Results from ACEMBL Trial - Aciminib vs Bosutinib

Treatment-Free Remission in Chronic Myeloid Leukemia: Can We Identify Prognostic Factors?

Long-term follow-up of lower dose dasatinib (50 mg daily)

UK patients needed for "MyeloidScan" study – Long COVID in patients with myeloid blood cancers

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sandy craine on 15 September 2021

Category: About CML

Replies: 0

Last updated: 15 September 2021

PinnediCMLf Conversation: CML Biology related to TFR
by sandy craine (Sep 15)

Leukemic stem cells and microenvironmental regulation:
Professor Ravi Bhatia, Director of the University of Alabama Division of Hematology/Oncology and Deputy Director of the O’Neal
Category: About CML

Replies: 0

Last updated: 15 September 2021
logisnews on 19 January 2019

Category: Side effects

Replies: 32

Last updated: 18 September 2021

Chylous Ascites as a TKI side-effect? Specifically Sprycel?
by Michelle3 (Sep 18)

Thanks Pat.
I think we need to get the chylous ascites under control before we look at anything else.
this condition is horrific!!

by hannibellemo (Sep 18)

Michelle,
Sorry, I don't know how else to share the article with you. It is published under Urology. The keywords are: Ascites, Cirrhosis, Prolapse, Colpocleisis. I just googled prolapse due to

by logisnews (Sep 17)

Wow. good luck to you. i've never heard of mesenteric lymphangiomatosis; i googled it but not sure, still. i don't know about MEK inhibitors just TKI inhibitors which

by Michelle3 (Sep 17)

Hi Pat/Jim,
Sorry for the delay in replying, I was waiting until I met with a professor in London. He thinks I have mesenteric lymphangiomatosis and this was described as being like an
Category: Side effects

Replies: 32

Last updated: 18 September 2021
Taper11 on 11 September 2021

Category: Uncategorised

Replies: 3

Last updated: 18 September 2021

Rib/Spleen Discomfort - Dasatinib
by Richard (Sep 18)

I contracted CML in 2004, and it was confirmed on June 14, the day before my 54th birthday. I started taking imatinib in July of that year. I have rather a chequered health history, having had a

by Taper11 (Sep 12)

Thanks for the kind words, Thomas.

Bit of a stressful time, all the waiting is tough, and I am definitely hyper aware of my body I suppose.
Was doing pretty well a month ago when doctors

by thomas.c (Sep 12)

Worry not your TKIs will do their job, and there are many options if you have trouble with a particular brand. Give it time… not days, but several months. You are very early in your treatment

by Taper11 (Sep 11)

Hi everyone,

I am a 33 year old male, recently diagnosed Ph+ 1.5 weeks ago.
I started Dasatinib 100mg 9 days ago. After 4 days I noticed aches in my left rib cage/abdomen and it has persisted
Category: Uncategorised

Replies: 3

Last updated: 18 September 2021
KingBurger on 27 August 2021

Category: Blood tests

Replies: 5

Last updated: 18 September 2021

Sprycel
by KingBurger (Sep 18)

Thanks for checking in. I seem to be doing well. I take the Sprycel each morning and the headaches and nausea have all dissipated. The only thing I do notice at times is a rapid and strong heartbeat

by Krissi0913 (Sep 18)

Hi! I take 100 mg Sprycel. My only suggestion is to take it in the evening. Sprycel tends to some fatigue and brain fog for me, so if I take it at 10 pm, I am just sleeping through it.

by Felix (Sep 3)

Hi Kingburger,just checking to see how you are feeling on your new meds .Headaches in the morning? Hope you are feeling ok ,Regards .

by KingBurger (Aug 28)

Thanks Felix for the response. I had this discussion with the CML specialist when he made the change ask if I could take 50mg instead. I lost the debate- his rationale was since I was resistant to
Category: Blood tests

Replies: 5

Last updated: 18 September 2021
sandy craine on 28 August 2021

Category: Other conditions

Replies: 10

Last updated: 17 September 2021

vitamin D and melatonin, and how they may help with COVID-19.
by scuba (Sep 17)

If you are going to take 12,000 IU's weekly, best to spread it out during the week (2,000 IU's per day) rather than taking at one time on one day. Any level much above 10,000 per day is not

by sbp03 (Sep 17)

Thanks Scuba, her vitamin D is in its 40s, she really tests twice a year and supplement with 12.000 IU weekly. Our concern was related to an eventual complication in her chronic portal vein

by scuba (Sep 8)

You can absolutely take vitamin D without K2, but just need to be aware of dose and D base level. Vitamin K2 is a sort of safety valve for D. Take in too much D and the k2 helps mop it up. I did

by sbp03 (Sep 7)

