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Sandrahervieux on 13 May 2020

Category: Treating CML

Replies: 6

Last updated: 16 May 2020

Side effect of Imatinib?
by kat73 (May 16)

Don't know how I missed this - sorry. Yes, yes, yes, to all your feelings and symptoms. I did, indeed, have them on imatinib. All comments you've received are great.

by Felix (May 13)

Hi Sandra ,I had most of those side effects plus really bad diarrhoea ,hooded eyelids and a rash.I thought that was just how it was going to be on Imatinib.Some did subside over time .I was changed

by johnw1001 (May 13)

Sandra,
I found the first six months after diagnosis to be quite challenging.The bone pain led to some sleepless nights but as one medic said to me the drug is doing its job and your bone marrow is

by AlastairC (May 13)

Hi Sandra, at 3.5 months a lot of the imatinib side effects (bone pain, fatigue etc), drop off to an acceptable level for many patients.Some have to change to another TKI. Despite these not being
Category: Treating CML

Replies: 6

Last updated: 16 May 2020
David Fitz on 14 May 2020

Category: Treating CML

Replies: 4

Last updated: 16 May 2020

Case report of CML and COVID-19, dasatinib (and imatinib) may be protective
by kat73 (May 16)

Now we're talkin"! All right! This would please me no end - we have a superpower!

by alexmcpee (May 14)

Very interesting read. I am on Nilotinib and as far as I understand very similar (more powerful) than imatinib. It did mention it against SARS in this doc too.

by Nimbus2 (May 14)

Thank you for posting, David. I understand that dasatinib is a broad-based kinase inhibitor. It appears here that the inhibiting of Abl1 and Abl2 pathways may be helpful. Perhaps it is early

by Dustylloyd (May 14)

Hi David,
in February this year my wife who I’ve been married to for 36 years was totally flattened by some virus and had to take 2 weeks off work, she was having really bad headaches, very
Category: Treating CML

Replies: 4

Last updated: 16 May 2020
Ontasigna on 10 May 2020

Category: Treating CML

Replies: 2

Last updated: 13 May 2020

Intermittent Fasting and acidity
by Ontasigna (May 13)

Thanks Scuba!

by scuba (May 10)

I have had zero acid reflux during fasting. I do get the "rumbles" as our bodies are trained to expect food at certain times of the day and begin secreting digestive enzymes in

by Ontasigna (May 10)

Hi Scuba
I have read many of your posts on intermittent fasting and its benefits.
I read an article which states- one of the side effect of IF is increase in stomach acid causing acid reflux and
Category: Treating CML

Replies: 2

Last updated: 13 May 2020
philmc on 5 May 2020

Category: Treating CML

Replies: 6

Last updated: 8 May 2020

Not responding quickly enough – switch TKI?
by philmc (May 8)

Thanks all for your responses. Very useful to hear about your experiences.

by Tbrand (May 7)

I like Imatinib, it’s the first CML agent. People have been on imatinib over 20 years without issues. If it works for you without side effects, why change? Your almost there! Plus the price is

by israel (May 6)

I take Imatinib and also didn’t reach the optimal standards in the first two years after diagnosis. Long story short, in the first two years I was feeling very well with little to no side

by sandy craine (May 6)

Hi Phil,
There are many people who do not reach 'optimal' PCR ratios at 3; 6 or 12 months, yet they often go on to respond 'optimally' in the end, but it takes them a little more
Category: Treating CML

Replies: 6

Last updated: 8 May 2020
POPPY on 5 May 2020

Category: Treating CML

Replies: 2

Last updated: 5 May 2020

Lowered Dose Dasatinib 70mg
by scuba (May 5)

Hi Alex,
It is not that lower dose dasatinib is "more effective" per se. It is that each of us who are prescribed dasatinib have a unique dose threshold beyond which more is not more

by alexmcpee (May 5)

