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Kat82 on 15 May 2025

Category: Organising your life

Replies: 2

Last updated: 15 May 2025

Just diagnosed
by Kat82 (May 15)

Thank you so much for your helpful reply, James. Wonderful to hear that you’re doing so well on Dasatinib. There is a lot to be grateful for with these amazing TKIs. I clearly remember learning

by JS001 (May 15)

Hi Kat,
Welcome to the Forum!
I was diagnosed with CML at a similar age to yourself 10 years ago. My spleen was also enlarged, this is how I ended up being diagnosed, since this was causing

by Kat82 (May 15)

Hi All,
I’m so pleased to have found this forum which looks to be an amazing source of information and support.
As the title says, I am newly diagnosed - just yesterday. It has only been a week
Category: Organising your life

Replies: 2

Last updated: 15 May 2025
sandy craine on 27 February 2018

Category: Side effects

Replies: 2

Last updated: 15 May 2025

Magnesium supplementation
by snowman 35 (May 15)

Hi Scuba!Today I bought magnisium citrate.I have ibs.Do you know if this form of magnisium can affect my ibs?

by scuba (Feb 27)

Adding to this thread on Magnesium. There are several different forms of Magnesium and are absorbed differently by the body.
Below is a link describing each one and what form is best to take

by sandy craine (Feb 27)

There is some discussion and a link (provided by scuba) on another thread about magnesium supplementation and how it can counter some side effects of TKi therapies. I thought I would start a
Category: Side effects

Replies: 2

Last updated: 15 May 2025
Mick E on 2 February 2022

Category: Treating CML

Replies: 13

Last updated: 15 May 2025

Low dose Nilotonib
by Sav_5 (May 15)

You are welcome Gian! I cross my fingers for you and hope to read soon good news and keep enjoying a small glass of wine!! Keep us informed! Thank you.

by Gian P (May 12)

Thank you for your feedback and great job! I will do my testing tomorrow, cross. your fingers fingers everything is good! Thank you again for sharing.

by Sav_5 (Apr 29)

When I have my three month BCR-ABL test, I check also the liver index (GGT, ALT, AST). As my results are in normal range I drink occasionally wine or beer like you a glass or two. As for training is

by Gian P (Apr 28)

Thank you for the answer and for sharing, do you know if you are allowed to drink ( mostly wine ) while on TAsigna? im not a drinker per se, but I occasionally enjoy glass of wine or two. and is
Category: Treating CML

Replies: 13

Last updated: 15 May 2025
Misbah on 15 May 2025

Category: Blood tests

Replies: 1

Last updated: 15 May 2025

Coming off Dasatinib
by JS001 (May 15)

Hi Misbah,
Like yourself, I am currently on Dasatinib and had to stop taking it for 10 days last year due to being admitted to Hospital with Sepsis. Unfortunately I lost Deep Molecular Remission (

by Misbah (May 15)

Hi all
I was diagnosed with CML in November 2021 when I was 27, since then I have been on Dasatanib and now since September 2024 I have been in a deep remission. Up until 4 weeks ago I was
Category: Blood tests

Replies: 1

Last updated: 15 May 2025
Kamil on 18 May 2022

Category: Food & fitness

Replies: 7

Last updated: 15 May 2025

Vitamin D and other supplements
by Giaseven (May 15)

I see it's been a while since you’ve posted, but I just want to ask if anyone's had their vitamin D levels tested after being on TKIs for a while. I’ve heard that they can drop pretty low without

by Felix (May 21)

Hi, try Nutravita for all your vitamins in the UK ,they do a good Curcumin.They are an amazing company to deal with ,great prices ,and occasional freebies .Open an account on their main site

by scuba (May 20)

Yes - Arms shoulders legs can do it, but back is best. And amount of time. Lying flat in the sun at the beach at noon in summer for about 20 minutes can provide plenty of vitamin D.

https://www.

by Kamil (May 20)

I have found this product which is 1000mg, the ingredients and values seems to be okay. Could you confirm if this is a good c3 product, its hard to find sabinsa c3 complex here in the UK,but this
Category: Food & fitness

Replies: 7

Last updated: 15 May 2025
scuba on 14 May 2025

Category: Uncategorised

Replies: 4

Last updated: 14 May 2025

TFR report May 2025
by scuba (May 14)