Hi Scuba, would it be of concern on taking vitamin D without K2 as my wife is also taking warfarin (vitamin k antagonist) and her doctor advised it against vka and K2 interaction, but not against
Category: Other conditions

Replies: 10

Last updated: 17 September 2021
MarkP66 on 16 September 2021

Category: Uncategorised

Replies: 4

Last updated: 17 September 2021

Where to buy Vitamin D tablets over 4000iu
by MarkP66 (Sep 17)

Thanks Sandy

by MarkP66 (Sep 17)

Thanks David

by sandy craine (Sep 17)

I buy mine from Amazon but there are others, just search high dose D3 ... https://www.lifeextensioneurope.co.uk/vitamins/vitamin-d/
Sandy

by David Fitz (Sep 17)

Hi Mark,
I’ve bought from this place before. Good range and decent prices.
https://nuunutrition.com/collections/all/products/vitamin-d3-10-000-iu-3...

David.
Category: Uncategorised

Replies: 4

Last updated: 17 September 2021
Mick E on 1 September 2021

Category: Uncategorised

Replies: 9

Last updated: 17 September 2021

Insulin resistance
by Mick E (Sep 17)

Thanks Sandy I will have a look at information sheets on those drugs.
I speak to specialist in 3 weeks so hopefully it will give me time to get a clearer picture of what’s happening.

by sandy craine (Sep 17)

Hi Mick,
OK, so hyper (too much). Scuba makes some good suggestions re exercise and low carb diet for weight loss etc. but that may not be an issue for you? If you did not have this problem before

by Mick E (Sep 17)

Thanks for the detailed reply Scuba! 😊
I do a lot of exercise (within my limits) and constantly monitor recovery levels to ensure I don’t overdue things. Did my first 24 hour fast last

by Mick E (Sep 17)

Sandy I should have typed “hyperinsulinemia”! 🤦‍♂️

I've previously been on Imatinib, dasatanib and bosutinib. Imatinib was successful in lowering levels
Category: Uncategorised

Replies: 9

Last updated: 17 September 2021
Rick B on 1 August 2021

Category: Uncategorised

Replies: 19

Last updated: 17 September 2021

Some Expertise Needed - TFR
by Buzzm1 (Sep 17)

Hi Rick,
Knock me over with a feather. Haven't ever heard the term cleanse before and have only seen one case, out of the many that I have monitored, that might be somewhat comparable ...

by Rick B (Sep 16)

Buzz et al,
I just got my latest PCR BCR-ABL1 analysis back. My score moved in a positive direction, down to 0.0645% IS. So I am still in treatment free remission and will now go on an every six

by Buzzm1 (Sep 11)

Thanks Rick, I'll appreciate hearing what your onc has to say.
Buzz

by Rick B (Sep 11)

Buzz,
I appreciate your perspective and take on my situation. I meet with my onc on Monday.
Rick
Category: Uncategorised

Replies: 19

Last updated: 17 September 2021
johnw1001 on 1 September 2021

Category: Treating CML

Replies: 39

Last updated: 16 September 2021

Third or booster Covid jab for "vunerable" patients in UK
by Ismo (Sep 16)

Interesting info Scuba. Why do you think Haematologists are not so interested in Vit D levels? Mine said a test was unnecessary if I was eating a normal balanced diet and wasn't

by scuba (Sep 16)

Additional recent information that vitamin D will help minimize Covid severity or outright prevent it.

https://www.marketshockers.com/vitamin-d-may-protect-severe-covid-infect...

Vitamin D may

by David Fitz (Sep 15)

Funny how different hospitals do things so differently. My doctor is happily running a quantitative antibody test for me, but it comes with big warnings on how to interpret it.
If you just want a

by sandy craine (Sep 15)

Hi Christine,
I agree with everything Scuba has noted in his post to you. I would like to point out that the difference in measurement of D3 is crucial when trying to follow the 'guidelines
Category: Treating CML

Replies: 39

Last updated: 16 September 2021
Deni H on 14 September 2021

Category: Uncategorised

Replies: 8

Last updated: 16 September 2021

Holiday Insurance Advice
by Deni H (Sep 16)

Thanks so much Pete.
I'll check them out.
Deni x

by Dustylloyd (Sep 16)

Demi,
just been talking to a fellow cml member and they recommended Avanti travel insurance.
Pete.

by Dustylloyd (Sep 16)

Hi Deni
I used alpha travel insurance for my trips abroad but at the moment there in the process of changing there insurers, I can feel a large hike in insurance premium prices coming, and yet how

by Deni H (Sep 15)

Thanks so much Christine
I'll take a look at them
Much appreciated
Deni x
Category: Uncategorised

Replies: 8

Last updated: 16 September 2021
Zzyzxuk on 12 October 2020

Category: Uncategorised

Replies: 14

Last updated: 16 September 2021

Just found out... :(
by jonnie turpie (Sep 16)

It has worked! Your diary has been sent using the envelope messaging function. I see it is very extensive with a great title: A High Powered Mutant of My Own Making
I will begin reading

by jonnie turpie (Sep 16)

OK Thanks.

