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

Cessation of nilotinib in patients with CML who have kept deep molecular responses for 2yrs

Combining Asciminib with Ponatinib Suppresses Emergence Highly Resistant BCR-ABL1 Mutants

Long‐term follow‐up of lower dose dasatinib (50 mg daily) as frontline therapy in newly diagnosed chronic CML

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David Fitz on 12 October 2019

Category: Uncategorised

Replies: 10

Last updated: 1 November 2019

PinnedVideos of UK CML Patient Day now available
by Iyadede (Nov 1)

Thanks David for sharing. The videos are very informative

by David Fitz (Oct 22)

Thanks! I don’t think there are similar events in the US, at least not as coordinated. You could get in touch with Joannie and Jerry Clements at CML Busters in the US who are clued into US

by domonthebay (Oct 22)

Thanks for posting this content... I am in the US, not sure if there are events like this here (likely there are) but I am only 3 months into my journey with CML so still in heavy discovery mode...

by Mixail (Oct 19)

Thank you for posting. The videos where very informative.
Category: Uncategorised

Replies: 10

Last updated: 1 November 2019
Vikram on 12 November 2019

Category: Uncategorised

Replies: 2

Last updated: 13 November 2019

IMTINIB (GLEEVEC) and generic
by johnw1001 (Nov 13)

Hi All,
The most informative difference I have gleaned between the branded glivec and the generics which followed the expiry of patents held by Novartis is from the site of the CML Society of Canada

by AlastairC (Nov 12)

Vikram there is a leaflet here which explains about generics.
Simple answer is that Novartis developed imatinib and sold it as Glivec/Gleevec while it was still under patent. When the patents

by Vikram (Nov 12)

What deferant between IMATINIB (GLEEVEC) (NOVARTIS) AND GENERIC...???
IMATINIB WORK SUPERB... (MY EXPERIENCE)
GENERIC WORK????
IMATINIB BETTER THAN GENERIC???
GENERIC WORK ALSO GOOD??? Yes / no
Category: Uncategorised

Replies: 2

Last updated: 13 November 2019
Basil from RSA on 9 November 2019

Category: Uncategorised

Replies: 10

Last updated: 13 November 2019

News from Basil in South Africa
by Basil from RSA (Nov 13)

Thank you for you kind words. I try to use my good fortune to inspire and encourage all CML patients to achieve what was initially thought as unachievable.
Our special FB Group called

by chrissie (Nov 13)

Wow Basil. tremendous news. many, many congratulations. Your success gives us all hope for the future and is especially helpful and optimistic for "newbies".
Best
Chrissiex

by Basil from RSA (Nov 12)

Thank you very much.

by Vikram (Nov 12)

Congratulations basil
Category: Uncategorised

Replies: 10

Last updated: 13 November 2019
gbatalha on 11 November 2019

Category: Uncategorised

Replies: 5

Last updated: 13 November 2019

18 months result
by gbatalha (Nov 13)

https://ashpublications.org/hematology/article/2016/1/156/21036/Molecula...
Figure 1.
G

by Antibody Boy (Nov 13)

Interesting chart you mention regarding qPCR testing variation. Would like to know what the relative standard deviation (%RSD) was for those 146 measurements. Testing the same sample multiple

by gbatalha (Nov 13)

Thank you both.
I came across a chart from a medical study (2016) that tested the same sample 146 times and although the average was 0,11 % the values fluctuated from 0,05 % to 0,20%. Standard

by kat73 (Nov 11)

No statistical significance. Within the noise of the test. You're doing great!
Category: Uncategorised

Replies: 5

Last updated: 13 November 2019
Chuckster on 11 November 2019

Category: Blood tests

Replies: 2

Last updated: 12 November 2019

Latest Blood Test Results BCR/ABL1 .
by Chuckster (Nov 12)

Thanks David!

by David Fitz (Nov 12)

On the cusp of MMR - fab! Onwards and downwards 😃.
David.