I have come to believe that everyone "creates" bcr-abl as they age. And that the only reason some people progress to disease and others do not is because of natural immune surveillance and other

by AlastairC (May 14)

Thanks Scuba. A much larger study would be nice, but this is a LOT better than nothing.

by scuba (May 14)

Biernaux et al. Study: In a study conducted by Biernaux and colleagues, 117 healthy subjects were tested, and 23 were positive for the BCR-ABL mRNA, indicating a prevalence of approximately 20%. The

by AlastairC (May 14)

Hi Scuba
Glad to hear you are back to undetected. I'd love to see the results of BCRABL testing on a large number of the general population. I think it is likely that a few people would have very
Category: Uncategorised

Replies: 4

Last updated: 14 May 2025
David Fitz on 30 April 2019

Category: Uncategorised

Replies: 30

Last updated: 14 May 2025

Dasatinib dose reduction not going quite to plan
by scuba (May 14)

This will sound 'counter-intuitive', but you might consider lowering your sprycel dose to 40 mg. Sprycel can actually work better on a lower dose.

Sprycel targets other kinases which suppress

by Tiger (May 14)

Hi Scuba,

I just had my PCR Test and you were correct it went down from .24 to .12 on 80 mg of Sprycel. I am still in my 1st Year. 6 months on Sprycel and I am hoping it will continue to drop

by Tiger (May 14)

80 mg Sprycel

by scuba (Apr 29)

What dose sprycel are you taking?
The range of values, 0.12,0.17, & 0.24 are within the precision of the PCR test. You are in your first year of treatment where a lot of bone marrow remodeling
Category: Uncategorised

Replies: 30

Last updated: 14 May 2025
bdmemphis on 4 January 2025

Category: Side effects

Replies: 14

Last updated: 13 May 2025

Anyone else experience cognitive/memory issues while on TKIs?
by Gian P (May 13)

Hi everyone, yes, it seems every TKI drug have fatigue in common, however, im glad that you mentioned memory loss, because I never knew that could be a side effect, me too have a bit of strange

by Bill Yellowley (Mar 9)

Hi

This is my first visit to this excellent forum for a very long time. When I logged on I was amazed to see it was 17years and 5 hours ago that I first joined .
I suffered memory problems

by Neebs71 (Mar 5)

Winnie. I moved to Dasatinib 10 months ago after 8 months on Imatinib (lack of response) and have experienced similar symptoms you’ve described.

I find it difficult to recall names and my

by suvankardas (Feb 9)

I have been on Imatiniv 400 for about 2 years. After few months of detection my mother doctor referred me to a psychiatrist who put me on Mitrazapine. I definitely was under affect of some mental
Category: Side effects

Replies: 14

Last updated: 13 May 2025
Evie on 27 March 2025

Category: Uncategorised

Replies: 2

Last updated: 12 May 2025

Supplements
by Gian P (May 12)

Gleevec was my first TK drug I took and had to stop because would lower my platelet count to a level that was unsafe, now I am taking Tasigna 300 mg and probiotic every morning, I had some issues

by joey (Apr 21)

Hi Evie
i am not taking any supplements but am adjusting my diet after some initial kidney issues were flagged after 12 months on Imatinib. not sure how much difference it will make as its the

by Evie (Mar 27)

Hi I’m currently on 300mg imatinib and was wondering if anyone takes probiotics or any type of supplements to support liver and kidneys.
Category: Uncategorised

Replies: 2

Last updated: 12 May 2025
johnw1001 on 25 April 2025

Category: Uncategorised

Replies: 3

Last updated: 11 May 2025

Covid vaccination Spring 2025
by JoeP (May 11)

Thanks for the heads up.

Here in the states there is no talk at all of the new Covid shot.