Their is a lot of evidence that lower dose Dasatinib is more effective. It sounds counter intuitive but from what I understand it is a threshold drug so you will no doubt see better results on lower

by POPPY (May 5)

Hey All,

I've written on another thread before.
My boyfriend switched to Dasatinib (prev Nilotinib) in Feb 2020.
Below are his bcr abl counts:
Dec 2019 - 0.05%
Mar 2020 - 0.10% (on
Category: Treating CML

Replies: 2

Last updated: 5 May 2020
teddyb on 3 February 2020

Category: Treating CML

Replies: 13

Last updated: 5 May 2020

Going from Imatinib to Sprycel
by yowandbm (May 5)

Philip,
After BMT I developed serious hemorrhagic gastritis on Sprycel. Dr told me this is a common issue with it.
Discuss on it thoroughly.

by Ray Sell (May 4)

Hey Phillip How long were you on imatinib, and what dose? What dose Sprycel are you on? Blood draw was today, and results in 2 weeks. Thinking I might change to Sprycel. Oncologist

by teddyb (May 2)

My first Sprycel results are back, after switching from 400mg Glivec to 50mg Sprycel
Month ABL1
1 76
2 17
3 3
6 0.1
9 0.02
12 0.03
15 0.04
18 0.01
21 0.

by scuba (Feb 20)

Ray - it's good you increased your vitamin D level. You started out where I did - 16 ng/ml.
Looking at your numbers, my thinking is you are at a plateau and switching to sprycel could very well
Category: Treating CML

Replies: 13

Last updated: 5 May 2020
Haneesha on 13 April 2020

Category: Treating CML

Replies: 3

Last updated: 15 April 2020

What does Dasatinib taste like?
by David Fitz (Apr 15)

I’ve never noticed any taste at all. Completely neutral.

david.

by Haneesha (Apr 15)

Thankyou Martin. Appreciate the help.
I hope you get better soon! :)

by MartinZA (Apr 15)

Hi there
I went the opposite way- changed from dasatinib to imatinib almost two years ago. From what I remember, the Sprycel tablets I had had very little taste... they were certainly not sweet

by Haneesha (Apr 13)

Hi All,
I was wondering if anyone using Dasatinib (Bristol-Myers Squibb) on this forum has tasted the medicine?
I got switched from Gleevac to dasatinib recently and I cant help but wonder why
Category: Treating CML

Replies: 3

Last updated: 15 April 2020
snowman 35 on 1 April 2020

Category: Treating CML

Replies: 10

Last updated: 12 April 2020

Should I Try TFR now ?
by hannibellemo (Apr 12)

Great information from Prof. Clark. Thank you for posting this.

by kali (Apr 2)

Thank you for this link. Great update!

by snowman 35 (Apr 2)

Ok Alaistai C I will see it!! Thanks!

by AlastairC (Apr 2)

This link is a video of a talk by Prof Richard Clark at the UK patient day last September. It may provide some useful information for your discussions with your doctor.
Category: Treating CML

Replies: 10

Last updated: 12 April 2020
cousineg2 on 11 April 2020

Category: Treating CML

Replies: -1

Last updated: 11 April 2020

Hematopoietic stem cell transplantation using single UM171-expanded cord blood

Category: Treating CML

Replies: -1

Last updated: 11 April 2020
Ontasigna on 11 December 2019

Category: Treating CML

Replies: 17

Last updated: 9 April 2020

High WBC - cml progressing??
by Tricky109 (Apr 9)

Hi Brett can I ask how you are getting on now with lymphocytes?

by Tricky109 (Feb 21)

Brett can i ask please how you are getting on now? Im in exact same position.

by Ontasigna (Dec 18)

Hi Korila,
Yes, My first CBC showed TLC - 16000.
I had to get CBC again at NABL accredaited lab to be sure on the count. That's when I got 11.53 with abs lym count : 3.54 dated 12 Dec
On 17th Dec I

by Brett0503 (Dec 17)

