Taming the gatekeeper: ponatinib dose holds the key

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sandy craine on 1 October 2021

Category: Other conditions

Replies: 8

Last updated: 1 December 2021

PinnedOver 200 Scientists & Doctors Call For Increased Vitamin D Use To Combat COVID-19
by scuba (Dec 1)

Ample Magnesium Is A Must For Healthy Vitamin D Levels

https://www.mindbodygreen.com/articles/ample-magnesium-is-must-for-healt...

One of the many hats magnesium wears throughout the body is that

by scuba (Nov 21)

Another outstanding video from Dr. John Campbell regarding vitamin D & Covid

https://www.youtube.com/watch?v=fbGug3rczx4

Dr. John Campbell
COVID-19 Mortality Risk Correlates Inversely with

by sandy craine (Nov 5)

How can you know that you are getting enough of both vitamins D and K? Here is a quick summary on the topic, along with additional information and details about vitamins D and K.
Vitamins D and K

by scuba (Oct 21)

Click on the link for an excellent summary on role of D3 and K2 in the body and how they work together. Both should be taken per day for maximum health benefit.
By adding K2 to your D3 protocol,
Category: Other conditions

Replies: 8

Last updated: 1 December 2021
rebeccacrosby on 4 December 2021

Category: Treating CML

Replies: 2

Last updated: 6 December 2021

New Diagnosis/tasigna ?
by rebeccacrosby (Dec 6)

Hi John,
Thank you for your response. The pain from the enlarged spleen did last awhile but was gone after a week on Tasigna. This pain feels like it is something different from the spleen, but it

by johnw1001 (Dec 5)

Hi,
With a very high WBC it would not be unusual for your spleen to be enlarged and for the spleen to impose on to the stomach and create pain and discomfort as well as indigestion-I understand that

by rebeccacrosby (Dec 4)

Hello all,
I was just diagnosed on Oct 30th, had a WBC 425,000 and very enlarged spleen. I am a 45 year old female with a fairly healthy lifestyle. I started Tasigna on Nov 16th and developed both a
Category: Treating CML

Replies: 2

Last updated: 6 December 2021
Alan Locke on 4 December 2021

Category: Uncategorised

Replies: 1

Last updated: 6 December 2021

To eat or not to eat?
by PhilipDavid (Dec 6)

Hi. I have been on imatinib for 6 years now. My PCR is. 0.007. The most important thing is to take the medication with food - mainly carbohydrates- rice , bread , potatoes - stops

by Alan Locke (Dec 4)

Hi everyone
I have a brother-in-law who is a keen pickler! He has given us for Christmas 5 jars of piccalilli, onions and various chutneys.
Can I eat them in moderation or not at all?
I
Category: Uncategorised

Replies: 1

Last updated: 6 December 2021
JPD on 23 November 2021

Category: Uncategorised

Replies: 2

Last updated: 5 December 2021

First undetected after 8 years AND dose reduction...
by kat73 (Dec 5)

May be a blip, but it also could be the beginning of a trend. Anecdotally, many people experience a major downward improvement in their PCR after a drug break and return, especially at a lower

by scuba (Nov 24)

I like turtles.

by JPD (Nov 23)

I know its 99% a blip, but it was a pleasant surprise. First test post dose reduction (Tasigna 400mg to 300mg). Only thing Ive been doing different is trying to get on the SCUBA Vitamin D
Category: Uncategorised

Replies: 2

Last updated: 5 December 2021
mariatot on 2 December 2021

Category: Drug-drug interactions

Replies: 3

Last updated: 3 December 2021

Nilotinib plus Peginterferon Alfa 2a and use of Milk Thistle and Globe Artichoke
by mariatot (Dec 3)

Hi Sandy,
Forgot to tell you that when my mum was initially started on Imatinib, she had previously been prescribed hydrea (chemo drug) 1 x 500 mg in 2018 whilst the hematologist ran other tests, as

by mariatot (Dec 3)

Hi Sandy,
Thanks for our response and valuable feed back.
Long story.....She initially started on Imatinib - max dose and it drastically depleted her platelets and white blood cells causing her

by sandy craine (Dec 2)

Hi Maria,
It sounds like you have done some good research. PegIFN does have similar side effects to IFN and that drug on its own failed to control CML for the majority of patients, the side effects

by mariatot (Dec 2)

