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rebeccacrosby on 20 February 2023

Category: Treating CML

Replies: 6

Last updated: 24 February 2023

Blast phase with AML
by rebeccacrosby (Feb 24)

Thank you for sharing about your experience with your transplant. My doctor told me it is my best chance so I am going for it. I have a 17yr old son I want to see graduate from high school and go to

by sandy craine (Feb 22)

Hello Becca,
Again, let me say I am sorry you have to deal with both CML and AML .... that is a pretty rare diagnosis and it must be hard for you.
I will share my experience of transplant.

I

by rebeccacrosby (Feb 22)

Hi Sandy,

Thank you for your response. I was diagnosed with both CML and AML. I am being treated in Boise, Idaho in the United States. They are testing my siblings now, or at least have sent

by sandy craine (Feb 21)

Hi Rebecca,

I am sorry you are having to deal with this turn of events. Has your clinician told you your have AML as a second leukaemia, as well as Ph+CML? Or did he/she mean that your CML has
Category: Treating CML

Replies: 6

Last updated: 24 February 2023
israel on 2 January 2023

Category: Uncategorised

Replies: 5

Last updated: 23 February 2023

What I learned 8 years post diagnosis.
by Costas (Feb 23)

Loved it! Enjoy and have as much fun as you can.😊

by hannibellemo (Jan 7)

@israel, now that's what I call a "happy dance"! Cheers to 2nd chances!

by Dustylloyd (Jan 6)

Spot on Isreal!

by alexmcpee (Jan 4)

Haha good for you. We should all be dancing at a 2nd chance at life 😀
Category: Uncategorised

Replies: 5

Last updated: 23 February 2023
suvankardas on 16 February 2023

Category: Side effects

Replies: 2

Last updated: 22 February 2023

Blurry vision
by alexmcpee (Feb 22)

Every ailment I have experienced has been since commencing TKI including occasionally blurry vision. No reason or rhyme does it when it feels like it along with other symptoms.

by Buzzm1 (Feb 17)

suvankardas, it's a wait and see.
Hopefully the dosage reduction has reduced, or eliminated, your side-effects.
Buzz

by suvankardas (Feb 16)

Now it’s almost 3months since I started Imatiniv 400. New symptom like blurry vision and joint pain. Is it common with you guys or it’s only me who has to go through such side effects?
Category: Side effects

Replies: 2

Last updated: 22 February 2023
Yurii on 20 February 2023

Category: Treating CML

Replies: 7

Last updated: 21 February 2023

Transplantation in CML
by alexmcpee (Feb 21)

Hi thereZ In the UK as a citizen this treatment is all free, not sure how it works for non citizens, but in my mind citizens of plant earth deserve the same treatment. It’s about time these

by ColoradoGuy (Feb 20)

Well it is insurance through your employer usually. Not all employers offer this benefit. The insurance company can't screen you to deny service based on pre-existing conditions.

by Yurii (Feb 20)

Is it possible to switch to this insurance plan if you are already sick?

by ColoradoGuy (Feb 20)

I get medical coverage through my employer in the USA and I believe those over 65 have to pay about $5,000 out of pocket or something like that before medicaid kicks in. An online pharmacy
Category: Treating CML

Replies: 7

Last updated: 21 February 2023
johnw1001 on 20 February 2023

Category: Uncategorised

Replies: 0

Last updated: 20 February 2023

Amazon Smile programme ends-no more support to charities
by johnw1001 (Feb 20)

Just a note to say that Amazon have decided to discontinue as from today, February 20 2023, support to specific charities based on individual spend by those who have nominated a particular cause -
Category: Uncategorised

Replies: 0

Last updated: 20 February 2023
Alien69 on 18 February 2023

Category: Side effects

Replies: 0

Last updated: 18 February 2023

Genetic Risk of Prediabetes and Diabetes Development in Chronic Myeloid Leukemia Patients Treated With Nilotinib
by Alien69 (Feb 18)