I’m wondering if it will either be ignored altogether or denied to us by law…
Good for you

by Christine R (May 11)

I had a call from my GP Surgery for mine and booked it but as i needed to change it and it is a pain doing that with my GP's system i cancelled it there and re booked at a local pharmacy. No

by David Fitz (May 11)

Hi John,
I got a text message saying it was time for mine, and like you it was at a pharmacy but I had to book - no walk in available near me. But may as well have made no difference as there were

by johnw1001 (Apr 25)

Hi All in UK,
I have just had another shot of the Covid vaccination-this time it was Moderna .I suffered just a sore arm but otherwise I had no other side effects.
Those who qualify are over 75s and
Category: Uncategorised

Replies: 3

Last updated: 11 May 2025
David Fitz on 14 March 2025

Category: Uncategorised

Replies: 3

Last updated: 11 May 2025

London Haematology Patients & Carers Congress - 9th May 2025
by David Fitz (May 11)

Hi Wendy! I’m glad you found it was a worthwhile day. When planning, we were worried that we didn’t have enough material to fill the two hours, but in the end we could have done with three! We are

by WENDY HEARN (May 11)

Just to say thank you David for your input into the CML afternoon at the HPCC25. The two hours went much too quickly. Your role play session with Dr Hannah was very useful and entertaining.

by Christine R (Mar 17)

Deleted

by David Fitz (Mar 14)

Please join us in London for the annual Haematology Patients and Carers Congress. There will be a special CML session at 14:30 on the 9th of May in Westminster, London chaired by myself and Dr Guy
Category: Uncategorised

Replies: 3

Last updated: 11 May 2025
Tiger on 7 May 2025

Category: Treating CML

Replies: 0

Last updated: 7 May 2025

BCR Testing
by Tiger (May 7)

Thank You Scuba,

I am on 80 mg of Sprycel! I am also taking Vitamin D, Zinc, and Vitamin C and Curcumin. Is there any I am missing. The doctor has ordered a mutation study for me. I am waiting
Category: Treating CML

Replies: 0

Last updated: 7 May 2025
Dupont on 29 April 2024

Category: Uncategorised

Replies: 2

Last updated: 28 April 2025

Tasigna/Nilotinib to Sprycel/Dasatinib switch ?
by Gian P (Apr 28)

I was on Sprycel for two years and the problem was pleural effusion, to me was unnoticed until I did a abdominal Xray for something totally different, and noticed the fluid in the right lung (1.5

by sue. R (May 1)

I switched from Spyrcel to Nilotinib as the Spyrcel was causing pleural infusion. In between I was taking Bosutinib for a year but I too had an upward trend.

A month now on 400 morning and

by Dupont (Apr 29)

Hello,
I was diagnosed with CML in May 2022 and on tasigna/nilotinib ever since. Lately, my PCR results have been stagnating with a slight upwards trend (0.22 in July 23, 0.25 in November 23 and 0.
Category: Uncategorised

Replies: 2

Last updated: 28 April 2025
cgovind on 17 April 2025

Category: Side effects

Replies: 3

Last updated: 28 April 2025

High magnesium, low D3 and TKI
by cgovind (Apr 28)

Thank you! The Mg levels are slowly inching up with every subsequent test, so i guess that rules out lab error.
Yeah, I have been getting feedback (mostly in this forum) that 70mg is high and have

by Felix (Apr 19)

70 mg for a young boy is a hell of a lot and for a long time ,no way would I take that much as an adult .You really need to get that reduced it’s too toxic .His bloods must be low enough by now

by PhilipDavid (Apr 19)

Hi. I was diagnosed with cml in 2015 had similar issues check this out
You’re right to be paying attention to this—your observations are sharp. Typically, low vitamin D3 and low magnesium often

by cgovind (Apr 17)

My son (12 yo) has been on Dasatinib 70mg for the last year, after having switched over from Imatinib. His Vit D3 levels has been persistently low, which we address through monthly dose of 60k
Category: Side effects

Replies: 3

Last updated: 28 April 2025
Justine on 15 March 2025

Category: Treating CML

Replies: 8

Last updated: 25 April 2025

TFR population data
by JoeP (Apr 25)

On my report I have readings for the following in my most recent lab:

e13a2 (b2a2) transcript = 0.0651

e14a2 (b3a2) transcript <0.0032

e1a2 transcript <0.0032
To be honest I

by Vikram (Apr 25)

How will we know?
e13a2 / e14a2

by JoeP (Mar 29)

I don’t know of any tracking for TFR but I recently fell out of undetectable status and learned that there are 2 common BCR:ABL types, e13a2 and e14a2. Turns out that type e13a2 has less favorable

by Justine (Mar 26)

Thank you Alastair, I will have a look.

