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: Clinical trials

Replies: 4

Last updated: 19 November 2018

PinnedUCLH web-based consultation study
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: Clinical trials

Replies: 5

Last updated: 19 November 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
Tanya Cuffe on 20 November 2018

Category: Uncategorised

Replies: 8

Last updated: 11 December 2018

Can any supplements help hair grow back?
by Tanya Cuffe (Dec 11)

Just to add that apparently Vit E can help with drying skin hair so am starting on that as well as Vit D.and anything else that might help!will let you know if helps at all

by Tanya Cuffe (Dec 10)

Thank you Kat,I really appreciate it!Along with loss of looks,I have been in sobriety 4 years and my husband of 24 years has remarried and I wonder if any man will ever love me again as my looks

by kat73 (Dec 10)

Tanya - Well, all I can report on is myself, and I can say that it got better on Sprycel, especially the toad eyes. I still have a puffy face, but significantly less so. Wrinkles

by Tanya Cuffe (Dec 10)

Dear Kat
if I change to Sprycel will my looks return or is there any way of reversing this?i cannot believe I have lost my looks in one year of glivec use...hoping they may return on sprycel or can
Category: Uncategorised

Replies: 9

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
Felix on 10 December 2018

Category: Getting help

Replies: 0

Last updated: 10 December 2018

Personal Independance Payment
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: 1

Last updated: 10 December 2018
scuba on 7 December 2018

Category: Treating CML

Replies: 11

Last updated: 10 December 2018

Curcumin & Vitamin D - interesting research results (from ASH)
by scuba (Dec 10)

Chigi,
I hope your most recent PCR was a "blip" which can happen given PCR's methodology. At 0.1% you are still MMR (major molecular remission). Your next test result will guide you on

by chigi (Dec 10)

Hi Scuba
first and foremost, I wanted to sincerely thank you for all the great advice, reference articles and knowledge you’ve shared on this forum. I’ve greatly benefited from it and I

by Felix (Dec 8)

Hi Scuba ,thank you so much for your information I will get the other supplements you have suggested .Cheers ,Keep well .

by scuba (Dec 8)

Gitel,
Yet again, so-called medical people mis-informed (and I am being kind).
Whoever told you that at Mayo Clinic is very wrong. I hope it wasn't a doctor.
Curcumin is naturally occurring and
Category: Treating CML

Replies: 12

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

Category: About CML

Replies: 0

Last updated: 10 December 2018

Imatininib and heart failure
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: 1

Last updated: 10 December 2018
sandy craine on 5 December 2018

Category: Treating CML

Replies: 16

Last updated: 10 December 2018

20 years since diagnosis
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 ....

by teddyb (Dec 7)

Congratulations Sandy, and thank you for being there for us :)
Category: Treating CML

Replies: 17

Last updated: 10 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
Mona Gard on 10 December 2018

Category: Uncategorised

Replies: 0

Last updated: 10 December 2018

Stomach bloating
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: 1

Last updated: 10 December 2018
M.ashcroft on 8 December 2018

Category: Treating CML

Replies: 4

Last updated: 10 December 2018

Vitamin D & CML
by M.ashcroft (Dec 10)

Hi David thanks for your advice I do as you suggest

Mike

by David Fitz (Dec 9)

It should also be trivial for your haematologist to add a Vit D test to your next routine bloods. Just ask next time.
David

by M.ashcroft (Dec 9)

Hi Kali

Thank you for your feedback I will speak with my GP about this and ask to have my vitamin D tested

Kind Regards

Mike A

by kali (Dec 9)

I have learned from others on here that Vitamin D plays a significant role in helping our immune system.
I have had low vitamin D for years and have just recently been able to get it into the
Category: Treating CML

Replies: 5

Last updated: 10 December 2018
Mark6899 on 9 December 2018

Category: Uncategorised

Replies: 2

Last updated: 10 December 2018

True remission?
by AlastairC (Dec 10)

Mark, Prof Richard Clarke gave the latest information on stopping treatment at the Patient Day in September. You can listen to his talk from the link to the patient Day on the home page. There is

by RC Kirk (Dec 9)

Welcome to the CML Support forum Mark.
There are several theories for CML cures that researchers are working on. There hasn't been a cure for all of us yet. Some people have been

by Mark6899 (Dec 9)

I am currently 38 and have had this disease since my early 20's. Just wondering if this will ever truly go away?
Category: Uncategorised

Replies: 3

Last updated: 10 December 2018
kali on 2 December 2018

Category: Uncategorised

Replies: 24

Last updated: 10 December 2018

Pleural Effusion
by kali (Dec 10)

Thanks for the information!

by scuba (Dec 10)

This is what I take:
https://images-na.ssl-images-amazon.com/images/I/71YbPlEx7PL._SX522_.jpg
One a day in summer (with food).
Two one day in winter followed by one the next day.
I tend to take

by kali (Dec 10)

The vitamin D3 I take are drops (I didn’t mean sublingual). They are supposed to absorb through your system better. But anyway let me know what type you take. It is worth trying something

by kali (Dec 9)

