TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

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

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shawn_143 on 16 June 2016

Category: Side effects

Replies: 3

Last updated: 20 June 2016

Recently Diagnosed with CML
by shawn_143 (Jun 20)

Thank you So much Sandy and David, good to hear that and got more confidence
i have my Next visit to Dr in 4 days with my CBC (after 10 Days i am checking my CBC). and for the past 3-4 days i

by David Fitz (Jun 16)

HI Shawn,
I was the same age as you when diagnosed.
You're going to be fine - almost certainly. You ought respond well to therapy and live a normal life-span, even if complicated with medicine (

by sandy craine (Jun 16)

Hello Shawn and welcome,
To put your mind at rest I will say first that over 90% of patients diagnosed in chronic phase CML respond very well to TKI therapy and go on to live out their normal life

by shawn_143 (Jun 16)

Hi,
I am Shawn 34Yrs old, i live in India. I am recently diagnosed with CML (2-3 weeks back) and i am on Veenat 400 MG (Generic Version of Imatinib) once a day.
Initially I was 60K of WBC
Category: Side effects

Replies: 3

Last updated: 20 June 2016
ginger on 19 June 2016

Category: Uncategorised

Replies: 1

Last updated: 20 June 2016

Hypopigmentation
by annie t (Jun 20)

Hi.. I am on Gleevec and I too have a bloated face everyday. However it's frustrating to have the skin color changed. Been an indian it's too visible and people give me a weird look. I discussed

by ginger (Jun 19)

Hi,

Been on 100 mg sprycel since dx, Jan 14, 2014. Pcru on 4/18/16. Joint pains cropped up for 3 wks, noticed my Asian skin is lightening up, also think my cheeks seem puffy...I do have a
Category: Uncategorised

Replies: 1

Last updated: 20 June 2016
David Ryner on 8 June 2016

Category: Uncategorised

Replies: 1

Last updated: 12 June 2016

CML on BBC Radio 4 'File on 4 '
by David Ryner (Jun 12)

I've listened to the programme again over the weekend and had more time to reflect on some of the content.
Something that stunned me on a second listening was the claim made by NHS England in

by David Ryner (Jun 8)

Here is a link to last night's File on 4 programme http://www.bbc.co.uk/programmes/b07dlxxt which featured Russell Cooper who was what NICE call a 'patient expert' at the recent
Category: Uncategorised

Replies: 1

Last updated: 12 June 2016
Audrey on 10 June 2016

Category: Uncategorised

Replies: 1

Last updated: 11 June 2016

Potential cure?
by sandy craine (Jun 11)

Thanks for sharing the link Audrey .... many of us have been aware of Prof. Holyoakes research over the last 5 years or so. She and her team have made remarkable progress and it is good to see that

by Audrey (Jun 10)

I couldn't find any threads regarding the latest advances with CML research at Univ. of Glasow. It was all over the Scottish news and front page in The Herald. Here's a link http
Category: Uncategorised

Replies: 1

Last updated: 11 June 2016
imran.abbas05 on 18 January 2016

Category: About CML

Replies: 10

Last updated: 9 June 2016

Newly Diagnosed !!
by imran.abbas05 (Jun 9)

Thank You!
I appreciate your detailed information. Pardon me for my late replies :)
I will for sure update you about my latest results whenever it happens.
Wish you best of luck and a health and

by David Fitz (May 29)

Hi again,
I think 2% after 7 months is not bad at all! After a similar time post-diagnosis, I was 4%. Even a year after diagnosis I was at 1%.
I just got my latest result a few days ago (3 years

by imran.abbas05 (May 29)

Good Day!
Dear David I finished my BCR-ABL test a week ago and doctor told me that your BCR-ABL PCR is 2%. Is this ok or not? it was done after using Dasatinib 100mg for 7 months. And doctor

by imran.abbas05 (Jan 23)

Thank you very much. I appreciate your cooperation. Thank you.
Category: About CML

Replies: 10

Last updated: 9 June 2016
FLZoso on 9 June 2016

Category: Getting help

Replies: 1

Last updated: 9 June 2016

The word "Leukemia"
by Ben K (Jun 9)

