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bendicco on 10 June 2020

Category: Treating CML

Replies: 8

Last updated: 7 July 2020

CBD
by Crfharris (Jul 7)

Thanks for the information. Once again, it’s so encouraging to hear from others who have been on imatinib for such a long period of time. This site has been so helpful for me.

by andycat (Jul 7)

hello,
I have some pain in my left leg as well, I take imatinib 200 mg a day for cml 14 yrs. this month! So a lot to be grateful for but we really could have done without

by Crfharris (Jun 15)

Olivia,
Thank you for sharing that with me. My pain is also at night. Still just one leg (left also) and arms are fine.
This forum is so helpful . Thanks to everyone who contributes.

by Olivia (Jun 15)

I have been on imatinib for over 10 years now, and I certainly get pains in one leg. It's usually the left leg, but some days (I say days, but it's much more common and annoying in the
Category: Treating CML

Replies: 8

Last updated: 7 July 2020
sandy craine on 12 June 2020

Category: Treating CML

Replies: 3

Last updated: 26 June 2020

iCMLf 4 Webinars for June/July - CML during the COVID-19 crisis
by sandy craine (Jun 26)

For details of one of the next iCMLF webinars on July 2nd and how you can access it see below:
On July 2nd Professor Gianantonio Rosti will be sharing his experience and perspectives.
Management

by sandy craine (Jun 25)

Hi Justine,
Try logging on to iCMLf website- I think they are probably available.
http://icmlf.org
Sandy

by Justine (Jun 24)

Hi Sandy, I missed today's, are the webinars being recorded and if so how do we access it? Thanks

by sandy craine (Jun 12)

The International CML Foundation is holding a series of four webinars focused on the care of people with CML during the COVID-19 crisis.
Beginning in late June, for four weeks, we will be hosting
Category: Treating CML

Replies: 3

Last updated: 26 June 2020
Ontasigna on 17 June 2020

Category: Treating CML

Replies: 7

Last updated: 23 June 2020

Tasigna : Extreme fatigue and Petechiae (CML Progressing???)
by sandy craine (Jun 23)

You do not say how low you D3 status was. It takes some time to increase D3 (week/months depending on daily dose). The following article from Orthomolecular news may be of interest to some:
'How

by Sorin (Jun 21)

I also felt very tired on Tasigna but I did the tests for Vitamin D3 and they came out very low .
I supplemented with vitamin D3, Selenium, Zinc, Vitamin B12 and I feel very good now.

by nazarm4 (Jun 18)

Hello .i had the same issues .have your doctor change your medication to a different tki .it seem you have allergic reaction from it .hope you feel better soon .

by nazarm4 (Jun 18)

Hello .this is what I have tried and it works..stay positive.eat lots of food with iron .drink lots of water daily .have your doctor check you phosphorus and phosphate .and vitamin d and iron level
Category: Treating CML

Replies: 7

Last updated: 23 June 2020
nazarm4 on 18 June 2020

Category: Treating CML

Replies: 1

Last updated: 18 June 2020

Cml
by johnw1001 (Jun 18)

Your comment is of interest because iron intake through diet promotes healthy red blood cell development and especially maintains good levels of hemaglobin.Some have suggested that adequate iron

by nazarm4 (Jun 18)

Hello every one .have lots of side effects from
gleevec .
found a solution =eat lots food contains iron .
Category: Treating CML

Replies: 1

Last updated: 18 June 2020
andre82 on 11 June 2020

Category: Treating CML

Replies: 2

Last updated: 11 June 2020

Setback with imatinib, now on Nilotinib
by ColoradoGuy (Jun 11)

I would look into Dasatinib instead as Nilotinib approaches the disease very similarly as Imatinib. It may require being on the phone for a while and possibly arguing with your oncologist but

by alexmcpee (Jun 11)

Hi Andre,
I does take time to adjust. Your cbc looks good now you have switched to Nilotinib. Like you I had high platelets at diagnosis 900 or something and wbc of 330. All have been normal for the

by andre82 (Jun 11)

Hi guys.
Hope you all are doing well!
I was diagnosed this February.
At diagnosis, BCR / ABL was 44.3 and WBC was 94
After 1 month of 400mg imatinib BCR / ABL was 25, WBC 2,14 , but Plt
Category: Treating CML

Replies: 2

Last updated: 11 June 2020
Tedro on 5 June 2020

Category: Treating CML

Replies: 8

Last updated: 9 June 2020

Stopping Sprycel
by Tedro (Jun 9)

Sorry about the link. I guess I coulda selected just a few.

I'd like to ask: If this is what my largest organ(?) the Skin looks like (not unbearable), what do my insides look like? and,

by Tedro (Jun 9)

Thank you ALL very very much.
I had not realized there were replies until a recent email notice.
Again, thank you!
I have read at least one paper talking about Dasatinib as treatment for

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!

by Tedro (Jun 9)

Hi,
Thank you, very much.
Best Regards!
Category: Treating CML

Replies: 8

Last updated: 9 June 2020
EvaH on 4 June 2020

Category: Treating CML

Replies: 0

Last updated: 4 June 2020

Reminder: Order your meds in good time
by EvaH (Jun 4)

Hi all,
Covid19's main impact for CML folk would appear to be in disrupted supply chains and distracted staff in the supply chain.
I started to try to get more imatanib over 10 days ago, a
Category: Treating CML

Replies: 0

Last updated: 4 June 2020
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