Update: An investigation into the use of app technology in patients with CML

Managing CML for treatment-free remission (TFR): a proposal from the GIMEMA CML WP

Ruxolitinib Shows Noteworthy Responses in Patients with Atypical CML

Do persons with chronic myeloid leukaemia have normal or near normal survival?

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David Fitz on 26 February 2020

Category: Uncategorised

Replies: 1

Last updated: 27 February 2020

PinnedWelcoming Richard Willoughby as a new Trustee of CML Support
by snowman 35 (Feb 27)

Welcome Richard!

by snowman 35 (Feb 27)

Welcome Richard!

by David Fitz (Feb 26)

We have invited Richard Willoughby (Richard42) to become a new Trustee of CML Support UK, and he has kindly accepted.
Much of the work we do at CML Support is “behind the scenes”
Category: Uncategorised

Replies: 1

Last updated: 27 February 2020
vmsantoso on 28 February 2020

Category: Other conditions

Replies: 0

Last updated: 28 February 2020

Tachycardia and leg edema
by vmsantoso (Feb 28)

Hi. My bf got diagnosed of CML last December, and been stopped medication for a while because Haemoglobin was too low.
He started medication again for about 8 days now and we’re still
Category: Other conditions

Replies: 0

Last updated: 28 February 2020
Nimbus2 on 24 February 2020

Category: Uncategorised

Replies: 10

Last updated: 27 February 2020

Imatinib side-effects
by Vijay Kumar Verma (Feb 27)

Thanks,i checked about raynaud's syndrome .

by Vijay Kumar Verma (Feb 27)

Its really difficult for me (psychologically too) when people around me enjoying while i have feeling of coldness(some time unbearable)

by David Fitz (Feb 27)

"Numb or cold toes and fingers" is a recognised uncommon side effect of imatinib (see package leaflet - https://www.medicines.org.uk/emc/files/pil.5566.pdf)

by Nimbus2 (Feb 27)

I do not have a solution. I think that "feeling cold" is not recognised as an imatinib side-effect. I was feeling very cold whenever I got into a swimming pool typically heated to 28°C
Category: Uncategorised

Replies: 10

Last updated: 27 February 2020
Sd on 23 February 2020

Category: Side effects

Replies: 2

Last updated: 27 February 2020

Thrush
by Sd (Feb 27)

John,
Thanks so much for your help and suggestions. It turns out that I had a thrush first, which was successfully treated with the nystatin. I now have stomatitis, probably due to imatinib. I am on

by johnw1001 (Feb 27)

The usual approach is to try a course of Canisten- clotrimazole normally as a cream available off prescription I believe;if it re- occurs then it might be useful to seek medical advice as to whether

by Sd (Feb 23)

This has probably been discussed, but I am wondering about experiences some of you have had with thrush....treatment, duration of symptoms, recurrence, ways to ease the pain.
Category: Side effects

Replies: 2

Last updated: 27 February 2020
Vikram on 20 November 2018

Category: Clinical trials

Replies: 109

Last updated: 27 February 2020

PLEASE REPLY
by Vikram (Feb 27)

Hi karthikeyan...
I asked doctors Manny time reduces dose 600 mg to 400 mg..... ( last 8 years UNDETACTABLE)
Answer same no.....
I am wrong without doctor advice drug on off last 8 month.... (600

by Vikram (Feb 27)

Okk......
Your age....
Your treatment hospital?????
Government / private.......

by Karthikeyan (Feb 26)

Hi also remember,the side effects are much less in imatinib,when compared to dasatinib or nilotinib.also there is no free program from Novartis for nilotinib.for me imatinib is far better than

by Vikram (Feb 26)

Karthikeyan...
Government hospital but cancer unit... (big unit) (m p shah) ahemdabad अहमदाबाद
Category: Clinical trials

Replies: 109

Last updated: 27 February 2020
scuba on 25 February 2020

Category: Uncategorised

Replies: 7

Last updated: 27 February 2020

Virus' do not like the sun ....
by scuba (Feb 27)