Hi there - great that you are in remission, I am looking forward to that day!! It is a funny word, leukaemia. Since being daignosed I have wondered whether it is the "right"

by FLZoso (Jun 9)

I'm in remission and don't really think about that I have CML- leukemia. I use to hear the word once in awhile throughout my life but never gave it much thought until it knocked on my door.
Category: Getting help

Replies: 1

Last updated: 9 June 2016
chrissie on 23 May 2016

Category: Uncategorised

Replies: 17

Last updated: 8 June 2016

Indigestion?
by chrissie (Jun 8)

Yes, will do next week. Thanks, Sandy. Went back onto 400mgs Imatinib Oct 2015. To put the inconvenient side effects into proportion:
PCRs Jan - 0.04,

by sandy craine (Jun 7)

Chrissie,
H-pylori bacteria has proven to be a prime cause of ulcers. I suggest you ask for a test to see if you are positive.
Sandy

by chrissie (Jun 6)

Thank you so much, Sandy and Richard. I did wonder about an ulcer - my father had lots of these and my husband had one a while back. I shall discuss this possibility and omeprazole with my GP when I

by Richard42 (Jun 4)

Hi Chrissie
I think best discuss the right course for you with your doctor. All I can say is that when I reported what I thought were really quite worrying symptoms, I was reassured that it
Category: Uncategorised

Replies: 17

Last updated: 8 June 2016
Minny boo on 2 June 2016

Category: Uncategorised

Replies: 3

Last updated: 6 June 2016

CMML 2 STEM CELL TRANSPLANT
by Minny boo (Jun 6)

Thank you so much for your informative reply it has been so amazing to hear you are a survivor and that you are here to tell the tale..Amazing and so so helpful

I am so grateful for your

by sandy craine (Jun 3)

HI,
You may find the following link helpful in understanding CMML which is one of the myeloproliferative diseases but not the same as CML.
http://www.cancerresearchuk.org/about-cancer/

by darley (Jun 3)

Hi
I've had CML for a long time. So not the same thing but when I was diagnosed over 22 years ago it was VERY poor prognosis and I went from well to VERY seriously ill as my leukaemia

by Minny boo (Jun 2)

A
Category: Uncategorised

Replies: 3

Last updated: 6 June 2016
insclrk on 5 June 2016

Category: Side effects

Replies: 1

Last updated: 5 June 2016

Itching with gleevic
by sandy craine (Jun 5)

He should talk to his doctor about a short course of steroids/hydrocortisone and/or stopping therapy for a few weeks to see if it is a side effect of this TKI. If the rash does not resolve with a

by insclrk (Jun 5)

My son has been taking Gleevec 400mg for over a year now. He has outbreaks of scabie type sores all over his body including his penis area. Has anyone else experienced this? What
Category: Side effects

Replies: 1

Last updated: 5 June 2016
David Ryner on 3 June 2016

Category: Uncategorised

Replies: 2

Last updated: 3 June 2016

NICE CDF Rapid Reconsideration Committee meeting for bosutinib
by David Ryner (Jun 3)

You make an interesting point and what's called NICE 's 'new approach', and broader policy, is all about reducing the timelines between clinical trial data becoming available and

by darley (Jun 3)

Excellent post and thank you for that.
Whilst I understand the NICE process and the necessity of ensuring that drugs are objectively reviewed, it does seriously concern me that NICE impedes clinical

by David Ryner (Jun 3)

As part of the NICE CDF (Cancer Drugs Fund) Rapid Reconsideration process for bosutinib I attended, with a patient who very kindly volunteered to participate, the committee meeting in Manchester
Category: Uncategorised

Replies: 2

Last updated: 3 June 2016
sandy craine on 1 June 2016

Category: Uncategorised

Replies: 0

Last updated: 1 June 2016

CML Patient's support meeting - Glasgow 16th June 6-8pm
by sandy craine (Jun 1)

See our events page for details
http://www.cmlsupport.org.uk/event/cml-patient-support-group-meeting-gla...
Category: Uncategorised

