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SorubhMaggo on 19 April 2021

Category: Treating CML

Replies: 0

Last updated: 19 April 2021

Swelling in foot on Dasatinib
by SorubhMaggo (Apr 19)

Hello there,
I have been on 100mg Dasatinib for almost 3.5 years. So far so good!
10 days before I got hurt with a nail under my left foot. The wound was well healed in a few days but leaving behind
Category: Treating CML

Replies: 0

Last updated: 19 April 2021
Chca3977 on 11 April 2021

Category: Treating CML

Replies: 5

Last updated: 12 April 2021

Has anybody had a stem cell transplant to help cure CML?
by sandy craine (Apr 12)

I hope his GVHD is not having too much of an impact on his quality of life. He was obviously in a difficult place - Blastic transformation - so I am not surprised they went for full transplant. Even

by sandy craine (Apr 12)

Hi Scuba,
Yes...my PCR tests show BCR-Abl % at 0.0002% and sometimes 0.0001%. My haematologist (Prof. Jane Apperley) just views these results as negative- or as you sometimes refer to this kind of

by Chca3977 (Apr 11)

Hi,

thanks for the reply. So good to hear your now cured and the BCR - ABL undetectable. My boyfriend was diagnosed at the ‘blast’ stage with Full Intensity Haplo transplant 9/10

by scuba (Apr 11)

HI Sandy,
I was curious your statement, "... virtually undetectable"?
Do you still have 'detection' occurring?
Category: Treating CML

Replies: 5

Last updated: 12 April 2021
Ontasigna on 10 April 2021

Category: Treating CML

Replies: 3

Last updated: 11 April 2021

Bcr abl slightly increased
by alexmcpee (Apr 11)

No difference at all. On paper yes in reality no. As far as I understand anything under 0.01% is inconsequential.

by Ontasigna (Apr 11)

Thank you sandy.

by sandy craine (Apr 10)

Do not worry.... there is no significant difference in these results. Sandy

by Ontasigna (Apr 10)

Hi all,
My bcr abl is slightly increased from 0.0014 to 0.0029
Bit worried. Kindly suggest
Category: Treating CML

Replies: 3

Last updated: 11 April 2021
johnw1001 on 18 March 2021

Category: Treating CML

Replies: 0

Last updated: 18 March 2021

ASH Conference Proceedings December 2020
by johnw1001 (Mar 18)

Hi All,
For anyone new to CML it might be good to explain that every year in December in United States there is a major conference for hematologists worldwide where any advances in treatments
Category: Treating CML

Replies: 0

Last updated: 18 March 2021
Mari_lyn on 28 February 2021

Category: Treating CML

Replies: 7

Last updated: 12 March 2021

Why am I so slow...
by Mr_T1987 (Mar 12)

Evening,
I was a slow responder to treatment. Started on Imatinib which caused me all sorted of issues. I changed to Dasatinib which was working but never got me into MMR and then developed a

by AlastairC (Mar 9)

Hi
There are quite a few people who have stuck on a plateau of BCR-ABL results for 6-9 months and then it has suddenly dropped. In my case I was around 0.6% from about 9 months post diagnosis to 18

by Mari_lyn (Mar 8)

Thank you for your advice. That’s exactly what my dr said as well, that he wants to await the next results. And that’s it is not a lineair line but that it moves in sort of a ‘wave

by ColoradoGuy (Mar 4)

It looks like you are just past 6 months and at 11%. I believe the target is under 10% at least by six months. That being said I don't think Dasatinib has made it's full effect
Category: Treating CML

Replies: 7

Last updated: 12 March 2021
MartinZA on 22 February 2021

Category: Treating CML

Replies: 3

Last updated: 22 February 2021

In praise of Vitamin D
by scuba (Feb 22)

Martin - let us know your vitamin D level test results.

by MartinZA (Feb 22)

Hi scuba
Thank you so very much for the detailed post and for the explanation. Practical and extremely helpful advice as always! I'm going to aim for that level of Vitamin D between 50 and 100 and

by scuba (Feb 22)

It's near impossible to overdose on D to toxic levels while supplementing on 10,000 IU's per day or less. The body itself can make between 10,000 - 20,000 IU's on its own when exposed to

by MartinZA (Feb 22)

Hi everyone
A year or so ago I posted about my BCR-Abl levels and my view that it had something to do with Vitamin D. In summary, I was stuck on 0.03% for a very long time (over a year) before
Category: Treating CML

Replies: 3

Last updated: 22 February 2021
israel on 17 June 2019

Category: Treating CML

Replies: 9

Last updated: 20 February 2021

Looking to reduce dosage of Imatinib 600mg to 400mg
by israel (Feb 20)

1.03N/AN/AN/A20150.063N/AN/AN/A20160.070.02N/AN/A20170.0890.0132N/AN/A20180.020.0091N/AN/A20190.00.00.00.020200.000250.0120.00820.00420210.011
* N/A = Not available

by israel (Jan 28)

Hi,
Quick update on my dose reduction journey. I had two more PCR tests since I last posted to this thread:

- November: 0,0073
- January: <0,00025

The tests weren't

by israel (Aug 18)

Hi all,
I want to give an update on my treatment since I last opened this thread.
In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg

by israel (Jun 19)

Hi Poppert!
I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps
Category: Treating CML

Replies: 9

Last updated: 20 February 2021
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