Some observations:
https://time.com/5610878/2018-2019-flu-season/
https://www.livescience.com/new-coronavirus-compare-with-flu.html
1. Coronavirus is a virus that affects the lungs - similarly to

by johnw1001 (Feb 27)

In the UK about 8000 people die each year from secondary conditions as a result of contracting flu and as Scuba suggests these are usually those with weak immune systems and those with very poor

by mamodei (Feb 26)

There is a middle ground here. No, not many people have died, but then the virus is not widespread and we don't have a vaccine. We should not be panicking and locking ourselves in

by Nimbus2 (Feb 26)

The British Daily Mail cites a government report which estimates a worst-case of 80% of the United Kingdom population being infected and 500,000 people dying. The Financial Times All Share
Category: Uncategorised

Replies: 7

Last updated: 27 February 2020
renz on 27 February 2020

Category: Other conditions

Replies: 1

Last updated: 27 February 2020

Just signed up. Question about "dry tap" bone marrow tests.
by David Fitz (Feb 27)

Perhaps your doctor meant fibrosis, when talking about "scar tissue". You can read a bit more about that here:
http://www.mpnresearchfoundation.org/2014-Fibrosis-focus-area-two
To test for

by renz (Feb 27)

Hi, I just hit my 6 month treatment mark on SpryCel and doc had me repeat the bone marrow test. 6 months ago it came up as a "dry tap", and I think he was expecting it to be not dry by now
Category: Other conditions

Replies: 1

Last updated: 27 February 2020
Jason Graves on 26 February 2020

Category: Uncategorised

Replies: 2

Last updated: 27 February 2020

Bmt
by Jason Graves (Feb 27)

Typically they would stop the tki until her platelets went above 50, witch sometimes took 3 months. This is what we have fought now for a year and a half. I believe she’s tried 5 tki

by scuba (Feb 26)

What was the protocol process the doctor followed when her CBC dropped? Specifically what blood cell dropped? platelets? Neutrophils? other?
After the blood count dropped, what did the doctor do?

by Jason Graves (Feb 26)

It official we my wife will be getting a bmt. All the tki’s made her CBC drop into the danger zone and her bcr came back with a 15% increase in 3 months. Any advice?
Category: Uncategorised

Replies: 2

Last updated: 27 February 2020
jhorne1 on 1 December 2019

Category: About CML

Replies: 28

Last updated: 27 February 2020

Recently diagnosed. Many questions.
by jhorne1 (Feb 27)

Thanks Scuba! My ONC mentioned this is a EMR. Is there data that shows long term response IRT EMR?

by scuba (Feb 27)

Cool. You're almost in the zone (not the danger zone).

by jhorne1 (Feb 26)

Hi all, excited to let everyone know after 83 days on sprycel that my PCR went from 352% to .9%!!!!!

by jhorne1 (Jan 12)

Awesome. Thanks for the explanation.
Just got my blood work back.
- WBC went from 3.6 to 3.4. Platelets are back to a normal range.
-----------------
Haven't had the
Category: About CML

Replies: 28

Last updated: 27 February 2020
POPPY on 17 December 2019

Category: Uncategorised

Replies: 14

Last updated: 26 February 2020

Poor Response in Nilotinib
by ColoradoGuy (Feb 26)

That's Great News! I have gone the other way (Dasatinib to Nilotinib) and my last result was 0.12 which is very close to what prompted you to start this thread so personally I find this

by POPPY (Feb 24)

Hi All,
Would like to give an update, his PCR test came back as 0.05%! However, he chose to switch to Dasatinib due to side effects on Nilotinib.
It's been almost a week on 100mg Dasatinib

by alexmcpee (Dec 21)

Yeah change doctor immediately. I’ve been on Nilotinib for 18months only just approached 0.118% which is nigh on MMR like your boyfriend.
Get a second opinion immediately many people don

by Jens (Dec 18)

I've been on imatinib för 2½ years and this october my pcr went to 0.23% and then 0.4% in november. I got to switch to nilotinib (300mg x 2), my doctor did not suggest anything about a
Category: Uncategorised