Thanks!
Category: Treating CML

Replies: 8

Last updated: 25 April 2025
CarlaWild on 22 April 2025

Category: Reproductive health

Replies: 4

Last updated: 24 April 2025

Surgery whilst on Imatinib
by CarlaWild (Apr 24)

Thank you for replying.
Did the anaesthetist raise any concerns over it? I’m worried that’s it’s ‘elective’ surgery they may all argue against me having it because no one seems to understand the

by David Fitz (Apr 24)

I had a fairly big surgery about 10 years ago - the kind you need to stay in the hospital for a week. I was taking dasatinib, and was advised to just keep taking it throughout. It all was fine.

by CarlaWild (Apr 23)

Thank you for your reply, I did think a month sounded too excessive considering that Imatinib only has an 18 hour half life. My consultant has said that as my bloods are ok he’s not concerned at all

by JoeP (Apr 23)

I had oral surgery a few years ago and it was advised that I stopped taking the medication 5 days prior. I was on Imatinib at the time. To me a month sounds somewhat excessive but depending on the
Category: Reproductive health

Replies: 4

Last updated: 24 April 2025
Sd on 21 April 2025

Category: Side effects

Replies: 2

Last updated: 23 April 2025

Imatinib and Tetanic Contractions
by JoeP (Apr 23)

I never knew that those symptoms were referred to as Tetanic contractions. I had a lot of that on Imatinib. Ya they are the worst. I had to watch how vigorously I worked out at the gym. Probably

by Buzzm1 (Apr 22)

Sd, if you haven't yet reduced your Imatinib dosage, you should certainly begin to do so.
Buzz

by Sd (Apr 21)

I have been on imatinib for 5 years. My BCR/ABL is good. No detectable disease for the past 2 years. However, I have developed tetanic contractions in my legs and feet. This occurs in the morning
Category: Side effects

Replies: 2

Last updated: 23 April 2025
56x11 on 18 April 2025

Category: About CML

Replies: 0

Last updated: 18 April 2025

ASXL1 Mutation
by 56x11 (Apr 18)

Hello,
How many out there have this mutation?
For those who have or had it, I have several questions.
1) How have you and your team addressed this in general?
2) Did you experience TKI resistance?
Category: About CML

Replies: 0

Last updated: 18 April 2025
MartinZA on 21 January 2025

Category: Treating CML

Replies: 13

Last updated: 15 April 2025

29 months in TFR - my miracle continues
by hannibellemo (Apr 15)

Martin, congratulations! I love hearing stories of successful TFR, especially when the background story is as unlikely for TFR success as yours has been. I'm wishing for you many more years of TFR

by hannibellemo (Apr 15)

@kat73, I'm so sorry to read this! Like you, I had a rapid PCR rise when I stopped dasatinib for my pleural effusions, so I wasn't particularly hopeful that TFR would be successful—and it wasn't. 4

by kat73 (Mar 25)

Will do, Martin, and thanks.

Kat

by MartinZA (Mar 19)

Hi kat,
Sorry, I only saw this post now... Thank you so much for the kind words and encouragement. I'm so sorry that TFR wasn't possible for you, but I'm pleased you've been able to stay positive
Category: Treating CML

Replies: 13

Last updated: 15 April 2025
Jonty R on 22 May 2024

Category: Treating CML

Replies: 29

Last updated: 29 March 2025

Changing to Second Gen TKI's
by JS001 (Mar 29)

Hi Kat,
Thanks for your reply and the useful advice.
I shall continue to strive to reduce my dose to 20mg at the earliest opportunity.
Take care.
James

by kat73 (Mar 25)

James - I'm glad you're doing well on 50 mg. To answer your question, unlike my experience with imatinib when reducing from 400 even just down to 300 mg made a significant improvement in side

by JS001 (Feb 28)

Hi Kat,
Thanks for your reply.
My goal is to reduce my dose of Dasatinib to 20 mg at some point.
I was initially on 100mg Dasatinib as a 2nd line TKI in 2017/18 for 10 months, but never reached

by kat73 (Feb 28)

James - When I researched and was encouraged on the old LLS forum in the US to bring my dasatinib dosage down to 20 mg, my oncologist resisted heartily. I emailed and got really nice responses from
Category: Treating CML

Replies: 29

Last updated: 29 March 2025