by Chuckster (Nov 11)

Just got the results from Oct 31st. 2019
BCR/ABL1 : .1314 ( on 20 MG Daily of Sprycel) from .386 the end of August.
A decrease of .2546
BACKGROUND: Diag with CML Feb, 2018
Category: Blood tests

Replies: 2

Last updated: 12 November 2019
slindon2 on 9 November 2019

Category: Blood tests

Replies: 2

Last updated: 11 November 2019

BCR/ABL after 4 years
by slindon2 (Nov 11)

David
Thanks for your quick response. I am on 100mg Dasatinib. I take no other medication prescribed or over the counter. I havent had a cold or flu for about 6 years. The only thing i have

by David Fitz (Nov 10)

Hi Paul,
There are quite a few forum members who took many years to reach MMR, and many others too who have got close but never quite got there. I recall a seminar with a CML specialist and his view

by slindon2 (Nov 9)

Hi all
its been a while since i looked for some advice so here goes...
Im coming up for 4 years since diagnosis.
After 2 years on Imatinib I went resistant, I should have been changed to
Category: Blood tests

Replies: 2

Last updated: 11 November 2019
domonthebay on 11 November 2019

Category: Side effects

Replies: 1

Last updated: 11 November 2019

Update on side effects from Sprycel
by Mick E (Nov 11)

Do you know why they decided to start the dosage at 150mg twice daily? I’m currently on 300mg twice daily and from what I have read that 600mg daily appears to be a lower dose than

by domonthebay (Nov 11)

First, thanks for all the feedback from everyone. Side effects are: shortness of breath, heart palpitations (minor) itching (major) and chest pains (worse at first then fading to almost never
Category: Side effects

Replies: 1

Last updated: 11 November 2019
Mick E on 10 November 2019

Category: Uncategorised

Replies: 2

Last updated: 11 November 2019

Lung problems
by Mick E (Nov 11)

Dasatinib had the same effect on me. When I first started at 100mg I was having serious problems even resting. The dosage was subsequently lowered to 50 then 25mg but the problem

by domonthebay (Nov 11)

I am sorry you are going through this side effect. I hope it gets better and eventually ends altogether. Its a terrible feeling. I have very minor but noticeable shortness of

by Mick E (Nov 10)

Have any of you developed lung problems or had lung conditions exacerbated whilst taking Imatinib or Nilonotib?
i have started to have a worsening problem with a dramatic drop in exercise tolerance
Category: Uncategorised

Replies: 2

Last updated: 11 November 2019
S Davis on 27 October 2019

Category: Side effects

Replies: 7

Last updated: 11 November 2019

Looking for treatment options for bumpy red rash from Dasatimib
by domonthebay (Nov 11)

one temporary relief I recently found to itching skin/rash from Dasatinib is Dr. Bronner Pure Castile Peppermint Soap - I am not sure if you can get it everywhere but likely on the web... (see

by S Davis (Nov 10)

The dose of Dasatinib I am on is 80 mg. The bumpy rash is persisting, but not worsening and is otherwise not symptomatic. Keeping skin well moisturized seems to help. Remarkably,

by Rosiem (Nov 9)

Since my dose of Dasatinib was increased to 70 mg, I have an itchy, scaly rash in both eyes and around the left eye. I moisturise the ears with tea tree cream twice a day and that seems to control

by S Davis (Nov 6)

Thank you for sharing your experience. After two weeks, the widespread bumpy, red rash seems to be dissipating a bit. It is not itchy or burning. I too think just keeping my skin
Category: Side effects

Replies: 7

Last updated: 11 November 2019
David Fitz on 5 November 2019

Category: Getting help

Replies: 10

Last updated: 10 November 2019

CML Management App: Please take 5 minutes to complete this survey - it would really help
by Olivia (Nov 10)

Done.
I think I would have found it more useful soon after diagnosis, but 10+ years on things seem to be going smoothly and I don't worry much about it all.
Olivia

by alexmcpee (Nov 8)