Replies: 14

Last updated: 26 February 2020
David Fitz on 18 December 2019

Category: Uncategorised

Replies: 3

Last updated: 26 February 2020

New site feature: Direct Messaging
by Vikram (Feb 26)

I edit my post but no edit....

by Tater1 (Dec 24)

Thank you. This is an awesome feature....

by alexmcpee (Dec 21)

Awesome stuff David. I am sure it’s going to be a very helpful addition.
Alex

by David Fitz (Dec 18)

Private / Direct Messaging has been in the works for a while and has been a feature often requested. I’m pleased to say that today we have released this new feature in “beta” form
Category: Uncategorised

Replies: 3

Last updated: 26 February 2020
sandy craine on 14 March 2012

Category: Uncategorised

Replies: 7

Last updated: 25 February 2020

Acid Reflux/Heartburn
by sandy craine (Feb 25)

Hi Eva,
I still take ACV (with mother) whenever I have any signs of indigestion/reflux etc. I also find my digestion suffers adversely from eating processed foods especially those made from white

by EvaH (Feb 24)

Ive been getting a lot of reflux lately - I also have bronchitis, might it have to do with the coughing?
Didnt have it bad before but I wake up in the middle of the might about to throw up. I've

by Wendy Turner (Feb 23)

Hi Sandy

I've just read your post with interest as I have begun to get indigestion problems after being on Imatinib for 4 months. I tried Omeprazol for 5 days, it made no difference

by teddyb (Apr 15)

Thanks for the tip Sandy, will give it a try for my indigestion when eating fatty or spicy food, got nothing to lose :)
Teddy
Category: Uncategorised

Replies: 7

Last updated: 25 February 2020
alexmcpee on 20 February 2020

Category: Uncategorised

Replies: 10

Last updated: 25 February 2020

Pesky eye floaters
by alexmcpee (Feb 25)

Many thanks Eva
I am going to mention it to my consultant in May when I next see him to see what he says/recommends. Yes I had a wbc of 330 at diagnosis and I’ve had floaters since this time,

by EvaH (Feb 24)

Probably harmless as others have said - however, may I ask if you remember what white blood count you were diagnosed with?
I had some issues with neovessels but this is a very rare side effect of

by snowman 35 (Feb 20)

Your welcome my friend!

by snowman 35 (Feb 20)

Maybe that 's why I notice them more David! Nice thought!
Category: Uncategorised

Replies: 10

Last updated: 25 February 2020
scuba on 27 February 2018

Category: Food & fitness

Replies: 29

Last updated: 24 February 2020

Fasting and Cancer part 2
by EvaH (Feb 24)

I've taken imatanib while fasting in a meditation centre. Its not that pleasant but its doable and my nausea passed in about 30 mins, it was helpful to be lying down and ready to sleep after

by Mixail (Jan 19)

Thank you Scuba.

by scuba (Jan 19)

Unfortunately, imatinib often causes nausea and upset stomach. Fasting would not prevent imatinib from working (or any other TKI), but keeping imatinib "down" would likely be a problem.

by Mixail (Jan 19)

Hello Mr. Scuba, I am on Imanatib would fasting prevent Imanatib from working. I have reached a plateau. I have been at .01% for almost a year. My doctor had informed me that he may switch or
Category: Food & fitness

Replies: 29

Last updated: 24 February 2020
VickyK. on 22 February 2019

Category: Side effects

Replies: 12

Last updated: 24 February 2020

Tasigna hair loss
by VickyK. (Feb 24)

Thank you Denise for all your tips & advice!Good luck to you too!
Best,
Vicky

by VickyK. (Feb 24)

Thank you Beaners for your advice!
All the best to you!
Kind regards,
Vicky

by VickyK. (Feb 24)

Thank you very much for sharing your experience with me. I have an appointment with my doctor on Thursday, I will discuss with him the dose reduction.
Thanks again & all the best!
Kind regards,

by VickyK. (Feb 24)

Dear Koralia,
I apologize for the delay in my reply, I was with a flu for over 10 days and it was really bad...I'm now slowly recovering.. Yes, the problem in hair loss has been restored but the
Category: Side effects

