 


Sandy, would that have been Jerry's site, anewcmldrug? (Or something very close to that?) I actually used that site more than the LLS "Living with CML" at the beginning but then Jerry got sick and was unable to keep it up.

Thanks for the warm welcome!

Hi Sandy. I am doing very well as you can see from my history in the above post.  Down to 150 mg Tasigna for nearly 5 months and have been PCRU during that time.  Remaining side effects are nominal compared to what they were when I was on higher doses and include mild dry mouth and occasional benign premature atrial contractions (used to have tons and tons of these on higher doses).  My skin has been clear (no cancer or precancerous lesions since last April) and no swollen salivary gland incidents since last August. It is truly a blessing.

It was you and Scuba who gave me the courage to fight hard for dose reduction and I will forever remain grateful to both of you.  I am glad to see Scuba on this site and hope Trey from LLS site will bounce between the 2 sites as well.  Imagine a patient forum with Sandy, David, Trey and Scuba all commenting and providing perspective - wow.

But yes, I am doing very well and I hope you are too Sandy. 

Hey, scuba! Great to have you here. I must admit that i didn't like the changes in LLS boads. They changed a winning format to a "modern" one. You're a great acquisition for this group!!

Thanks Lucas!

I wish I had been more active on this site years ago. I forgot it existed (even though I signed up early). I am learning more about the NHS in the U.K. and how it manages people with our disease. I tend to focus more on the science and nutritional aspects and will post accordingly. 

I will miss my debates with Trey. He mentioned he intends to participate only on the LLS "community" board. Hopefully he can sway the organizers to change it to a more natural format like the organizers here have done. 

Regardless, it's good that patients and families have a place to go to find information, assistance and emotional support as we all deal with CML. For me, I like the U.K. CML support group and hope to contribute as well as learn. 

I agree with you, scuba. I'm active in both sites and miss the old format of LLS and trey. There are great guys here too, like sandy, david and nigel. Don't know if you remember, but i live in brazil and also had the trisomy 8. My pcr was around mmr 4.5 for two years, but the most recent was 0.022%. hopefuly, just a blip. Cheers!

Hello, followers from the US LLS forum, I need to know the opinion of the members old LSS forum about one question... I have save a copy CML subforum of LLS forum (there are more than 6000 topics, everything looks as it was, only search doesn't work) and I can put it online if it's interesting and needful for someone, and if so, then here are a few questions: first - will I not violate the rights of the LLS? The second question, this forum is your creation, contains a your information and it will be publicly available, so you must decide - is it worth doing so? Here's how it will be look - (I uploaded only the last few topics, for example) The first link at the top - our forum, below - all topics on one page, for possibility to search at least by title or theme creator. So, what do you think about it? Do you need the archive of our forum in this format? Can I do this? (or "Should I do this?" Sorry if I wrote it is not clear, it's quite difficult for me to choose the words using Google's translator).

Sandrea - This is awesome!

Our old themes are in one place again. I can at least search by theme owner and recall topics.

I don't know who owns what, but as it is about patients helping patients, I don't think anyone should mind. And members of this forum can at least search for keywords and see if a title reflects their interest. I know there was a lot of good discussions going on. 

It's good it goes back almost 10 years!

Thank you.

Yeah, what he ^ said.


Sandrea said, "Should I do this?"

My reply:  Yes!!! Please do this!

Well, I did it. And, how to inform other members of old forum about this?

Thank you very much for doing this Sandrea. It is very much appreciated. As for communicating this to former members, I think this thread is probably the safest way. If there are people over there (new LLS forum) in particular that you would like to inform, I would suggest sending them a PM.  I think most people will become aware of it over time.

Sandrea - This is terrific!  Thank you so much!  One just has to have a little patience to find the vaguely remembered item, but at least it's there!  So much information - what a shame it would be to lose it all.  Thank you for doing this.


It was so easy to do a search user my browsers "find" function on just about any topic or any individual.

Sandrea gets a GOLD star!

To our friends who have been part of the U.K. Forum - try loading the link Sandrea provided and then do a search using your browser on just about topic you have interest. It's amazing what's out there.

Can we do the same with the U.K. CML group?

Scuba - I'm not computer savvy.  I found Sandrea's list and bookmarked it, which is the only way I know how of saving things to find whenever I want them.  How do I search the list?  Is there a different way to put the list into my computer for retrieval?

Depending on which browser you are using - they all have a pull down menu item labelled, "find" or "find in page".

Click on that and then type in the find field whatever you are looking. That's how you can search the contents from the link Sandrea supplied.

For anyone who just feels like nostalgically browsing the forum as it used to appear (without search functionality, although the box is present), have a look at this link:

It seems as though Sandrea was able to capture the site just before it went down. Quite impressive.  Theoretically we could use this to rebuild a searchable site at some point by parsing each of the files.  For now I think the index page will be sufficient for most things.

If anyone is looking for better search functionality (full text) it is possible to download the full contents of that site using a spider. I like HTTrack, which I believe is what Sandrea used to originally capture the site from LLS. Once it is on your local filesystem, you can search it like you would search any other text documents.