Cool. I’ve taken the Survey.
If interested I’ve been developing apps since 2011 (currently work for a FTSE 100 as an iOS dev) so if you need some consultation for free hit me up at

by Mick E (Nov 8)

Done 😁

by David Fitz (Nov 8)

It didn't sond arrogant at all, and thanks for taking the survey.
David.
Category: Getting help

Replies: 10

Last updated: 10 November 2019
mamodei on 29 October 2019

Category: Side effects

Replies: 9

Last updated: 9 November 2019

Retaining/regaining fitness on dasatinib
by Rosiem (Nov 9)

Keep up the good work! I've had to accept that I may never get back to the level of fitness I had before being diagnosed. Before I was diagnosed I suffered all the problems associated with low

by Mick E (Nov 6)

If you plan to run it’s important to keep the legs strong enough for the activity. Walking does very little to maintain the strength needed. Simple things like full range squats,

by mamodei (Nov 5)

This has all been very useful. For now I think I'll just walk the distance until some other problems are sorted out. I'm going to get a heart rate monitor watch so when I start

by Mick E (Nov 5)

Pleased to hear you can still get some miles in!! 😁
Category: Side effects

Replies: 9

Last updated: 9 November 2019
koralia.pappi on 3 November 2019

Category: Side effects

Replies: 4

Last updated: 9 November 2019

Nilotinib and heart palpitations
by cmljax (Nov 9)

Could be all caused by stress/anxiety, but I am pretty sure that my recurrence was not. I think for me the palpitations are caused by the TKI and perhaps exacerbated stress.

by alexmcpee (Nov 8)

Hi Koralia,
I have been on Nilotinib for 19 months after 3 months on treatment and I had palpitations that lasted for around another 3 months. The diagnosis affected me really hard mentally and

by koralia.pappi (Nov 5)

Hi cmljax,
Thanks for the reply, and for sharing your experience.
I think my discomfort is changing everyday so it's not really persistent, and I think it is probably combined with some

by cmljax (Nov 5)

Koralia:
I started experiencing palpitations a month or so after I first started nilotinib 3 years ago at 300 mg 2x/day. They were pretty bad, some days lasting all day, other days only
Category: Side effects

Replies: 4

Last updated: 9 November 2019
chrissie on 27 February 2018

Category: Side effects

Replies: 14

Last updated: 9 November 2019

Higher creatine level (kidneys)
by chrissie (Nov 9)

Hi Richard
Thank you for your thought. No problem with kidneys now - and I can't remember what the outcome was back in 2018- so I guess all was OK
Funnily enough I had my latest results back

by Richd478 (Nov 9)

Hi,
I wanted to follow up with you to see if your doctor ever found out the cause of the elevation. Currently I’ve been on Gleevec for 8 years with no issues and full MMR remission. However,

by chrissie (Mar 3)

Thanks for your reply Isla .I printed off the article for my GP .David also gave me the link. Thanks also for your reassurance,
Hope you are doing well
Best
Chrissie

by Isla D (Mar 2)

Hi Chrissie
My creatinine levels have increased and my eGFR levels have decreased since starting dasatinib so I've done a fair bit of panicking and research on TKIs and kidney health myself.
In 2016
Category: Side effects

Replies: 14

Last updated: 9 November 2019
vholly on 25 October 2019

Category: Blood tests

Replies: 3

Last updated: 9 November 2019

Rising BCR-ABL
by Amackerness (Nov 9)

The same thing has happened to me gone up to 0.026 from 0.009. First increase and being 're tested next month I have felt so much better and I really don't want to change medication.

by vholly (Oct 30)

Thank you kat73 - great to have reassurance from you. Much appreciated!
victoria.

by kat73 (Oct 25)

Absolutely of no concern whatsoever. Completely statistically insignificant. Well within lab error range, sample error range. As Scuba likes to call it, the "noise" of

by vholly (Oct 25)