See Genetic Risk of Prediabetes and Diabetes Development in Chronic Myeloid Leukemia Patients Treated With Nilotinib
Category: Side effects

Replies: 0

Last updated: 18 February 2023
StayStrong3916 on 9 February 2023

Category: Uncategorised

Replies: 12

Last updated: 14 February 2023

Question for Scuba Re:D3
by StayStrong3916 (Feb 14)

Mods, if this post is offensive, please remove and send me an email of reprimand.
To Scuba's point, I 100% agree. There really is no one single magic bullet in the prevention of or remission of

by scuba (Feb 14)

Interestingly - Dr. Garland passed away from esophageal cancer (2010). He probably was taking vitamin D supplements and measuring his vitamin D blood level prior to his diagnosis given his research

by StayStrong3916 (Feb 13)

As stated in an earlier post, I could not make the audio in that particular video work.
So I decided to watch several of Dr Garland's lectures on youtube.
I found one which I believe many will

by StayStrong3916 (Feb 13)

Will look into it. Thanks very much!
Category: Uncategorised

Replies: 12

Last updated: 14 February 2023
RC Kirk on 19 January 2023

Category: Treating CML

Replies: 10

Last updated: 23 February 2023

Asciminib - Latest update updated
by Sunny (Feb 10)

Thank you David and Nimbus.
Wow, 27 videos, a lot to watch and to learn. I was really happily surprised to see our own Prof Apperley again; haven't seen her for ages, since we started telephone

by David Fitz (Feb 7)

You can see the videos of the sessions here:
https://www.cmladvocates.net/cml-horizons-2022-hybrid-conference/
It was a great conference this year. Lots to learn.

by Sunny (Feb 7)

Thank you, Nimbus. Looking forward to viewing them.
pigeon

by Nimbus2 (Feb 7)

From the Horizon video, I understand that Asciminib works on a different "pocket" to the other TKIs. Dasatinib is the most broad based inhibitor that acts on many kinases whereas Asciminib
Category: Treating CML

Replies: 10

Last updated: 23 February 2023
Kathyp on 4 February 2021

Category: Uncategorised

Replies: 10

Last updated: 9 February 2023

Claiming benefits
by Gwyneth (Feb 9)

You can certainly apply for PIP. If you can, get someone to help you to fill in the forms (I recommend Citizens Advice). Extreme fatigue can cause you to be unable to dress easily, to have

by chrissie (Feb 10)

Hi Cathy
I am a Benefits adviser for Citizens Advice and to clear your mind as to whether you should apply or not if you google
citizens advice PIP descriptors
you

by sarahrose (Feb 6)

Where are you from? Have you had a transplant? If you have had a BMT in the US you automatically qualify for disability payments. CML is very hard to get disability for. However, you could attempt

by Kathyp (Feb 6)

Thank you all for replying , I don’t think I’ll put myself through the stress of applying x
Category: Uncategorised

Replies: 10

Last updated: 9 February 2023
igennem on 8 February 2023

Category: Drug-food interactions

Replies: 3

Last updated: 9 February 2023

green tea question aagain
by scuba (Feb 9)

You are correct on nilotinib (which is similar in structure to imatinib). I mis-typed.

by igennem (Feb 9)

Yeah thanks a lot, that makes sense :D
But actually what I see is that elimination half time of nilotinib is also 15-17 hours.

by scuba (Feb 9)

Green tea has polyphenols, primarily epicatechin and epicatechin gallate which can decrease the effectiveness of TKI's such as nilotinib (Tasigna).
But it is important to note that green tea

by igennem (Feb 8)

Hi All,

I see this question came up already a couple of times but I couldn't really come to a conclusion.
Is the green tea decreasing effects of the TKIs especially tasigna?
Category: Drug-food interactions

