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Gareth on 19 February 2021

Category: Treating CML

Replies: 10

Last updated: 20 February 2021

I have CML!
by alexmcpee (Feb 20)

Hey Sandy,
No not at all thank you for your reply we are all learning on this journey 😀. Yeah it’s all a bit of mystery all the numbers. I have to this day remained slightly paranoid of my

by sandy craine (Feb 20)

Hi Alex,
Please do not think I was saying you were wrong or giving false information, I was just trying to say how complex the whole thing is and the white cell count on its own, does not

by alexmcpee (Feb 20)

Oh my bad. When I was diagnosed before I had my FISH my consultant said that I’d prob had CML for 3 years due to my high white cell count of 330 (which I understand causes the increase in

by Gareth (Feb 20)

My current bloods breakdown:
Haemoglobin 137
White count 36.7
Platelets 227
Neutrophils 29.5
G
Category: Treating CML

Replies: 10

Last updated: 20 February 2021
BoatGuy22 on 12 February 2021

Category: Treating CML

Replies: 4

Last updated: 14 February 2021

Gleevec causing Inflamed Liver
by johnw1001 (Feb 14)

Hi Bill,
I wonder if you are taking any other medications such as pain killers like acetaminophen (paracetemol) that will hammer the liver .
My consultant told me that the Gamma GT

by sandy craine (Feb 14)

Hi Bill,
it seems that milk thistle is not contraindicated with TKis
just a quick search indicates it is safe
'Milk thistle is taken by mouth most often for liver disorders, including

by BoatGuy22 (Feb 12)

Hi Kirk, Thanks for the reply. Asciminib has been mentioned by my oncology team but due to the fact that it is so new their is some hesitation due to the lack of clinical history to show

by RC Kirk (Feb 12)

Hi Bill,
Looks like you have a good CML team on your side. I was just wondering if asciminib has been considered as an option? I don't know, but maybe it's hard on the liver as
Category: Treating CML

Replies: 4

Last updated: 14 February 2021
mrgee on 11 February 2021

Category: Treating CML

Replies: 4

Last updated: 13 February 2021

E450K Mutation
by mrgee (Feb 13)

Thanks for posting over there. I will reply there was well. It will be interesting to see if there is any publicly available info.

by mrgee (Feb 13)

Thanks I appreciate the link.

by Buzzm1 (Feb 13)

▼https://communityview.lls.org/statuses/8604
Trey
The E450K mutation can come and go, but it is NOT a precursor to other mutations. It is a mutation which can be transient, which

by RC Kirk (Feb 12)

I found this: https://pubmed.ncbi.nlm.nih.gov/19768693/
From a cursory look it appears that some mutations transform to T315I. So maybe ponatinib or asciminib would be something to
Category: Treating CML

Replies: 4

Last updated: 13 February 2021
Mari_lyn on 10 January 2021

Category: Treating CML

Replies: 9

Last updated: 10 February 2021

How to read response definitions of 2nd line TKI's after 1st line failure/warning responses
by Mari_lyn (Feb 10)

Hello Martin,
I'm so sorry, I didn't get a notice after your reply! And haven't checked-in here for a long time but I just read that there were some malfunctions last month on this

by MartinZA (Jan 18)

Also another thing I just thought of:
Let's say you are on imatinib for the first 18 months after diagnosis and then change to dasatinib because you didn't reach MMR. If you have to count the time

by MartinZA (Jan 18)

Hi Marilyn
Sorry to hear that your side effects are worse on dasatinib. Here's hoping they soon settle down! Something I have often wondered is whether the response to the drug correlates with the

by MartinZA (Jan 18)

Hi Marilyn
Sorry to hear that your side effects are worse on dasatinib. Here's hoping they soon settle down! Something I have often wondered is whether the response to the drug correlates with the
Category: Treating CML

Replies: 9

Last updated: 10 February 2021
sandy craine on 3 February 2021

Category: Treating CML

Replies: 0

Last updated: 3 February 2021

Discontinuation of TKIS in CML: when and for whom?
by sandy craine (Feb 3)

A clear and thorough overview of the current data available from the clinical studies of TKI discontinuation and/or dose reduction.
Full article here
Sandy
This is quite an in-depth article so
Category: Treating CML