AdamJ, you're right, I used HTTrack, first I looked on the Internet - Is it possible to download the whole forum? 
Then I tried several programs, but only this one worked. The funniest thing is that I have nothing to do with computer technology or website creation, I work in the virology laboratory, but I was so shocked that my favorite forum will disappear, that for a week I mastered several programs in an attempt to save it. I've never had a website, it's the first time for me to learn about hosting, domain names, how to upload all this to the host (more than 40,000 files), in fact it was interesting, I learned a lot. If you notice, I removed the LLS logo and its name from all pages, which also required savvy with such a large amount of files.

Another theme - I have good news, after 29 months of treatment I finally reached the MMR, yesterday I had an appt with my Hem and received a PCR result, made in November, this is 0.057% IS =) Yippee! Below is my history:

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

04/26/2016  BMA:   normal female karyotype with no chromosomal abnormalities
12/22/2016   PCR:    0.49%    (IS)           18 Month
03/29/2017  PCR:    0.68%    (not IS)   21 Month
04/12/2017  BMA:   clone with deletion of the long arm of chromosome 16 was detected.
Karyotype: 46,XX,del(16)(?q22)[5]/46,XX[15]
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  (Local commercial laboratory)
11/17/2017    PCR:    0.057%  (IS)          29 Month  (Certified laboratory)

Sandrea - You and your brain absolutely amaze me!  How you could learn all that, use it, and retain it is just so impressive.  I used Scuba's instructions on how to search (I used the word "bosutinib") and found so much information, most of which I had read at one time, but the memory had dimmed.  This was just so, so, SO helpful to me, I just can't thank you enough.  If my computer were about to be destroyed and I could only save one thing it would be that cache.


Congratulations on your PCR result and reaching MMR. That really is fantastic news!  I am very glad to hear that the increased does of imatinib seems to be doing it's job.  I hope that your side effects are minimal and continue to stay that way!

I am also quite impressed that you managed to not only copy the old forum, but also edit it and put it back online for the rest of us to view. I had certainly assumed that you worked in the IT field. To learn all of that stuff in such a short time and put it to such good use is quite amazing.  Thank you again for your hard work.  I am quite sure that many folks who depended on that forum over the course of it's nearly 10 year existence appreciate it.

Good news on reaching MMR!  Hopefully I'll be back there too on my next PCR.

On another topic, I believe a post I made on the LLS Community site was deleted (censored) by the admins today.  Today on the home page of LLS Community they asked the question:

"Feb 16 - The LLS Community platform is easy to use.

Strongly Agree




Strongly Disagree"

I voted and then thought I'd post something from two years ago.  Here it is:

Title: Pitchforks and Torches mikefromillinois - Advanced Member Posted 25 January 2016 - 12:10 PM LLS announces a "new" forum and many folks "virtually" rally to take up pitchforks and torches and storm the castle where the evil Dr. Frankenstein is creating the monster. Just like in the movie. I've been coming here for several years - back to the days that it was the "old forum". I am also a regular visitor at a few other special interest forums. It seems that ALL forums regularly change their format. Not sure why that is but my guess is the administrators choose to make enhancements to the product they are hosting. Whenever a site changes a forum I have grown used to I am aggravated because I'm an old dog and I don't really like to learn a lot of new tricks. I get comfortable with what I know - I'm not crazy about change. But eventually I adjust to the changes and usually end up liking the "new" forum more than the old one. That's just me. I keep waiting for someone to step up and defend LLS in this matter. Sadly that hasn't happened. So I will say a few words. We pay NOTHING to come here and learn about our CML. NOTHING. And I think that most here would agree that we learn more here than in the offices of our doctors. LLS pays to provide us with this free service - hosting a site like this costs money. They ask for nothing in return from us. Yet the attitude I see here - and the lack of GRATITUDE - is much along the lines of when someone pays a lot of money for something and then feels that they have not gotten their money's worth. I also see what smacks of entitlement in the way some people are complaining how they are being "done wrong". I can relate to the idea that LLS maybe should have sought more user input before effecting any changes - BUT - I have also witnessed many times the old adage that if you want to put a good idea to death...just send it to a committee. At the end of the day it is their site and their money. They don't have to ask our permission for anything. And in my opinion, to attack them for exercising their right to make changes is out of line. TO LLS: From the heart, my sincere THANK YOU for all of your efforts over the years as you have provided me with a place to learn about my disease. I will always be grateful and will keep coming here no matter what format you change to.

I'm not sure why they deleted my post. I checked later, and it looks like they deleted the archived post that I had originally quoted from.  Very strange. Here's the thread in it's original form (Thanks Sandrea):

Hi Scuba,

I tried to check in on the old forum and found the change and did not like it. I posted looking for you and Trey and Kirk sent me a link to this forum (THANK YOU KIRK) We spoke online in the past and pmd about sprycel dosage. My onc did not want to go to 29mg but rather changed me over to bosulif 200mg per day. My bcr/able is responding and I am doing overall well on the drug. 

thank you for finding this group.