Replies: 3

Last updated: 9 February 2023
Alien69 on 24 January 2023

Category: Treating CML

Replies: 4

Last updated: 7 February 2023

Is it a good idea to change bosutinib to asciminib?
by Alien69 (Feb 7)

Thank you for your information. A patient told me that the pleural effusion decreased with asciminib without completely disappearing.

by kat73 (Feb 6)

I have somewhat the same profile as you, and yes, I would jump at the chance to switch to asciminib. I maintain MR4 to MR4.5 on just 20 mg dasatinib, but have minimal residual pleural fluid

by Alien69 (Jan 27)

My results were very good with all the TKIs - I became PCRU with all of them. I lost PCRU with imatinib due to the mutation. On the strength of this good performance, I am trying to stop bosutinib

by Buzzm1 (Jan 24)

What have your test results shown over the last nineteen years and what dosage of each TKI were you on at that time?
Category: Treating CML

Replies: 4

Last updated: 7 February 2023
rambler on 11 August 2022

Category: Blood tests

Replies: 10

Last updated: 6 February 2023

Low platelets, low WBC. First post
by rambler (Feb 6)

Hello Sandy,
Thanks for your message.
As you probably remember, I had a hospital appointment with the doctor today. Had a blood test first. Then to the doctor.
We were told from the blood test that

by sandy craine (Feb 4)

Hi Paul, You should definitely ask detailed questions of your doctor. I have been treated at Imperial College Hammersmith since my diagnosis in 1999. I eventually showed resistance to imatinib in

by rambler (Jan 30)

Hello Sandy,
Many thanks for writing
I didn’t know I had too much to worry about until you mentioned ASXL1 could be complicating matters. Hmmm. Now I have googled the gene it doesn’t

by sandy craine (Jan 30)

Hi Paul,
Re: ASXL1 gene.
From what I have read and understand (very little) ASXL1 is a tumour suppressor gene. It certainly complicates the picture. As you live in London, I assume/hope you are
Category: Blood tests

Replies: 10

Last updated: 6 February 2023
suvankardas on 1 February 2023

Category: Side effects

Replies: 7

Last updated: 6 February 2023

Serious bone pain on imatiniv
by Nimbus2 (Feb 6)

My cramps and bone pain stopped the very day that I changed from imatinib to dasatinib.

To a lesser degree, I have suffered from cramp all of my life. That has also stopped dead.

Also

by Vikram (Feb 2)

3-4 month leg pain go
Normal...body adjust imtinib...
I m on imtinib last 14-15 year no leg pain..
side effects...in my case
Hair fall. (600 to 400 dose discrease only this side effects hair fall

by johnw1001 (Feb 2)

I had this during the first six to twelve months of taking imatinib but then it subsided .As one of my doctors said to me this is normal as imatinib is doing its job by changing the composition of

by suvankardas (Feb 2)

I didn’t take my medicine yesterday. As per doctor’s suggestion I won’t take it for 2 more days . My doctor in Chennai, India is reluctant to stop imatiniv. Hope the pain goes away
Category: Side effects

Replies: 7

Last updated: 6 February 2023
AlastairC on 19 January 2023

Category: Uncategorised

Replies: 11

Last updated: 5 February 2023

Amazon Smile/Easyfundraising
by David Fitz (Feb 5)

Me too - but unfortunately with Drupal 7 soon to be out of support (i.e. no security fixes) it’s not tenable to continue to run it on the current platform as it would put our members personal

by israel (Feb 5)

Thanks David,
I like the site the way it is, by the way.
Best,

by David Fitz (Feb 4)

Yes, it’s based on Drupal 7 with some custom modules which aren’t directly upgradable to newer versions. So it’s not necessarily a simple upgrade path.
OpenSocial (which is

by israel (Feb 4)

I'm also curious to know more about what it takes to upgrade. I see this forum was built on Drupal (version 7?), is this right?. Are you thinking of moving to Drupal 10 or using a completely
Category: Uncategorised