Replies: 0

Last updated: 3 February 2021
Jmbnccyn on 29 January 2021

Category: Treating CML

Replies: 4

Last updated: 31 January 2021

Slow response imatinib..?
by EvaH (Jan 31)

Ive gone on to live in 3 countries on 2 continents since my diagnosis (including spain). I dont feel my CML restricts me in any way.
If you can, try to focus on what comes after, not on where you

by EvaH (Jan 31)

Every body is different, you are getting better and that's what matters.
I had a sub optimal response on 400mg imatanib at 3 months, but continued to have a very quick TMR time. And i had more than

by Dustylloyd (Jan 31)

Hi jay,
Alex is spot on in his reply to your concerns, I was on 200mg of Imatinib when first diagnosed 6 years ago, after 9 months my consultant informed me it had “failed” which I found

by alexmcpee (Jan 30)

Hi Jay
I completely understand your worries and concern. And like you in the early days I didn’t want to know anything bad and buried my head in the sand. At diagnosis I didn’t read any
Category: Treating CML

Replies: 4

Last updated: 31 January 2021
sandy craine on 20 December 2020

Category: Treating CML

Replies: 8

Last updated: 29 January 2021

Meet-the-expert Q&A Session- 27th Jan 2021
by sandy craine (Jan 29)

Details/timelines are included in the original post
You can send a question before the webinar via iCMLf email contact... see below.
Sandy
https://us02web.zoom.us/j/84715783748
Meeting-ID: 847

by mil (Jan 27)

Hi, what time is for USA? Thank you!

by sandy craine (Jan 24)

Hi Marion,
I think you need to put your question on a different thread. This thread is only to give the links for you to log in and join the ICMLF expert Q&A session 27th January. If you join

by ruel (Jan 23)

Hi marion,

Can i ask if you dont mind,what time you take your medicine? Is it with empty stomach or with foods??
Thnks
Category: Treating CML

Replies: 8

Last updated: 29 January 2021
dadbags on 11 January 2021

Category: Treating CML

Replies: 4

Last updated: 15 January 2021

DIAGNOSED 7/3/2001 CML--DIAGNOSED NO CML TODAY AFTER 3YEARS NO GLEEVAC
by israel (Jan 15)

Congratulations on reaching a new belt and being off gleevec for this long.

by kat73 (Jan 13)

dadbags - Congratulations! Could I ask, did you reach PCRU at some point and (presumably then) stop taking Gleevec? And if so, did you remain undetectable for these past three years?

by CM-elon (Jan 12)

Congrats Steven! Great news...and keeping the flames of hope burning for all of us. Good luck with the tests!

by scuba (Jan 11)

Congratulations Steven!
Stay vigilant and healthy.
Category: Treating CML

Replies: 4

Last updated: 15 January 2021
Shera73 on 8 January 2021

Category: Treating CML

Replies: 3

Last updated: 8 January 2021

CML Patient assitance programe in uk
by johnw1001 (Jan 8)

I think that you will find that in the UK only hospital consultants are able to issue a prescription for a tki such as imatinib and not your GP.In addition under the NHS you will not be issued

by Shera73 (Jan 8)

Thanks for your response, from where i need to approach for glivic imtinab tablets.

Thanks and a blessing friday

by David Fitz (Jan 8)

Hi there,
All NHS patients in the UK don’t have to pay for any TKIs in the UK.
Because of that there are not, to my knowledge, any patient assistance programs
David.

by Shera73 (Jan 8)

Hi greeting

I was diagonosed CML in March, 2007.since i am taking glivic imtinab 400mg daily. My blood counts are in normal range. I need patient assitance programme where i vould get free
Category: Treating CML

Replies: 3

Last updated: 8 January 2021
EvaH on 19 April 2017

Category: Treating CML

Replies: 27

Last updated: 5 January 2021

Have you reduced your dosage due to deep response? Share your experience
by CM-elon (Jan 5)

Hi Eva,
I was drawn to this thread as I am due to start dose reduction in a month or so.
I have been on 300mg Nilotinib 2x a day since the end of May 2018 (so 2.7 years). My number has been

by EvaH (Jan 4)