I have send a message using the envelope icon.

by AlastairC (Sep 15)

The forum does have private messaging - see the envelope icon on the right hand side of the ribbon at the top of the page.

by EvaH (Sep 15)

Sure.
I somehow thought this forum had private messages but seems not...
Category: Uncategorised

Replies: 14

Last updated: 16 September 2021
JacqJohn on 11 September 2021

Category: Side effects

Replies: 11

Last updated: 15 September 2021

CML & Imatinib - frequent burst of blood vessel in the eye
by AlastairC (Sep 15)

When I was on 400 mg imatinib I used to have one or two eye bleeds per year. When I reduced to 200mg the bleeds stopped, and other side effects (cramps, bastric issues) were much reduced.

by JacqJohn (Sep 14)

Hi Buzz,
thanks for the feedback. I’ll talk to my hematologist and see… thank you again !~

by Buzzm1 (Sep 13)

JacqJohn, in an effort to eliminate your eye issue, it would be worth trying to have your onc reduce your dosage down to 300mg. You are far enough below CCyR, 1.0, that it shouldn't be a

by EvaH (Sep 13)

Ahh ok, very different to my experience.

I think imatanib is only known for bleeds into the eyeball (which are not visible) but I'm not sure.
Category: Side effects

Replies: 11

Last updated: 15 September 2021
vonnie on 12 September 2021

Category: Uncategorised

Replies: 2

Last updated: 12 September 2021

Abdominal cramps
by vonnie (Sep 12)

Hi John, thank you for your prompt and informative reply.. Regarding your IBS query. I was diagnosed with IBS in 2012 and initially was given mebeverine, an antispasmodic to help with muscle

by johnw1001 (Sep 12)

Hi Bonnie,
You dont say which tki you are on .I have been on imatinib for 15 years and have always found that it leads to rapid bowel movements and this is a common side effect.Looking at the list

by vonnie (Sep 12)

Hi all. I would very much appreciate advice regarding a problem I currently have As well as my CML I have been diagnosed with IBS some years ago. I have over the past month been suffering with
Category: Uncategorised

Replies: 2

Last updated: 12 September 2021
ruddoug09 on 9 September 2021

Category: Food & fitness

Replies: 3

Last updated: 12 September 2021

Fueling exeercise
by sorin real (Sep 12)

Actually, I think I have the same problem. I'm on Tasigna myself , 600mg/day and lately after taking 6 grams/day of L-Glutamine for my IBS, my BCR-ABL has increased from 0.115 to 0.872.
I

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by snowman 35 (Sep 9)

Hi!

I work-out too. I do crossfit so my muscles are often very sore and tired. I feel the need too take supplements too help me but my doc told it is better not to take protein, creatine etc

by ruddoug09 (Sep 9)

Hi all
Ages since I've posted on here but i'm after a bit of advice that I'm struggling to get information on elsewhere. I've read a few threads on here but only picks out
Category: Food & fitness

Replies: 3

Last updated: 12 September 2021
Rory on 10 September 2021

Category: Treating CML

Replies: 3

Last updated: 10 September 2021

PCR Increase of 2800% following MMR4 - on Dasatanib
by Rory (Sep 10)

Guys - thanks so much for this input. I’ve no idea what size of magnitude you can see in outruns or downturns but of course am a bit sceptical about such a seemingly massive increase.

by scuba (Sep 10)

Rory - I would ask for an immediate re-test. It is quite possible the results are due to lab error (it happens), but if it is not, you do not want to wait two months to confirm a dramatic upward

by ipmaki (Sep 10)

Hi Rory,
I can relate to significant upticks. It is very stressful. Especially in the first year or two when I believe resistances are more likely to pop-up. At this point your numbers at 0.14% are

by Rory (Sep 10)

My first post, so hopefully someone is out there!
Having had a positive continuing downward trend on PCR ABL counts - since getting onto Dasatanib over just over a year my numbers had come down from
Category: Treating CML