Hi all,
apologies for repeating a common thread but I can’t find info that contains similar numbers to mine so I want to put a question out there.
I’m just over 2 year since diagnosis -
Category: Blood tests

Replies: 3

Last updated: 9 November 2019
vonnie on 8 November 2019

Category: Uncategorised

Replies: 2

Last updated: 8 November 2019

Diarrhoea
by vonnie (Nov 8)

thanks Alex very much for your reply
Vonnie

by alexmcpee (Nov 8)

Hi there.
Ive been on treatment for 19months and get bouts of the above and constipation from time to time. I’ve recently been having probiotics as recommended by someone else and my “

by vonnie (Nov 8)

Hello everybody have not been on line for quite a while but i would love some advice if at all possible,i experiencd a sudden bout of the above during the night and i am trying to find a cause for
Category: Uncategorised

Replies: 2

Last updated: 8 November 2019
scuba on 8 November 2019

Category: Uncategorised

Replies: 0

Last updated: 8 November 2019

2019 ASH Conference Abstracts
by scuba (Nov 8)

https://ash.confex.com/ash/2019/webprogram/start.html
Category: Uncategorised

Replies: 0

Last updated: 8 November 2019
devenavani on 7 November 2019

Category: Treating CML

Replies: 0

Last updated: 7 November 2019

THC/CBD interaction with Tasigna
by devenavani (Nov 7)

Hello does anybody know if there are any negative interactions with THC/CBD aka cannabis and Tasigna ?
Its widely used by caner patients to help manage nausea /anxiety/ pain etc etc.
i
Category: Treating CML

Replies: 0

Last updated: 7 November 2019
TJ.B on 20 October 2019

Category: Uncategorised

Replies: 13

Last updated: 7 November 2019

Nilotinib user suffering with anxiety
by devenavani (Nov 7)

does anybody know if cannabis would be appropriate to take to help with the nausia anxiety and boan pain associated with tasigna ?

by mamodei (Oct 27)

I've a long history of gut problems and the dasatinib has been okay. A bit of nausea, but low level and can be ignored.
Nilotinib was much more of a problem for my digestion. I

by Mick E (Oct 27)

Yep! 5 days in (600mg daily) and I can already feel it! 🤷‍♂️🙄

by kat73 (Oct 27)

Never had any stomach problems with dasatinib. Had nausea with imatinib, even when taken with food (or an hour after food - no difference). Nausea would come at random times - while driving on
Category: Uncategorised

Replies: 13

Last updated: 7 November 2019
OggabetF on 7 November 2019

Category: Uncategorised

Replies: 2

Last updated: 7 November 2019

Interesting case of CML...
by scuba (Nov 7)

https://ascopost.com/issues/november-25-2015/does-low-dose-radiation-cau...
"Our conclusions? First, it is more likely than not that low doses of ionizing radiation increase the risk of

by David Fitz (Nov 7)

Radiation exposure is just one risk factor with CML. It's the only one that's definitively known, but it's is certainly not the only one that exists.
BCR-Abl, the driver of CML, can be

by OggabetF (Nov 7)

The other day on lunch break I was doing research on CML and I came across this case of a Jaguar who developed CML while in captivity at a zoo in Texas. The veterinarian comments that this is
Category: Uncategorised

Replies: 2

Last updated: 7 November 2019
JohnFromChicago on 6 November 2019

Category: Uncategorised

Replies: 1

Last updated: 6 November 2019

New Basophils (1% and absolute value of .1) but with decreasing PCR 0.008
by scuba (Nov 6)

I suspect nothing to worry about at all. The fact your PCR is below precision limit of the test (i.e. PCR < 0.01%) suggests your CML is no longer an issue. Basophills rise and fall as the body

by JohnFromChicago (Nov 6)

I recently had my lowest PCR yet 0.008 and on just 50mg which I was very very happy about. However my oncologist contacted me today wants me to return in a three weeks for another CBC and a
Category: Uncategorised

Replies: 1

Last updated: 6 November 2019