Hi Lucky (and everyone)
Happy to see this thread is up again after some time.
Ok, 4 years, 3 countries and 2 continents later I'm still on 400mg of Imatanib, and still in MMR, and have

by David Fitz (Aug 10)

You might find this interesting as well ...
Once a day nilotinib: A Real Life Observational Study | CML Support
David.

by Lucky (Aug 10)

Hi Scuba,
I looked at the references of the articles you sent me and found a good news for patients who are on nilotinib: “Switching from nilotinib twice daily to once daily at a reduced
Category: Treating CML

Replies: 27

Last updated: 5 January 2021
Lavinia on 22 November 2020

Category: Treating CML

Replies: 12

Last updated: 4 January 2021

Seeking advice: Should I be pushing my doctor to start me on 50mg Dasatinib instead of 100mg if this is early detection?
by Lavinia (Jan 4)

Hi Colleen,
As I still can’t figure out how to DM you I just thought I’d follow up here and see how you’re treatment is going now that you’re a few months in?

by Lavinia (Jan 4)

Hi Kirk,
Thanks for your reply and advice! I find it interesting what drugs people are started on. It seems to be very much based on what country you’re from I’ve noticed. I’ll be

by RC Kirk (Dec 16)

Hi Lavinia,
I'm really perplexed at the lack of urgency your doctors have shown about getting your treatment started. I understand completely why you wanted to take care of the IVF first,

by Lavinia (Dec 16)

Hi Colleen,
Thanks for checking in on me and for sharing more of your first few weeks experience . I actually tried to PM you but I couldn’t figure out how to do it :) How many has it been now
Category: Treating CML

Replies: 12

Last updated: 4 January 2021
aliensheep0 on 23 December 2020

Category: Treating CML

Replies: 2

Last updated: 23 December 2020

No BCR-ABL Mutations
by johnw1001 (Dec 23)

Hi
I would tend to agree with Alex that it seems strange that you have been put on Bosutinib at such an early stage.
Normally the progression might be to still start on imatinib and if found

by alexmcpee (Dec 23)

Hey there
Its strange that they won’t try Nilotinib or Dastinib before trying Ponatinb because if a mutation wasn’t found then maybe either of those would work too. It’s also quite

by aliensheep0 (Dec 23)

After my 2nd bone marrow biopsy, it was found that I was resistant to Bosulif, and my Hematologist orders a chromosomal test to find any mutations.
I discussed the results and they found no bcr-abl
Category: Treating CML

Replies: 2

Last updated: 23 December 2020
jaideepdoc on 1 August 2020

Category: Treating CML

Replies: 9

Last updated: 23 December 2020

Jump in PCR ABL after 2 yrs
by jaideepdoc (Dec 23)

Hi
so the mutation results came with the T315 type. so keeping in mind that there no other issues doctor started me on ponatinib 30 mg as a starter dose.
i have responded well and with the bcr

by Praa (Oct 6)

Hi,
Now what heapn

by Praa (Oct 6)

Hi,
Now what heapn

by Praa (Oct 6)

Hi,
Now what heapn, any mutions or what abt your bcr /abl teat result.

Any mutiastion or same medician your contuning.
Thanks

Ra
Category: Treating CML

Replies: 9

Last updated: 23 December 2020
Ray Sell on 9 September 2020

Category: Treating CML

Replies: 32

Last updated: 17 December 2020

Switiching from Imatinib to sprycel
by argearge (Dec 17)

An update. Just my results back. After 30 months 0,13% IS with imatinib 600. No need yet to switch to dasatinib. My onc wants to try dasatinib 50mg if the imatinib will fail. 3 months ago my results

by RC Kirk (Nov 17)

It's been nearly three years ago, so my memories aren't too fresh. IIRC it was only a few days before I noticed the irregular beats. I started at 100mg/day, then went down to 50

by Ray Sell (Nov 16)

RC Kirk
It took 11 days from starting to start giving me IHR. I felt lots better on Sprycel. Did things because I wanted to, not because I had to.
How long did it take for yours to

by RC Kirk (Nov 16)

Hi Ray,
Your experience changing from imatinib to dasatinib is very similar to mine. I experienced irregular heartbeats when starting dasatinib. The worst was when I had an episode of
Category: Treating CML

