The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

£3M Award for Pioneering Scottish Trial for Leukaemia (CML)

BCR-ABL1 levels increase in peripheral blood but not in granulocytes after physical exercise

Pepsi or Coke? Influence of acid on dasatinib absorption

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David Fitz on 11 November 2018

Category: About CML

Replies: 4

Last updated: 19 November 2018

PinnedUPDATE-UCLH web-based consultation study dates have been extended
by AlastairC (Nov 13)

David the link now works fine.

by David Fitz (Nov 13)

Could you try again now?

by MJP (Nov 12)

Denies access

by chrissie (Nov 12)

David, it's refusing me access to the link
Chrissie
Category: About CML

Replies: 5

Last updated: 19 November 2018
Felix on 15 December 2018

Category: Children & young people

Replies: 0

Last updated: 15 December 2018

Am I becoming resistant to Imatinib ?
by Felix (Dec 15)

Hello all,just had my recent BCR ABL test and it’s on the up, I was diagnosed in December 2017. May was 0.76%, August was 1.92 % , I was on antibiotics so thought this might be the cause of
Category: Children & young people

Replies: 1

Last updated: 15 December 2018
Ray Sell on 1 December 2018

Category: Uncategorised

Replies: 11

Last updated: 15 December 2018

BCR-ABL1
by alliswell (Dec 15)

Sorry about my first post , i misinterpretted your PCR results.
According to scuba ,
In your post above, your dominant b3a2 mutation is at 0.1123%. That is your CML percentage for all

by scuba (Dec 14)

Hi Ray from USA ...
It's good you are asking questions and feel more confident in learning more and deciding your own course of action.
Your doctors are correct, you are doing very well - but

by Justine (Dec 14)

Hi Ray, I was diagnosed in April 2017 and am also on imatinib ever since, 400 mg daily. My oncology care here in Western Montana is very good but I went to Dr. Druker in Portland OR last month for a

by Ray Sell (Dec 13)

Alliswell
Thank you for your response. I have according to lab results BCR ABL1. I'm not exactly sure what b2a2, b3a2 and e1a2 really mean and that is on my list for the
Category: Uncategorised

Replies: 12

Last updated: 15 December 2018
Alaina on 15 December 2018

Category: Uncategorised

Replies: 1

Last updated: 15 December 2018

Rockstar Eyeballs
by Justine (Dec 15)

Yes! My eyes are also always swollen. My mom says it looks like I've always just been crying. Very frustrating! That is the main reason I have told people that I have this condition. It's a

by Alaina (Dec 15)

Does anyone else wake up with bloodshot eyes? Every morning mine look as if I've drank an entire bottle of red wine. So embarrassing. Anything I can do to remedy this without making it worse?
Category: Uncategorised

Replies: 2

Last updated: 15 December 2018
blueyes74 on 13 December 2018

Category: About CML

Replies: 6

Last updated: 15 December 2018

Treatment Free Remission
by DawnD (Dec 15)

Great News Blue!!! Congrats!! I am hoping eventually for the same:):)

by blueyes74 (Dec 13)

I never really had cramp. My toes used to curl up when cold now and again but that was in the early years.
I still get cold hands and often think they're cold when infact they're warm

by Mick E (Dec 13)

That must be a massive relief for you and your family! 😄

by AlastairC (Dec 13)

Fabulous. I am a few weeks behind you - 3 month post stopping blood test in the middle of January. My greatest change - no cramp!
Category: About CML

Replies: 7

Last updated: 15 December 2018
JoeyD on 13 December 2018

Category: Treating CML

Replies: 4

Last updated: 13 December 2018

Side effects of nilotinib
by Mona Gard (Dec 13)

I was diagnosed in August of this year but my head itching started before I was diagnosed. After I started on gleevac it stopped. Me personally thinks it was a symptom of the cancer. A

by cmljax (Dec 13)

Hi - I've been on Nilotinib for nearly 27 months - started on 600 mg and had many, many side effects - one was itchy scalp caused by folliculitis, a common side effect of nilotinib. These were

by JoeyD (Dec 13)

Thank you so much for prompt reply. I have tried 2 shampoos but will give Tgel a go!