Charles - Glad you're here!  I'm here, too, although I am also attempting to stay with the LLS group as well.  I don't know if you know this, but Trey is only over there on the LLS group.  I don't like the site anymore either, but Trey is trying to get them to make improvements.  The UK experts here are wonderful.

Can you tell me about your experience so far on Bosulif?  I'm being pressured to move to that drug from Sprycel which has given me pleural effusions.  I fought hard to try 25 mg first - onc NOT happy.  I just don't have faith that A) something that ONLY inhibits (besides BCR-ABL) SRC will work better than "Kitchen Sink Sprycel" and B) that something that inhibits SRC, which causes cell fluid balance disruptions, isn't going to continue to give me pleural effusions.  And then, to suffer through a year of diarrhea, on top of all that - - - no thanks!  Any encouraging words?  Or just info? 



Hi Charles,

My sons mother is a "Norman" from the Norman ancestors of England - 11th Century. Her great great grandparents were married in St. Pancras church. So in a way, I find myself coming home to this site in the U.K. We even visited the church the day after the London bombing in 2005 and met the Vicar who married them! (just kidding - it was amazing how old that church is - and they call it the 'old St. Pancras church').

The LLS made a big mistake in changing the LLS forum format without sufficient input (or despite) from forum members. To be honest, it looks and behaves like it was designed by computer scientists for computer scientists. I don't post over there much and find myself over here for a more global perspective any way. Hopefully I can contribute.

I asked Trey to come over and at least introduce himself, but he is very parochial. I believe he feels it necessary to keep trying to help LLS.

Regarding your switch to Bosulif, I hope it works well for you. We are all different in our drug responses. I continue to do well on 20 mg (PCRU) and  I am experimenting with fasting as a way to coax leukemic stem cells out of hiding so they can be targeted by Sprycel. If nothing else, I'll lose a few pounds. A pound in this case is not the same as a Quid.


Hi, all.  Just found my way here too from LLS.  Got the same user name so happy about that.  DXed October 2016. I'm currently on Sprycel 40mg as Gleevec stopped working and the  side effects were awful, then moved to Tasigna but that increased my pancreatic enzymes and caused me to lose feeling in my legs, then to 50mg of Sprycel but had severe headaches and dizziness and now down to 40mg (just started yesterday) so hopefully that will alleviate some of those.  Last PCR was 0.044 on Feb 8.  

Anyway, enough about me - just glad to recognize some names here and look forward to getting some great advice when needed from our UK cousins!


Liamsdad - it is very normal to have headaches when first starting Sprycel. They will fade in a few days. I take Curcumin which helped to minimizing headaches I initially had.

I can live with the headaches - been 3 months now, but the dizziness was causing a lot of issues at work and I have to drive 2 hours to and from work each day and I was worried if I got dizzy driving -not a good idea.  I also have been taking curcumin with bioperine - a tip I probably got from you on the LLS site!  Anyway, Dr. Druker said if the dizziness doesn't subside and my numbers don't go down he wants to try bosulif but I would rather not.


Sprycel can cause an acute magnesium deficiency. Dr. Cortes suggested I increase my magnesium intake (which I do by supplementing) as I was starting Sprycel to avoid these side effects.

It certainly worked for my leg cramps which went away immediately after I started to supplement. I never had the dizziness you described, but then again I take Magnesium every day.

The link above documents how magnesium deficiency can lead to dizziness. Consider taking a magnesium supplement (I take magnesium taurate 250 mg per day - avoid magnesium oxide).

Let us know if it worked for you.

(p.s. taking magnesium right before sleep and then again when you first wake up is best. Also magnesium deficiency rarely shows up as a low blood level. It is low in our organs and muscles. Our blood has to maintain magnesium in a tighter range or else we are in trouble (same for potassium, calcium and phosphate) - the muscles and organs are storage for magnesium which is given up when needed to keep levels steady in the blood.)



Thanks, I did take it on Gleevec for the muscle cramps but didn't know it could also cause dizziness.  I'm going to restart tonight and I will let you know.  Thanks for the great tip!

Hello Scuba! I just registered for this site too. Glad to try something if it's better than the new format that we had to use.

Im here, too.  You might be seeing a lot more of us.  The LLS forum is an abomination.  We'll try and be good guests.

There are no guests ... only equal members 😀 !




I'm not so sure David about equal members ... according to George Orwell, that famous English novelist, didn't he say that some members were more equal than others?

Hi Scuba and All!  So glad to see you here. I am also just coming over from the US LLS site. So dissappointed in their dumping of our discussion group. I am already liking this one! Hoping to see many of our old friends here.

I hope our English host don’t mind us Americans
invading their CML domain.
We promise not to drink the tea. We are coffee people.
Lotsa cream. lotsa sugar and anything else you have.

Thank you all.


After thought...

I have friends that put toothpaste in their coffee and call it brushing their teeth.

Just trying to have some fun.