What brand do you take? Is it a gel or pill? Is it small?
Category: Uncategorised

Replies: 25

Last updated: 10 December 2018
Vikram on 20 November 2018

Category: Clinical trials

Replies: 55

Last updated: 9 December 2018

PLEASE REPLY
by RC Kirk (Dec 9)

Hello Vikram,
My advice to you is to tell your doctor that you are taking a lower dose of imatinib at your next appointment. 300mg per day would probably be a good starting reduction and then

by Vikram (Dec 9)

???????..... HELLO ..... PLEASE REPLAY ......

by Vikram (Dec 7)

Hello ..... ..... ..... ...... Please reply your oppinion ... Side effect hair fall and facial hair ( beard hair ) ( some area of beard no hair ) any suggetion ... Any solution

by Vikram (Dec 7)

HI ASHOK , M.P. SHAH CANCER HOSPITAL AHEMDABAD .
Category: Clinical trials

Replies: 56

Last updated: 9 December 2018
Nimbus2 on 9 December 2018

Category: Uncategorised

Replies: 1

Last updated: 9 December 2018

Generic Imatinib Compared With Gleevec in CP-CML: Patient Outcomes Across 3 Countries
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: 2

Last updated: 9 December 2018
fiona vaughan on 6 December 2018

Category: Uncategorised

Replies: 10

Last updated: 7 December 2018

frequency of follow up? What’s normal?
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

by fiona vaughan (Dec 6)

Thanks guys. I knew I could get answers on this site. I will do my own blood counts for the next month and insist on a PCR at my next appointment mid feb and hope all good from there. Cheers
Category: Uncategorised

Replies: 11

Last updated: 7 December 2018
Rick B on 2 December 2018

Category: Uncategorised

Replies: 5

Last updated: 6 December 2018

Feeling somewhat normal?
by Joe Hoffman (Dec 6)

hi rick i have been on glevec for eighteen years lots of leg cramps my teeth are falling out lose of some energy some bone pain but it beat a dirt nap i still make fire wood twice a week i do

by Rick B (Dec 5)

Thank you all for your replies. I appreciate it!

by kat73 (Dec 3)

Rick - Keeping in mind that mine is just one experience, I never had a good day on Gleevec and I took it for two years. I got to the point where I questioned what was the point, if living felt

by Nimbus2 (Dec 3)

I can relate to this, Rick.
I am 62. I started my imatinib on 21 July. My measurements are within target but are poor compared with yours, my FISH at 12 weeks is 15% and PCR 17%.
My side effects
Category: Uncategorised

Replies: 6

Last updated: 6 December 2018
cmljax on 5 December 2018

Category: Treating CML

Replies: 1

Last updated: 5 December 2018

Genomic Testing
by scuba (Dec 5)

One of the "off target" effects of dasatnib I am hoping for:
http://majormouse.org/?q=node/103

by cmljax (Dec 5)

So my wife sends me this link and I am wondering if anyone here has any thoughts on whether or not this would be a good tool to use to determine which TKI might have the fewest and/or least severe
Category: Treating CML

Replies: 2

Last updated: 5 December 2018
bendicco on 5 December 2018

Category: Uncategorised

Replies: 6

Last updated: 5 December 2018

Uh oh freaking out!
by bendicco (Dec 5)

Yes I do know about the grapefruit, but she was adamant about it ie: ginko, garlic . But I’m gonna stay away from that garlic powder. Although cooking with garlic she said is fine!

by David Fitz (Dec 5)

Take nothing beginning with G? Besides grapefruit, that doesn’t sound like sound scientific advice!
In general, TKI takers like us want to stay clear of things that muck around with a family

by bendicco (Dec 5)

Thanks Sandy, I’m hoping that’s what it is! Interesting that two years ago the pharmacist told me not to continue taking the garlic supplements I was taking along with some other

by sandy craine (Dec 5)

Hi Bendicco and welcome,
This latest PCR result rise is more than likely a 'blip' caused by some problem with the blood sample- i.e it may have been contaminated between the draw and
Category: Uncategorised

Replies: 7

Last updated: 5 December 2018
AF on 4 December 2018

Category: Blood tests

Replies: 4

Last updated: 5 December 2018

Increased HB after stopping Dasatinib
by AF (Dec 5)

Thanks David for your reply makes me feel a lot better

by AF (Dec 5)

Yes hameglobin. So if I change to your scale mine will be 13.6

by David Fitz (Dec 5)

Dasatinib can be myelosuppression - that means it can lower blood counts.
Your increase in Hb (haemoglobin) is likely down to you coming off dasatinib and is a good thing. You might feel a little

by RC Kirk (Dec 5)

What is Hb? Is it hemoglobin? If it is, then your result might be normal if your lab uses a different scale than mine.
Here's what my online chart shows: Lab Test - Hemoglobin
Category: Blood tests

Replies: 5

Last updated: 5 December 2018