Replies: 11

Last updated: 5 February 2023
kristina on 2 February 2023

Category: Uncategorised

Replies: 0

Last updated: 2 February 2023

Small intestine wall thickening as a symptom?
by kristina (Feb 2)

Hey everyone, I have been diagnosed in late November 2022 and have been on Imatinib for nearly two months now.
Before diagnosis I have been struggling with digestive issues upset stomach and
Category: Uncategorised

Replies: 0

Last updated: 2 February 2023
steven7 on 3 January 2023

Category: Treating CML

Replies: 1

Last updated: 31 January 2023

Hair transplant while taking dasatinib
by steven7 (Jan 31)

Hi, GayaRojerr
Do you know someone done with hair transplant?

by steven7 (Jan 3)

Hi folks,
I have experienced hair loss after taking dasatinib. But my family history may play a role.
Regarding the options to avoid getting bald, I think about doing the hair transplant, my hair
Category: Treating CML

Replies: 1

Last updated: 31 January 2023
sandy craine on 30 January 2023

Category: Treating CML

Replies: 0

Last updated: 30 January 2023

iCMLf webinar: Management of advanced phases of CML- Feb 22nd 2023
by sandy craine (Jan 30)

You may be interested in watching this webinar:
Management of advanced phases of CML
Professor Mhairi Copland Professor of Translational Haematology, University of Glasgow (UK)
Date: February 22nd
Category: Treating CML

Replies: 0

Last updated: 30 January 2023
Nimbus2 on 30 September 2019

Category: Uncategorised

Replies: 1

Last updated: 27 January 2023

Diabetes type 2 and imatinib
by KarleeRangel (Jan 27)

Hi there. I found your old forum post about the potential link between imatinib and diabetes type 2. I hope you're doing well. It's been a long time since you started this thread. Still, it

by Nimbus2 (Sep 30)

There was a flurry of papers and news articles in 2006 speculating that imatinib may lead to a treatment for diabetes type 2.
Researchers in the United States and in South Korea found that imatinib
Category: Uncategorised

Replies: 1

Last updated: 27 January 2023
Rupert on 20 January 2023

Category: Uncategorised

Replies: 2

Last updated: 23 January 2023

Seeing double
by Rupert (Jan 23)

Thanks very much Sandy. There are mild cataracts too, so we were thrown off the scent, but the specialist opthalmologist now definitely attributes the double vision to the Imatinib. I have just been

by sandy craine (Jan 23)

Hi Rupert, I am so sorry you have had to tolerate this for so long. I am surprised your clinician allowed you to suffer without further investigation of what the cause might be - did he/she not send

by Rupert (Jan 20)

I wonder what other people's experiences have been with their eyes. Since diagnosis two years ago I have responded very well to Imatinib but very early on in treatment my eyesight went to pot. I
Category: Uncategorised

Replies: 2

Last updated: 23 January 2023
kristina on 13 January 2023

Category: Reproductive health

Replies: 3

Last updated: 23 January 2023

CML and immunity
by sandy craine (Jan 23)

Hi Kristina,
Re: high dose vitamin C.
It remains outside the mainstream accepted clinical 'arsenal' to use vitamin supplementation as a way of treating serious diseases/cancer, so I am not

by kristina (Jan 17)

Hi Sandy, thank you so much for your reply!
Luckily, I have already started vitamin D and will encourage my husband to start both vitamin D and C as well. I am also at the moment

by sandy craine (Jan 17)

Hi Katrina,
regarding your blood counts dropping below 'normal' levels: given you are only 1 month into TKI therapy you may expect this drop in blood counts. Over the coming months of

by kristina (Jan 13)

Hi everyone, thank you so much for all the repo see I got on my previous threads!
I have just finished my first month of Imatinib and my WBC are below the range and platelets are rapidly crashing.
Category: Reproductive health

Replies: 3

Last updated: 23 January 2023