Replies: 3

Last updated: 10 September 2021
Damian Gabilondo on 9 September 2021

Category: Uncategorised

Replies: 5

Last updated: 10 September 2021

Tasigna - Curcuma ?
by scuba (Sep 10)

Hi Damian,
"what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation".
Your doctor is min-informed.

by Damian Gabilondo (Sep 9)

Thank you very much, your knowledge helps, what the Doctor told me at some point was that if I take my medication wrong, it could generate some type of resistance or mutation, from the beginning he

by scuba (Sep 9)

I now take "curcumin" in all kinds of forms. The medical part are as capsules (2 grams per day) C3 complex Curcumin with bioperine (pepper). But I also now take Turmeric root (ground as a

by Damian Gabilondo (Sep 9)

Thanks for the answer SCUBA you are a great reference, in what way do you recommend me to consume turmeric? capsules - root? . My doctor does not agree with the reduction very much but if with TFR,
Category: Uncategorised

Replies: 5

Last updated: 10 September 2021
Tanya Cuffe on 7 September 2021

Category: Uncategorised

Replies: 6

Last updated: 8 September 2021

Should I attempt TFR?
by Tanya Cuffe (Sep 8)

Thank you and all the best!

by EvaH (Sep 8)

MMR since feb 2017

Dose reduction started July 2021
Just had my first test a few weeks ago, still undectable. Id have done it sooner but my docs were not keen and covid times weren't conducive

by Tanya Cuffe (Sep 8)

Thank you Alistair I will take a look

by AlastairC (Sep 8)

Tanya, it might be useful to look at this video from the CML SG Patient day 2 years ago. The title is "Reducing or stopping treatment - who and when?" Yes it is two years old, and some
Category: Uncategorised

Replies: 6

Last updated: 8 September 2021
Kathyp on 5 September 2021

Category: Uncategorised

Replies: 2

Last updated: 8 September 2021

Anxious with dose reduction
by chrissie (Sep 8)

I have been on 300mgs for several years now and reached 0.000% on this dosage for the first time - and am holding it 15months later. I have tried 200mgs twice - but both times my PCRs started rising

by Kathyp (Sep 8)

Thank you John that was really helpful, I hope your doing well

by johnw1001 (Sep 8)

Hi,
After 15 years I had to discontinue for 14 weeks back in November 2019 and then continued again as soon as I lost MMR. Before the event my consultant told me that if I lost MMR then

by Kathyp (Sep 5)

Hi all , just started my glivec dose reduction , just doing it a 100 mg at a time but I’m feeling so anxious about it, it’s been my safety net for the last 18 years ,do you guys feel the
Category: Uncategorised

Replies: 2

Last updated: 8 September 2021
Christine R on 7 September 2021

Category: Uncategorised

Replies: 5

Last updated: 7 September 2021

Breast/prostate cancer link to Leuakaemia
by johnw1001 (Sep 7)

On a very general level if one asks the question what causes CML there are no definitive answers except there seem to be three headings of types of influences-1.exposure to radiation,2 exposure to

by sandy craine (Sep 7)

Sorry I misunderstood your post. Alastair is right, there is a link from exposure to ionising radiation - including via radiotherapy for other cancers- and the development of Leukaemia (including

by AlastairC (Sep 7)

Christine have you had radiotherapy at any stage? There is a known link between high dose radiation and an increased risk of leukaemias, including CML. I believe the radiotherapy I had for a

by Christine R (Sep 7)

Thanks Sandy. I was intending on asking that in a couple of weeks when i have an appointment. I seem to be adding it to a long list.
I did ask if even if it was genetic was there anything they could
Category: Uncategorised

Replies: 5

Last updated: 7 September 2021
Danmason11 on 1 September 2021

Category: Drug-food interactions

Replies: 16

Last updated: 7 September 2021

Cough medicine and vitamins
by Danmason11 (Sep 7)

That’s great, thank you all so much for your help and advice.

Dan

by sandy craine (Sep 7)

Hi Scuba,
My suggestion for Dan to start supplementing with high dose for a few weeks is because he has an active COVID infection. If I were him I would want to raise by level as much as

by scuba (Sep 6)

Additional information:

https://www.youtube.com/watch?v=ha2mLz-Xdpg (nice video summary on D3 impact and importance in the body, Covid and related)
https://www.youtube.com/watch?v=dAkaVjKNXJs (

by Danmason11 (Sep 6)

That’s really helpful, thank you all.
That’s right Sandy, I don’t know my plasma levels unfortunately. Therefore, is there any suggestions on what I should start at? And is there a
Category: Drug-food interactions

Replies: 16

Last updated: 7 September 2021