Replies: 0

Last updated: 1 June 2016
Frenchguy on 11 May 2016

Category: Uncategorised

Replies: 16

Last updated: 1 June 2016

Leg Muscular and other limb problems
by Frenchguy (Jun 1)

Thanks John,
Unfortunately, our cases seem to be so similar... With the frustration come the fear of being mis-diagnosed from long term tki using or something else.
Walking is my main issue actually

by Parklife (Jun 1)

Hi Francis
Sorry for the late response, I haven't been great.
In response to your question, the twitches are intermittent, appear in different areas and are not troublesome. I have had them across

by Frenchguy (May 28)

Hi all,
I come back on the thread, to give you some news which are exactly the same as before. John, I am really "interested" to know that you suffer from twitches too. I am actually

by chrissie (May 25)

Rooting for you, John. I so hope they get to the bottom of all this pain. Not much I can add but I'm sure there are many people out there reading of your experience and thinking of you,
Best
Category: Uncategorised

Replies: 16

Last updated: 1 June 2016
wshi2001 on 31 May 2016

Category: Uncategorised

Replies: 3

Last updated: 1 June 2016

Left abdomen pain lately
by nigel (Jun 1)

Well worth mentioning it to you Dr and or pop and see you GP for them to feel for it to see if palpable.

by wshi2001 (Jun 1)

Hi, Nigel,
Thanks so much for your quick response. The left abdomen pain persists, it gets worse after I had a meal. I hope it is not cml related. I did my blood test today.

by nigel (May 31)

Hi William. Firstly you mention not being at MMR 0.1 at 18 months, while absolutely that is right, you are so so close that basically you have achieved it in my view. You have a CML that seems to

by wshi2001 (May 31)

Hi, everyone,
Its been a while that I haven't posted on the forum. My PCR from diagnose is 412%, 37%, 0.74%, 0.24%, 0.48%, 0.11%, 0.12% (3 months ago), virtually no change for the last two
Category: Uncategorised

Replies: 3

Last updated: 1 June 2016
lesley baliga on 13 September 2015

Category: About CML

Replies: 6

Last updated: 31 May 2016

atypical CML
by ajmmmm2728 (May 31)

Does your husband experience SEVERE fatigue and weakness?

by sandy craine (Sep 14)

Hi Lesley, as far as I am aware 'atypical CML' (aCML) is a myelodysplastic syndrome (MDS)/ myeloproliferative neoplasm (MPN) - part of a group of rare diseases of the marrow.
aCML does not show

by lesley baliga (Sep 14)

Thank you very much Darley I didn't know about google scholar - very useful.
Lesley

by lesley baliga (Sep 14)

Hi David,
We don't know. His haematologist just said in passing that it is atypical and has referred him to a specialist at Hammersmith Hospital. My husband doesn't really want to know anything
Category: About CML

Replies: 6

Last updated: 31 May 2016
DKurup on 9 May 2016

Category: Reproductive health

Replies: 6

Last updated: 21 May 2016

Discontinue Imatinib after 1 year for conception
by David Fitz (May 21)

That's great to hear, I hope it's put your mind totally at rest.
Good luck!!

by DKurup (May 21)

Thank you David, Sandy, Darley, Nigel for your answers.
We have decided to not stop the medication and continue. Talked to Dr. about this and he is okay with this as well.
Thanks again,

by nigel (May 9)

LIkewise i would agree, indeed this was covered this week at the cml horizons conference where they very clearly said fathering a child on imatinib is safe, and on the oher tkis there is growing

by darley (May 9)

I'm gob-smacked at that advice. For certain it's not best practice and in my opinion you're right to be concerned.
I notice that Sandy has referred you to a talk by Dr. Graeme
Category: Reproductive health

Replies: 6

Last updated: 21 May 2016
Doshi on 19 May 2016

Category: Blood tests

Replies: 2

Last updated: 19 May 2016

Gleevec resistance?
by David Fitz (May 19)