Hi Sandy and Members of CML Support Group,
I recently read a thread by Sandy commenting on the use of milk thistle supplements whilst taking TKIs saying that she believed there weren't any
Category: Drug-drug interactions

Replies: 3

Last updated: 3 December 2021
Ontasigna on 3 December 2021

Category: Treating CML

Replies: 0

Last updated: 3 December 2021

Tasigna : dosage gap 11.30 hrs
by Ontasigna (Dec 3)

Hi all,
I have taken my tasigna dose at a time gap of 11.30 hrs as supposed to 12 hrs gap.
I am feeling very tired and joint and muscle pain.
Is it bcoz of dose??
I am on 400mg bd
Kindly share your
Category: Treating CML

Replies: 0

Last updated: 3 December 2021
David Fitz on 21 March 2014

Category: Uncategorised

Replies: 18

Last updated: 3 December 2021

GORD / GERD / Reflux and Nissen Fundoplication
by Nimbus2 (Dec 3)

Hello David. I cannot thank you enough for this posting and the care you have taken with writing it.
My situation is very similar except that I am 65 years old. My dentist has noted substantial

by David Fitz (Dec 2)

For me the surgical intervention was self led. I am a big believer in patient-led care! It also helped that I had insurance which meant it was easy tog et to see a gastroenterologist.
The

by Nimbus2 (Nov 30)

It is an old thread but very helpful in that it is so close to my own circumstances. I take dasatinib 100 mg at present, I am just within MMR after three years.
My heartburn a couple of weak

by sandy craine (Mar 25)

Hi David, thanks for updating us on your great results with what seemed like at the time, quite an invasive procedure. It is great that you found an answer to what must have been quite distressing
Category: Uncategorised

Replies: 18

Last updated: 3 December 2021
sandy craine on 2 December 2021

Category: Other conditions

Replies: 0

Last updated: 2 December 2021

COVID Antibody Treatment Sotrovimab Approved for Use
by sandy craine (Dec 2)

UK authorisation has been given for sotrovimab for patients with mild to moderate COVID-19 who are at risk of developing severe disease.
The Medicines and Healthcare products Regulatory Agency (MHRA
Category: Other conditions

Replies: 0

Last updated: 2 December 2021
Rae_B on 30 November 2021

Category: Side effects

Replies: 5

Last updated: 1 December 2021

Imatinib and depression/mental health
by Polineczka (Dec 1)

Hello, I felt very badly mentally on Imatinib, after changing to Tasigne it is much better. At the beginning of the treatment, I was under the care of a psychologist, and from the moment of changing

by Rae_B (Dec 1)

Kat - thank you so much.
Sometimes it feels like I'm going crazy so its reassuring to know someone else has had the experience. I really appreciate you sharing this.
I think I

by kat73 (Nov 30)

Yes, yes, yes, I had depression on imatinib and felt physically awful the whole time - two years! I switched to dasatinib and all that disappeared virtually overnight. While on imatinib, they

by Rae_B (Nov 30)

Thank you Alan, that sounds like something I want to look at. I appreciate you sharing your thoughts.
I've also booked to talk to my consultant. Hopefully the side effects will diminish a
Category: Side effects

Replies: 5

Last updated: 1 December 2021
Vikram on 30 November 2021

Category: Food & fitness

Replies: 1

Last updated: 1 December 2021

DIP DIET AND CML
by thomas.c (Dec 1)

Hi Vikram,
That depends on your expectations. Any healthy diet is helpful. Maintaining a healthy weight and eating nutritious food is a good idea in general. Will it cure your CML? It won’t.

by Vikram (Nov 30)

DIP DIET AND CML
DIP DIET HELPFULL IN CML??
ANY PERSON THIS FORUM TRY DIP DIET ??
IF YES..
PLEASE SHARE
YOUR EXPERIENCE...
PLEASE REPLY 🙏
Category: Food & fitness

Replies: 1

Last updated: 1 December 2021
alexmcpee on 23 November 2021

Category: Uncategorised

Replies: 10

Last updated: 30 November 2021

3.5 year PCR result
by Nimbus2 (Nov 30)

That's very interesting. I have a few weeks to wait until my next result. It is a lesson not to get too excited about one off measurement either way.

by ColoradoGuy (Nov 30)