I’m in the same boat with my lymphocytes increased to 6.78 when I had bloodwork last week with wbc count of 12.8
my next bloodwork is on monday 12/23.
I read online that Dasatinib induces
Category: Treating CML

Replies: 17

Last updated: 9 April 2020
Trevorp93 on 21 March 2020

Category: Treating CML

Replies: 1

Last updated: 21 March 2020

Need advice on treatment!
by Felix (Mar 21)

Hi ,with those results which are brilliant ,no way would I take that dose ,there is no need for it .When I changed from Imatinib to Dasatinib my Doc wanted me to start on 100 mg but I said no way

by Trevorp93 (Mar 21)

Hi everyone! I had two question regarding treatment.
First. Does anyone know the effects of being on 140 mg Sprycel for long periods of time?
Second I had questions of why I was put on such a
Category: Treating CML

Replies: 1

Last updated: 21 March 2020
mayita on 13 March 2020

Category: Treating CML

Replies: 5

Last updated: 14 March 2020

IT351 mutation
by David Fitz (Mar 14)

Yep - officially it’s still 45mg I believe. Ariad / Incyte really shot themselves in the foot because pricing was based upon a 45mg dose.
That turned out to be too much, and their reps can

by RC Kirk (Mar 14)

I seem to remember reading that the new starting dose is 15 mg/day, whereas the original was 45. Hopefully the side effects are much reduced at 15 mg.
Edit: I think maybe this is what I

by johnw1001 (Mar 14)

Hi,
In addition to Davids comments it is worth stating soon after giving approval in USA the FDA issued a so called "black box warning" largely based on the risks of vascular occlusions (

by mayita (Mar 13)

Thank you David,
So it sounds that I will be given Ponatinib in preparation for the BMT. I hope my body can take it.
Thank you,
Category: Treating CML

Replies: 5

Last updated: 14 March 2020
David Fitz on 4 March 2020

Category: Treating CML

Replies: 0

Last updated: 4 March 2020

European Leukaemia Net 2020 Treatment Guidelines for CML
by David Fitz (Mar 4)

You may have spotted that ELN have released their long awaited update to their guidelines for treating CML. It’s quite a long document, but I’ve given it a read and here are some of the
Category: Treating CML

Replies: 0

Last updated: 4 March 2020
Nshah on 16 February 2020

Category: Treating CML

Replies: 6

Last updated: 18 February 2020

Missed imatinib doses
by Nshah (Feb 18)

Thanks dear 😊

by Philiptibbs (Feb 18)

Your fine. I miss a dose of my Sprycel once a week when I have some Beers on the weekend and my levels are 0.0312 so you should be fine .

by Nshah (Feb 18)

Wow that’s great, do you still take medicine

by dftitus (Feb 18)

My CML was caught very early. My first PCR was 0.1264. My second PCR (3 months later), showed a 3-log reduction. It was undetectable at 6 months and has stayed that way ever since.
Category: Treating CML

Replies: 6

Last updated: 18 February 2020
hannibellemo on 17 February 2020

Category: Treating CML

Replies: 2

Last updated: 18 February 2020

6 months of alternate day treatment with 20 mg. Sprycel
by Philiptibbs (Feb 18)

I'm on 70mg Sprycel every day and I was just at 0.0312 and my Doc said if the next test is same or lower I can drop to 50mg. Thing is I have inflamation in all my joints. My muscles ache and my

by kat73 (Feb 18)

My thoughts on the inflammatory tissue result: I can't help but wonder if this doesn't fall into the category of weird stuff that TKI's do that screw up tests and things that make

by hannibellemo (Feb 17)

I just got the results from my recent (2/13/2020) PCR. In November, after 3 months of alternate day therapy in which my results went from CMR (on 20 mg every day) to 0.0032, my most recent result is
Category: Treating CML

Replies: 2

Last updated: 18 February 2020
Batman0424 on 4 February 2020

Category: Treating CML

Replies: 8

Last updated: 16 February 2020

Confused - treatment change
by Batman0424 (Feb 16)

So we saw (and are switching to) Dr Mauro last week and he agreed that my wife should continue on Dasatinib @ 50mg. We will do another PCR test in 6 weeks, which will be 2 continuous months on

by Batman0424 (Feb 4)

Thank you Sandy for clarifying / confirming my assessment.