Hi Raj,
With regards to timing ... with imatinib, you are "topping up" a level in your body so breakfast or lunch ought not to make a difference really. Though it's best to take as

by nigel (May 19)

Hi Raj, Welcome to the group. Your results have been outstanding for 10 years. I do feel that your " blips" are exactly that and not resistance. Your levels are still very very low and

by Doshi (May 19)

Hello All,
I am new to the group. Hope you can help answer my question.
History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I was in major molecular response and
Category: Blood tests

Replies: 2

Last updated: 19 May 2016
Lopaulpa on 16 May 2016

Category: Side effects

Replies: 2

Last updated: 17 May 2016

Do you eat any supplements, vitamins and such?
by David Fitz (May 17)

Vitamin D because I'm low on that, but then again nearly everyone in the UK is!

by darley (May 16)

No. I just have a well balanced diet so get everything I need there. Also have regular blood,checks so i know I'm neither deficient or have problems with malabsorption.

I'm not a

by Lopaulpa (May 16)

I am wondering because of the low energy I have and all that side effect business with me taking Tasigna, I was wondering if ya'll take any vitamin supplements or something like that to get some
Category: Side effects

Replies: 2

Last updated: 17 May 2016
RufusBabe on 20 April 2016

Category: About CML

Replies: 3

Last updated: 13 May 2016

New to the group
by nicholas22 (May 13)

Hi rufus, I was told I had cml about a year ago, and it to made me very angry. Ive led a very healthy lifestyle, but as we all know with cml its nothing really to do
with that, after a year on

by sandy craine (Apr 21)

Hi,
It must be very hard for you to cope with your sisters anger which is really an expression of her fear.... I do agree with David that you might try to learn as much as you can about CML,

by David Fitz (Apr 20)

Hi there. I know - all of us here know - how your sister is feeling at the moment. Anger is a pretty normal response to a cancer diagnosis. Unfortunately, our nearest and dearest are the ones

by RufusBabe (Apr 20)

Hello everyone
Hope you are OK :) My sister has been diagnosed with CML and she has been so angry since. She cannot stand seeing me as I have not CML and constantly tells me I should have CML
Category: About CML

Replies: 3

Last updated: 13 May 2016
teddyb on 13 April 2012

Category: Uncategorised

Replies: 18

Last updated: 12 May 2016

Safe to split 400mg Glivec in 3 or 4 parts for easier swalloing?
by chrissie (May 12)

Hi teddyb
Thanks for you reply. I have now started taking the 400mg as one whole tablet again and the pain in my oesophagus is decreasing, so am wondering if it was taking the tablet in 2 halves.

by teddyb (May 10)

Chrissie: I have also been on the 100mg for the last years now, i hope you can get them soon. The small pills are "scored" so they can be split, but i think there is a lot more Imatinib

by chrissie (Apr 26)

Thanks for your reply, Olivia.
Yes I have always had problems swallowing the 400mgs. I was so pleased when I was on the 2x100mgs as they were easy to swallow, but after losing MMR 3 times in the

by Olivia (Apr 26)

That's interesting, Chrissie. When you were first diagnosed and presumably put on the big 400 tablets, did you have any difficulty swallowing them then? Have you asked about going on
Category: Uncategorised

Replies: 18

Last updated: 12 May 2016
rsgiles on 4 May 2016

Category: Blood tests

Replies: 9

Last updated: 10 May 2016

How often between PCR tests
by teddyb (May 10)

Hello.

I have been tested every 3 months up until now, but after 4 years of CML, and being in MMR for the last 3 years, i am now having pcr tests done every 6 months.

Good luck to you

by sandy craine (May 6)

MUGA scans are usually for those who have had radiotherapy to the chest, spine or upper abdomen or those who have had a stem cell transplant or certain 'chemotherapies'. I had to have a MUGA

by darley (May 6)

Not because of imatanib. But I do know that some chemo can cause heart problems. Not so far as I'm aware the TKI's though.
I have had one and because I had total body

by rsgiles (May 5)

Did anyone ever have to take that MUGA test for the heart?
Category: Blood tests

Replies: 9

Last updated: 10 May 2016