Funny, I too had a 0.015% outlier in between 0.043% and 0.045% (my latest).

by Nimbus2 (Nov 30)

Well done! I have also been a slow responder with a bumpy ride towards MMR. I had a 0.015% which was an "outlier" (too good to be true) but my subsequent 0.064% is more representative of

by ColoradoGuy (Nov 29)

Congrats and thanks for sharing. As you know I am also at 0.045% and 51 months in. I have been MMR for about a year and a half and am still hopeful for steady movement downward. I
Category: Uncategorised

Replies: 10

Last updated: 30 November 2021
EvaH on 18 August 2021

Category: Children & young people

Replies: 17

Last updated: 30 November 2021

Here goes - first bcr/abl after dose reduction
by Vikram (Nov 30)

Hii
TFR
HOW LONG TIME POSSIBLE in TFR ( ANY DATA)
ANY ONE PERSON live with long term TFR and continue...?
(sorry for bad english)

by AlastairC (Nov 28)

Destiny data showed that chances of successful TFR were better if undetectable was maintained at half dose, in the case of that trial over 12 months. If there was a slow drift upwards, TFR was less

by Buzzm1 (Nov 28)

EvaH, you can just take Imatinib 200mg every other day.

by EvaH (Nov 28)

I am still being given 400mg tablets so it's hard to make them into 100mg
Category: Children & young people

Replies: 17

Last updated: 30 November 2021
Deni H on 12 November 2021

Category: Side effects

Replies: 2

Last updated: 30 November 2021

Tiredness and Imatinib
by Rae_B (Nov 30)

Hi Deni
I was diagnosed on Dec last year too.
I think your experience mirrors mine. Some days I'm perfectly OK - I can crack on with my day. Then, I'll go through a few days

by AlastairC (Nov 14)

Hi Deni
I think in time this will reduce but not go away completely. I have been on imatinib at various levels since 2007. For the first 11 years I was on 400mg, and had what I described to my wife

by Deni H (Nov 12)

Good Afternoon all
I hope this finds you safe and as well as can be expected.
Just some advice please. I was diagnosed in December 2020 and at my last hospital appointment my wonderful consultant
Category: Side effects

Replies: 2

Last updated: 30 November 2021
logisnews on 19 January 2019

Category: Side effects

Replies: 37

Last updated: 29 November 2021

Chylous Ascites as a TKI side-effect? Specifically Sprycel?
by Michelle3 (Nov 29)

That’s incredible. Prior to taking the anti virals I was needing a drain every 2 weeks where they would remove c.7L (I was always left with about 3L as it just wouldn’t come out) but I

by logisnews (Nov 29)

Yes, immediately prior to the procedure they took it all out or as much as possible. I have not had one since -- i got an ultrasound a month later and none was needed. I may have some

by Michelle3 (Nov 29)

Thanks Jim - were you drained before the 4th procedure? When I started to take the anti virals I probably had about 7L and I’d say I’ve still got roughly 3L but it just doesn’t

by logisnews (Nov 28)

That's interesting about the shingles angle.
In my case, my chylous ascites was fixed by a surgical intervention of sorts -- a (very careful) injection/embolization(?) of "glue" into
Category: Side effects

Replies: 37

Last updated: 29 November 2021
sorin real on 26 November 2021

Category: Food & fitness

Replies: 4

Last updated: 27 November 2021

BCR-ABL1 and the workout
by sorin real (Nov 27)

Thank you all , good to hear that !

by snowman 35 (Nov 27)

Hi

I do crossfit from the first day of my diagnosis since 5.5 years.I lify heavy weights and I do workouts that my heart beat reaches 190+ beats per minute. I am unditected 4.5 years now!

by thomas.c (Nov 27)

Hi. I haven’t exactly notice a direct connection between exercise frequency and bcr-abl levels, however dasatinib gave me (or at least likely contributed to) rhabdomyolysis after some intense

by PhilipDavid (Nov 27)

Hi. I do quite a lot of exercise- gym 3 to 5 times a week. I am lifting some heavy weights - 135 kg dead lift . I was diagnosed some 6 years ago. My PCR is. 0.007. I found
Category: Food & fitness

Replies: 4

Last updated: 27 November 2021
Agile on 27 November 2021

Category: Other conditions

Replies: 1

Last updated: 27 November 2021

CML and Dental Issue
by thomas.c (Nov 27)