Had you been on Imatinib first or did you go straight on to Nilotinib? I had several side effects,

by CM-elon (Dec 13)

Hi there...I was diagnosed at about the same time and had a similar issue. Felt like tearing my hair out at times and it kept me awake at times in the night. I'm not sure if it was coincidence
Category: Treating CML

Replies: 5

Last updated: 13 December 2018
scuba on 7 December 2018

Category: Treating CML

Replies: 16

Last updated: 13 December 2018

Curcumin & Vitamin D - interesting research results (from ASH)
by scuba (Dec 13)

Sandy,
Here is the video documenting optimum levels of vitamin D I referred to in an earlier post.
https://youtu.be/z6M1ARtCi6c
The entire video is a great education on vitamin D overall. The spot

by scuba (Dec 13)

Sandy,
It is so sad to see people suffer needlessly when a simple solution like raising ones vitamin D level can do so much.
I have not had a flu or serious cold in more than six years since raising

by sandy craine (Dec 13)

Hi Scuba,
yes, I take your point about the general guidance for D3 levels but.... as I said.... personally I find I have responded better to a higher level which is why I currently like to keep

by scuba (Dec 12)

Sandy,
I would be cautious in raising vitamin D level much above 80 ng/ml. Research has shown (will post link when I find it again!) that ideal level for vitamin D in the blood for cancer and
Category: Treating CML

Replies: 17

Last updated: 13 December 2018
andycat on 24 November 2018

Category: Drug-drug interactions

Replies: 9

Last updated: 13 December 2018

cml drugs
by andycat (Dec 13)

HI, Thank you for your reply. You are lucky that you've had no nasty side affects on changing tabs. a fellow in our cml support group is the same but my friend Ann + I have had

by sandy craine (Dec 1)

We are all CML patients on this website---- including David. Some of us have had CML for a long time and wish to help others with CML, this is why this website exists.
If you are struggling

by RC Kirk (Nov 28)

It's good that your doc agreed with reducing the dose to 300mg. Hopefully it will alleviate your side effects. In my limited experience, imatinib has more benign side effects than

by AlastairC (Nov 27)

Hi. I was using the Wockhardt generic imatinib for the last year until I recently stopped taking them following the Destiny trial protocol. I had another generic before that, both through Alcura.
Category: Drug-drug interactions

Replies: 10

Last updated: 13 December 2018
Felix on 10 December 2018

Category: Getting help

Replies: 2

Last updated: 13 December 2018

Personal Independance Payment
by Felix (Dec 13)

Hi David ,thank you for taking the time to reply.Ihave had a quick look ,trying to get any benefit is difficult somebody always gives you a hard time so you just give up,but when you are ill it will

by David Fitz (Dec 12)

Hi Denise,
Sorry you haven’t got much of a response here - perhaps a topic people don’t have much experience with.
Have a look at the “CML UK” Facebook group. There are

by Felix (Dec 10)

Hi all ,Has anybody applied for this benefit and been successful. I am nearly 62 and 1 year since diagnosis,I don’t have a job now I just haven’t got the energy ,and with all the
Category: Getting help

Replies: 3

Last updated: 13 December 2018
Mona Gard on 10 December 2018

Category: Uncategorised

Replies: 2

Last updated: 13 December 2018

Stomach bloating
by Mona Gard (Dec 13)

Thanks John. I guess ill find out for sure at drs visit. I have a hernia and gallbladder issues for years so maybe meds interfering with that. Im only 4 months since dx so still pretty nervous on

by johnw1001 (Dec 11)

Hi there,
Gleevec or imatinib is well known for the GI-gastro intestinal issues associated with it and currently I am going through one of those episodes where it is necessary to be very careful

by Mona Gard (Dec 10)

Is this another side effect to gleevec? Stomach bloating? I have a Dr appt end of Dec with my family Dr but was wanting your thoughts on this. Thank you
Category: Uncategorised

Replies: 3

Last updated: 13 December 2018
Riggered on 28 November 2018

Category: Treating CML

Replies: 5

Last updated: 12 December 2018

Had achieved MMR but lost it
by alliswell (Dec 12)

as i said in my thread
maybe this will be useful for other patients , especially if they were just searching just pcr results for a relief like me months before . i will update after every

by Riggered (Nov 29)