Replies: 12

Last updated: 24 February 2020
ashbryant on 23 February 2020

Category: Uncategorised

Replies: 4

Last updated: 24 February 2020

Advice. Questions.
by scuba (Feb 24)

CML is a rare disease - worldwide about 0.7 - 1.0 person in 100,000. In the U.S. last year about 8500 new cases were diagnosed.
The odds you have CML from your symptoms alone are low. Very low.

by Nimbus2 (Feb 24)

I well understand the Googling mentality but it can lead to some very wrong conclusions. Nonetheless, I would keep a check for any increase in your white blood count and neutrophils. I did self

by ashbryant (Feb 23)

Thank you for your response! I do have an enlarged spleen and an enlarged liver but my white blood count has been fine. The last time my neutrophil was checked was October and it was right on the

by Nimbus2 (Feb 23)

Hello Ashbryant. I did some searching on your symptoms and I can well see how you considered CML to be one of the possibilities. Sooner or later with CML you would be seeing a rise in the white
Category: Uncategorised

Replies: 4

Last updated: 24 February 2020
givethanks on 23 February 2020

Category: Uncategorised

Replies: 4

Last updated: 24 February 2020

Does sprycel dose need adjusting
by givethanks (Feb 24)

I don’t know her blast cell count at time of diagnosis. I do know that her platelets count was 1,000 but all other labs were in normal range. Thank you so much for all your

by scuba (Feb 24)

What were her initial blood counts at diagnosis? blast cell count, in particular?
(Your mom should have her vitamin D level tested and if low, she should supplement with D3 to raise it to be above

by givethanks (Feb 23)

Thank you for your response. I think the 140 dose was prescribed because she wasn’t in the chronic phase but rather accelerated phase. Is the 50mg dose for chronic phase? When her

by scuba (Feb 23)

You are correct in being concerned. Sprycel is a potent TKI and can often times result in severe myelosuppression (low blood counts). You need to be vigilant and watch blood counts closely - at
Category: Uncategorised

Replies: 4

Last updated: 24 February 2020
Aeje10327 on 21 December 2019

Category: Uncategorised

Replies: 8

Last updated: 23 February 2020

Pcr question
by Batman0424 (Feb 23)

Good to know. My wife is on 50 right now due to side effects and Dr Mauro is monitoring.

by Aeje10327 (Feb 23)

Regarding the 50 mg dose? He said they are using 100 right now and lower if needed to manage side effects but that there isnt enough data yet to support starting at 50.

by Batman0424 (Feb 23)

Have you met with Dr Mauro yet? Wondering how it went and what his opinion was. My wife is also now seeing Dr Mauro (her first appointment was also in Feb).

by Aeje10327 (Dec 21)

Thank you so much for the information. I have scheduled an appointment with Dr. Mauro for February to see what his thoughts are. Wish he could see me sooner.
Category: Uncategorised

Replies: 8

Last updated: 23 February 2020
Karthikeyan on 22 February 2020

Category: Children & young people

Replies: 0

Last updated: 22 February 2020

Wrong pcr lab reports
by Karthikeyan (Feb 22)

Hello, second time i got erroneous pcr report.did anybody have this experience.
Category: Children & young people

Replies: 0

Last updated: 22 February 2020
Alaina on 12 February 2020

Category: Uncategorised

Replies: 6

Last updated: 21 February 2020

Tasigna + Exercise
by Alaina (Feb 21)

I decided to see a cardiologist for the irregular beat thing. He said I have mitral valve prolapse with some regurg. Nothing I didn't already know. He offered a prescription for a beta blocker but

by Alaina (Feb 21)

I started off drinking 3 Liters of water per day 4 years ago. After reflecting, I believe I'm now only drinking 1.5 Liters per day. I didn't have these symptoms when I first began Tasigna. Thought

by Alaina (Feb 21)

Ok, thank you snowman. I will be more mindful of my water intake.

by cmljax (Feb 16)

I have been on Tasigna since October 2016. I have maintained and even increased my fitness regimen even when the fatigue was at its worst. I do 2 miles a day fast walking (4 - 4.5 mph)
Category: Uncategorised

Replies: 6

Last updated: 21 February 2020