Replies: 32

Last updated: 17 December 2020
Sherley on 8 November 2020

Category: Treating CML

Replies: 8

Last updated: 30 November 2020

Switching meds from Dasatinib to nalotinib
by Sherley (Nov 30)

Thanks Ian! I really appreciate your input. Yes I talked to my second doctor which he has actually been there from day one but only as a second opinion bc o am 3 hours away. He

by ipmaki (Nov 17)

Hi Sherley,
Just thought I would second what you have been told on the forum. I am in a similar boat where I am on Sprycel 100mg and got down to 0.106% at 24 months and have increased (and plateaued

by kat73 (Nov 11)

Totally agree with Alex.

by alexmcpee (Nov 8)

No problem you’ve got good advice there stick to that and listen to clinical trial doc and maybe switch doctors if they persist with this idiotic recommendation. You need the experience with
Category: Treating CML

Replies: 8

Last updated: 30 November 2020
Mosalem2093 on 19 November 2020

Category: Treating CML

Replies: 0

Last updated: 19 November 2020

Vidaza & Spyrcel alternative Questions
by Mosalem2093 (Nov 19)

Hi all,
My father is 79 years old and he is a CML patient since 2011.
8 months ago, they have switched to Sprycel but a month ago he was hospitalized due to ineffective Sprycel. He has been through
Category: Treating CML

Replies: 0

Last updated: 19 November 2020
Maggi 813 on 1 July 2020

Category: Treating CML

Replies: 21

Last updated: 3 November 2020

Lack of response on Nilotinib
by alexmcpee (Nov 3)

Hey,
No it’s a 3 hour fast 2 hours before meds and 1 hour after is the standard across the board x2 a day 12 hours apart. So yeah my question was is he fasting only 2 hours (which is incorrect

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problem. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problems. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by alexmcpee (Oct 30)

I am interested in your claim about absorption. You mentioned when you changed from 2 - 3 hours you saw drops. I am on this TKI and the standard is to fast for 3 hours not 2 by default x2 times
Category: Treating CML

Replies: 21

Last updated: 3 November 2020
Brett0503 on 18 October 2020

Category: Treating CML

Replies: 15

Last updated: 29 October 2020

BCR-ABL uptick
by David Fitz (Oct 29)

You might be thinking of this one: https://vimeo.com/220445547
I don't have the time to watch it now to check, but the title of that session was "Are we ready for recommendations

by Nimbus2 (Oct 29)

Thank you, David.
I cannot find the appropriate authority now but I have seen a video in which Prof Jane Apperley suggest that those with the b2a2 transcript type experience greater difficulty

by David Fitz (Oct 29)

That's right. The e1a2 RNA encodes p190 fusion protein. b2a2 or b3a2 encode the p210 fusion protein, which is the most common for us lot. c3a2 encodes the even lesser spotted p230 protein which

by Brett0503 (Oct 27)

Good informational video, thanks for sharing
Category: Treating CML

Replies: 15

Last updated: 29 October 2020
Mixail on 25 October 2020

Category: Treating CML

Replies: 0

Last updated: 25 October 2020

Could this be a real new treatment. Thank you.
by Mixail (Oct 25)

Hi all look at this article please and is this look real. Thank you.
https://www.studyfinds.org/leukemia-treatment-targets-protein-in-blood/
Category: Treating CML

Replies: 0

Last updated: 25 October 2020
Zzyzxuk on 22 October 2020

Category: Treating CML

Replies: 10

Last updated: 24 October 2020

Pick Your Poison.... (TKIs actually)
by kat73 (Oct 24)

I ditto Felix. Your doc will probably not go for 50 (even though there is evidence from a study to say starting with 50 dasatinib is fine), but you'd probably be OK for several months at

by Felix (Oct 24)

Hi, if your Doc would let you start on 50 mg instead of 100 mg ,pleural effusions could be avoided .But I don't know if he would agree with this dose because you are only just starting off ,Good

by Zzyzxuk (Oct 24)

I'm leaning towards Dasatinib, because the Nilotinib has a higher rate of strokes, and whilst I know you can't predict your side-effects, that is one side-effect I want to avoid...

by alexmcpee (Oct 23)

I just ran the test came back as 2.0174 intermediate... that sounds better than “high risk” lol.
Category: Treating CML

Replies: 10

Last updated: 24 October 2020