Hi Kat,
Yes we sure do love the trend....when its downward. Like you say.....will see what the next couple of PCR's look like.
Onward to .00000

by Riggered (Nov 29)

Thanks Scuba....
I had my Vitamin D level checked about 3 months ago. It was 74 ng/ml
My daily supplement list:

"Liquid Vitamin D3 with K2". 125 mcg D3 (as Cholecalciferol),

by kat73 (Nov 29)

Riggered, no need to get upset over the difference between .1 and .15 - statistically insignificant! It is in the nature of the test to produce upward (and downward, but of course, we always
Category: Treating CML

Replies: 6

Last updated: 12 December 2018
fiona vaughan on 6 December 2018

Category: Uncategorised

Replies: 11

Last updated: 12 December 2018

frequency of follow up? What’s normal?
by alliswell (Dec 12)

@fiona
your concerns are well founded..
as RC KİRK mentioned , for the first two months monitoring should be more frequent. at least for CBC.
according to prescribing information of TASigna

by AF (Dec 7)

I am treated in Middle East and I have the same problem. I always have to try really hard with my doctor to get a pcr test. Most recently I have come off my medication and doctor still refuses to do

by David83 (Dec 6)

Hi Fiona,
Just a quick one to add from my experience and a scenario where I’ve been lucky I’ve been monitored closely.
It’s good to make sure you keep an eye on your complete blood

by David Fitz (Dec 6)

Fiona,
One thing worth knowing about PCR tests is that they are difficult to compare between different labs - even when you factor in the "international standard".
So ideally you
Category: Uncategorised

Replies: 12

Last updated: 12 December 2018
sandy craine on 5 December 2018

Category: Treating CML

Replies: 17

Last updated: 12 December 2018

20 years since diagnosis
by Mick E (Dec 12)

Pleased to hear you have got to the 20 year mark!! Very reassuring to read.

by sandy craine (Dec 10)

Thanks to all for the good wishes... and yes I am planning to stay around for at least another 20 years!
John, yes you are right, I did go on to have a transplant in October 2003

by Rick B (Dec 8)

Great to hear and very inspiring to us all!

by Vikram (Dec 7)

CONGRATULATION SANDY , I belive in morden medical science and GOD. I HOPE ....... CML CURE IN NEAR FUTURE ....
Category: Treating CML

Replies: 18

Last updated: 12 December 2018
Nimbus2 on 9 December 2018

Category: Uncategorised

Replies: 2

Last updated: 12 December 2018

Generic Imatinib Compared With Gleevec in CP-CML: Patient Outcomes Across 3 Countries
by sandy craine (Dec 12)

I am not at all sure about this study...
"Lastly, the current study may not have been designed to resolve all potentially confounding prognostic factors that could influence the final outcome

by RC Kirk (Dec 9)

My personal experience with generic imatinib is that it didn't give the consistent response I was experiencing with Gleevec. After four and a half years with stable PCR scores on Gleevec

by Nimbus2 (Dec 9)

This worrying article comes at the very top of a Google News search today for imatinib.
Whilst we are assured in the UK by the NHS that the generics are biometrically equivalent to the branded
Category: Uncategorised

Replies: 3

Last updated: 12 December 2018
Tanya Cuffe on 20 November 2018

Category: Uncategorised

Replies: 12

Last updated: 12 December 2018

Can any supplements help hair grow back?
by sandy craine (Dec 12)

Tanya,
please do not share your private email on this forum. This site has open access so anyone could use your email for their own purposes. If you would like to contact individual members of this

by Tanya Cuffe (Dec 11)

Thanks for that!you are kind and it made me smile! My email ************* if you want further contact.
Tanya

by kat73 (Dec 11)

Tanya - Good for you for the sobriety! This is huge. This is succeeding at living.
I was going to add to my prior message and then forgot, but now it seems pertinent: I find

by fiona vaughan (Dec 11)

Hang in there Tanya. You’ve come a long way.
Category: Uncategorised

Replies: 13

Last updated: 12 December 2018
ian hinley on 17 October 2018

Category: Treating CML

Replies: 11

Last updated: 12 December 2018

Starting TFR in November after 9 years of daily drugs
by ian hinley (Dec 12)