Dear Amit,

I had multiple wisdom teeth extractions, they were all in bad shape, and a piece of my jaw bone had to come with them. It wasn’t fun, but CML didn’t interfere with

by Agile (Nov 27)

Greetings from India everyone!
My wife was diagnosed with CML almost a year ago.
The Imatinib/Glivec has worked wonders. However recently she had a bit of tooth ache in one of her tooth. That tooth
Category: Other conditions

Replies: 1

Last updated: 27 November 2021
sandy craine on 24 February 2021

Category: About CML

Replies: 5

Last updated: 26 November 2021

Original imatinib/Glivec packaging?
by Julia.K (Nov 26)

Hi, could anyone tell me pls if the branded Glivec is still available in the UK in special cases? If generic Imatinib does not work and you cannot take any second line TKIs (and asciminib as well)

by sandy craine (Mar 4)

Thanks John,
I have all those links and have forwarded them to the curator of the exhibition. Of course this will be about cancer rather than stand alone CML. That may happen at some future date,

by johnw1001 (Mar 3)

Hi Sandy,
We have been in contact.
I still have packaging for Glivec from 2007 when first dx plus a lot of other historical things like records of bloods on that dreadful day when given the bad news

by sandy craine (Mar 2)

Hi Buzz,
Thanks so much for trying that. I have contacted a couple of clinicians here in the UK as well as Brian Druker so I am hoping that will be fruitful. I am now regretting that I did not save
Category: About CML

Replies: 5

Last updated: 26 November 2021
Alan Locke on 23 November 2021

Category: Uncategorised

Replies: 5

Last updated: 25 November 2021

Saying hello
by sandy craine (Nov 25)

Interesting Youtube vid from Dr.John Cambell here re data from 3rd vaccine/booster.

by Richard42 (Nov 25)

As for paracetamol, I can’t see any harm in taking it. There are views pro and con as far as both paracetamol (metabolised in the liver, like imatinib certainly) and ibuprofen (a bit harsh on

by Richard42 (Nov 25)

I’ve had my booster and it was fine. All my doses were Pfizer and the only side effect I had was a sore arm.
Given your recent diagnosis I would definitely discuss it with your

by Alan Locke (Nov 24)

Thank you Sandy.
Hopefully, my second hospital appointment is just before my booster. I will ask about D3 levels.
I am finding the support site very helpful in understanding Cml. As a humble
Category: Uncategorised

Replies: 5

Last updated: 25 November 2021
izhamredza on 14 August 2020

Category: Drug-drug interactions

Replies: 5

Last updated: 23 November 2021

Taking minoxodil and finasteride for hair loss
by NV6 (Nov 23)

Hey ,
quick question... are u taking the finasteride now ? What did ur doctor say ? Is it ok to take finasteride ?

by NV6 (Nov 23)

Hey ,
quick question... are u taking the finasteride now ? What did ur doctor say ?

by Lucas (Aug 21)

sorry for the late response, but not much. if the cause is the TKI, minoxidil doesn't help that much, but you could try for a couple of months. good luck!

by izhamredza (Aug 15)

Thank you for the response. I will talk to my doctor soon. Sorry for asking, have you done any treatment or solution to overcome hairloss and grow the hair back?
Category: Drug-drug interactions

Replies: 5

Last updated: 23 November 2021
Karthikeyan on 18 November 2021

Category: Uncategorised

Replies: 6

Last updated: 23 November 2021

About generics in UK
by Sunny (Nov 23)

I absolutely agree with you Alastair, my thoughts precisely.
Thank You Richard.
pigeon.

by AlastairC (Nov 23)

And that folks is why Richard who understands patents is so valuable to the forum.
Thanks Richard
Alastair

by Richard42 (Nov 22)

The position is a bit complicated. There are no less than 5 marketing authorisations for generic dasatinib in the UK, three of which include CML as an indication (Teva, Tiefenbacher and

by Nimbus2 (Nov 21)

Dasatinib is available as a generic in the UK and a number of CML patients have received it in error. It is presently approved for ALL but not CML.
See https://bnf.nice.org.uk/medicinal-forms/
Category: Uncategorised

Replies: 6

Last updated: 23 November 2021