I do not know why a PCR test was ordered when my wife was only treated for a total of 24 days spread over 2 months

by sandy craine (Feb 4)

Hi,
If I understand your situation and concerns correctly, I suggest you take a look at our PCR booklet which may help you when trying to understand your wife's test results.
At diagnosis

by Batman0424 (Feb 4)

Thank you, Scuba - your response was very helpful and reassuring.
Currently, my wife seems to be tolerating 50mg of dasatinib relatively well. Her panels look great at the moment on 50;
Category: Treating CML

Replies: 8

Last updated: 16 February 2020
stefanolucas on 13 February 2020

Category: Treating CML

Replies: 2

Last updated: 13 February 2020

Question , please advice
by stefanolucas (Feb 13)

Yes , at the beginning she had began her treatment with Imatinib but she lowed to 20% not in a fast way how it shoulded be doc says , after she reached 20% from this point Imatinib didn’

by ColoradoGuy (Feb 13)

A little background regarding the resistance to Imatinib would be helpful. Did her numbers climb in two consecutive tests significantly? Was mutation testing performed?
I think that the

by stefanolucas (Feb 13)

Hello ,
As a background story which are in my other threads , about my sister ( 21yrs) who was diagnosed in June,2018 with CML and had a resistance to imatinib after we switched to
Category: Treating CML

Replies: 2

Last updated: 13 February 2020
johnw1001 on 10 February 2020

Category: Treating CML

Replies: 0

Last updated: 10 February 2020

What happened to Bafetinib?
by johnw1001 (Feb 10)

Bafetinib (N-187) which is an inhibitor of BCr-Abl was developed as an experimental drug in Japan and then licensed for development by Cayman Chemical in USA after being given orphan drug status in
Category: Treating CML

Replies: 0

Last updated: 10 February 2020
Sonia0609 on 6 January 2020

Category: Treating CML

Replies: 9

Last updated: 9 January 2020

Curcumin
by scuba (Jan 9)

I take 5,000 IU's vitamin D3 one day; 10,000 IU's the next day in winter.
In spring I switch over to just 5,000 IU's every day until fall.
The above is calibrated by vitamin D tests

by JPD (Jan 9)

I know you've answered this before - but what levels of curicumin (and D3 for that matter) are you currently taking? @scuba

by alexmcpee (Jan 7)

Thank you Scuba!
I bought some Curcumin with pepper from Amazon and it has a heart warning on the label and because Tasigna also has a heart warning I was reluctant to take it just in case it caused

by scuba (Jan 7)

I continue to take C3 complex version of Curcumin.
Category: Treating CML

Replies: 9

Last updated: 9 January 2020
Ontasigna on 8 January 2020

Category: Treating CML

Replies: 3

Last updated: 9 January 2020

Nilotnib : Dose reduction
by Ontasigna (Jan 9)

Thanks David. Last 9 months I am in mr4

by VioS (Jan 8)

Helo,
after 1 year and 10 months of tasigna (on 12 december) because of side effects like constipation, prostatitis and tinitus, i reduce my dose to in half, and after a week i stayed 3 days free of

by David Fitz (Jan 8)

Hi,
I wouldn't be concerned about slightly raised levels of white cells. Our bodies produce more of these when we need to fight infections, and around this time of year (in the northern

by Ontasigna (Jan 8)

Hi all,
It's been an year I started off with Nilotnib 400mg BD. My PCr as of 26th Dec 19 - 0.00555
I have appointment with my Doc tom. Can I ask for dose reduction?
My lmyphocytes and esinophils are
Category: Treating CML

Replies: 3

Last updated: 9 January 2020