Thank you Scuba and have been taking spray Vitamin D daily since I stopped as I saw that you had posted the benefits of this to the immune system and other benefits a while back.
Not sure I have

by ian hinley (Dec 12)

Thank you and they will take blood in February for first look at markers after stopping Sprycel.

by scuba (Dec 11)

Great news, Ian.
0.001% is indistinguishable with PCRU. Any value below 0.01% is meaningless, so you are doing terrific.
But as you pointed out, you have to be watchful these next several months. If

by kat73 (Dec 11)

Terrific, Ian! When will they be looking at immune system markers?
Category: Treating CML

Replies: 12

Last updated: 12 December 2018
Mick E on 10 December 2018

Category: About CML

Replies: 2

Last updated: 11 December 2018

Imatininib and heart failure
by Mick E (Dec 11)

Thanks for the reply John
thats pretty much what I have learned from the various sources I have found on the web. Always better though to get it from people who have similar experience.

by johnw1001 (Dec 11)

Hi Mick,
Many years ago I asked my specialist whether imatinib would have an adverse effect on the heart and he said if one had a previous healthy cardio-vascular system there should be no negative

by Mick E (Dec 10)

Hello to All
i was diagnosed with CML 5 months ago and have been frequently reading posts in this forum which have been very useful in coming to terms with what the condition causes and possible
Category: About CML

Replies: 3

Last updated: 11 December 2018
fehr on 24 February 2009

Category: Uncategorised

Replies: 11

Last updated: 11 December 2018

300mg Imatinib
by Mick E (Dec 11)

I was recently lowered to 300mg due to having a worrying period of depression. The lowered dosage has certainly helped with reducing it but the other side effects remain the same for me.

by kat73 (Dec 7)

Sue - I don't know how you've lasted this long. I was miserably sick every day I took Gleevec, for two years. I was continually told "most people tolerate the drug very well

by teddyb (Dec 7)

Better late than never i suppose......
I found this interesting study comparing outcomes for 200mg, 300mg and 400mg doses of Imatinib over many years.
https://onlinelibrary.wiley.com/doi/pdf/10.1111

by fehr (Feb 28)

Sandy, I do have confidence in Hammersmith and I am considering this seriously. I don't think my side-effects are nearly as bad as some, for instance Sue above, but it would be nice to reduce them
Category: Uncategorised

Replies: 12

Last updated: 11 December 2018
DawnD on 10 December 2018

Category: Children & young people

Replies: 4

Last updated: 11 December 2018

PCR test
by DawnD (Dec 11)

I Know so fast! Excited and gonna go for the decrease. Thanks so much CMlJax.

by DawnD (Dec 11)

Totally agree Scuba. Thanks so much for your support and great advice!

by scuba (Dec 11)

Congratulations Dawn - you are in a very good place.
Your CML is very sensitive to sprycel and it worked brilliantly for you.
You should definitely consider lower dose so you can minimize side

by cmljax (Dec 10)

Wow - way to go Dawn. I though I was fast - took me 6 months to get to <.003% PCR, which is as close to negative as you can get without being negative. I reduced dose at 5 months to 450 mg
Category: Children & young people

Replies: 5

Last updated: 11 December 2018
Gitel on 6 December 2018

Category: Uncategorised

Replies: 8

Last updated: 10 December 2018

Tooth extraction, below normal platelets. advice please
by kat73 (Dec 10)

Actually, Gitel, your experience is very common after an extraction, for anybody. Apparently, it's very important to get past those initial crucial hours (a day, two? I forget) without

by Sid35 (Dec 10)

Hello Gitel,
I am so sorry to hear that. I pray for your quick recovery.
Regards

Sid

by Gitel (Dec 9)

Update
tooth pulled with no problem in extraction. Easy

although my platelets were 113, the socket kept bleeding for 8 hours. Large Gelatinous clots
Because it was Saturday, ended up

by Gitel (Dec 7)

Thanks to all of you who replied. I feel calmer. The medical consensus seems to be that 50 is OK for dental work, although they took me off Sprycel for 2 weeks when I dropped to 70 a few months ago
Category: Uncategorised

Replies: 9

Last updated: 10 December 2018