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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
Sav_5 on 7 January 2023

Category: Drug-food interactions

Replies: 3

Last updated: 18 January 2023

Tasigna and diet restrictions
by hannibellemo (Jan 18)

Hi, Savvas,
I think the original thought would be, if intolerable side effects or even the inability to afford the full dose of the drug kept one from being compliant, then perhaps a low(er) dose

by Sav_5 (Jan 18)

Hi miss Pat,
I have read about these fruits. I don't eat them except pomegranate that I used to eat every day in winter period. Right, Grapefruit inhibits CYP3A4 and may elevate the amount of

by hannibellemo (Jan 9)

Sav_5,
I've only been told to avoid grapefruit, so I do. There is a fact sheet out there that also mentions starfruit, pomegranate, Seville oranges and other similar fruits. I eat those other

by Sav_5 (Jan 7)

Hi everyone and happy new year!!

I have been on nilotinib for a year and except the three hour fasting, I knew from the beginning that should avoid grapefruit.

Are there any other diet
Category: Drug-food interactions

Replies: 3

Last updated: 18 January 2023
Zaccar on 24 March 2021

Category: About CML

Replies: 9

Last updated: 18 January 2023

Health insurance, employer and confidentiality
by KaiaAllison (Jan 18)

Hey there, I hear ya on not wanting to share your medical info with your employer. I know the law says you don't have to reveal it during the hiring process, but you may want to look into what

by MiloMoses (Jan 17)

Time to give this thread a bump, I guess. We've recently moved all the employers to Portland, so we'd like to know how health insurance works here. Any relevant inforamtion would be highly

by Rocky Mountain Gal (Jul 13)

Here in the US it is illegal for companies to ask. Your medical information is protected by HIPPA, but you have to read the small print.
When I was first diagnosed I took a medical leave of

by Zaccar (Apr 6)

Hey cdw500,
To me not telling your employer was the right choice. I don't know your rationale but here's mine. A Lot of people are diagnosed while in a career with a clear path or
Category: About CML

Replies: 9

Last updated: 18 January 2023
kristina on 17 January 2023

Category: About CML

Replies: 0

Last updated: 17 January 2023

intravenous vitamin c + Imatinib
by kristina (Jan 17)

Hi everyone, hope everyone is feeling good :)
I am currently on my second month of living with CML and taking Imatinib 400mg. I am considering taking IV vitamin C at higher dosage (15g +) and wanted
Category: About CML

Replies: 0

Last updated: 17 January 2023
Wendy Lewis on 8 January 2020

Category: Uncategorised

Replies: 6

Last updated: 17 January 2023

Massage/Facial
by David Fitz (Jan 17)

It’s absolutely fine. The only time I’d be hesitant would be if you were newly diagnosed and had a massive spleen.

Other than that, enjoy it!

by JeemyWolker (Jan 17)

I'm also a little afraid to massage with cml, please tell me about your experience.

by hannibellemo (Jan 9)

Wendy,
Massage away! I've had monthly massages for several years and no issues. I tried "cupping" for some reason a few years back and I had an onc appointment the next day. He asked

by Wendy Lewis (Jan 8)

Hi David, Thanks for the reply. I was diagnosed March 2019. Imatinib complete failure after first 3 months. Nilotinib has had a response, blood test was Monday just the long wait for results to come
Category: Uncategorised

Replies: 6

Last updated: 17 January 2023
MartinZA on 4 January 2023

Category: Treating CML

Replies: 8

Last updated: 16 January 2023

MR 4.5 again after almost five months off the drugs
by MartinZA (Jan 16)

Hi everyone
Thank you so much for all the wisdom and advice! Kat, I appreciate your message as you put a lot into perspective - I have a power failure in the morning of my test and wasn't

by Buzzm1 (Jan 15)

Unfortunately, the testing protocol established during the STOP Trials for the purpose of gathering meaningful statistics leads to a lot of unnecessary testing when a CML patient is not

by David Fitz (Jan 15)

Obviously not a worldwide agreement, but the BSH recommendation (following TKI discontinuation) is:
PCR monitoring should be:

Monthly for six months
Six-weekly from 7 to 12 months
Two-monthly from

by Buzzm1 (Jan 12)

Hi Martin, I just wanted to mention that it shouldn't be necessary for you to test monthly. Your PCR level is unlikely to go anywhere quickly, so testing every two months should suffice.
Category: Treating CML

Replies: 8

Last updated: 16 January 2023
Mixail on 15 January 2023

Category: Treating CML

Replies: 0

Last updated: 15 January 2023

New treatment possible
by Mixail (Jan 15)

I do not if this is allowed but new treatment possible
https://www.newscientist.com/article/2350806-experimental-crispr-techniq....
Category: Treating CML

Replies: 0

Last updated: 15 January 2023
cousineg2 on 13 January 2023

Category: Treating CML

Replies: -1

Last updated: 13 January 2023

Asciminib - Latest update

Category: Treating CML

Replies: -1

Last updated: 13 January 2023
kristina on 26 December 2022

Category: Children & young people

Replies: 4

Last updated: 11 January 2023

Low WBC on Imatinib
by MartinZA (Jan 11)

Hi Kristina
So sorry to hear about your diagnosis last year - I know it's a terrifying time and just want to reassure you that this condition is very manageable for the majority of people, as

by sandy craine (Dec 27)

Welcome to this forum,
You may find it helpful to read (and re-read) our booklet on CML and testing/monitoring. It take some time to understand this disease as well as how the various tests show

by Fernando Burbano (Dec 26)

Hola Kristina.

Yo también fui diagnósticado recientemente hace dos meses, estoy tomando imatinib de 400 mg. Hace un mes me hice un hemograma y mis niveles estaban casi normales, no me he

by An (Dec 26)

Hi,

I think it takes some time for the blood counts to stabilize, it fluctuates a bit in the initial months.
Category: Children & young people

Replies: 4

Last updated: 11 January 2023